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Following suggestions from visitors to the website, this page has been set up to allow me to give details of items about M.E. and related issues, as well as other subjects, that will hopefully be of interest to those who visit the site. Do let me know what you think!

November 2015
Further responses to the article in The Telegraph about the PACE Trial
An open letter to Dr Richard Horton and The Lancet

Dr. Richard Horton
The Lancet
125 London Wall
London, EC2Y 5AS, UK
Dear Dr Horton:
In February, 2011, The Lancet published an article called “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomized trial.” The article reported that two “rehabilitative” approaches, cognitive behavior therapy and graded exercise therapy, were effective in treating chronic fatigue syndrome, also known as myalgic encephalomyelitis, ME/CFS and CFS/ME. The study received international attention and has had widespread influence on research, treatment options and public attitudes.
The PACE study was an unblinded clinical trial with subjective primary outcomes, a design that requires strict vigilance in order to prevent the possibility of bias. Yet the study suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings. The patient and advocacy communities have known this for years, but a recent in-depth report on this site, which included statements from five of us, has brought the extent of the problems to the attention of a broader public. The PACE investigators have replied to many of the criticisms, but their responses have not addressed or answered key concerns.
The major flaws documented at length in the recent report include, but are not limited to, the following:
*The Lancet paper included an analysis in which the outcome thresholds for being “within the normal range” on the two primary measures of fatigue and physical function demonstrated worse health than the criteria for entry, which already indicated serious disability. In fact, 13 percent of the study participants were already “within the normal range” on one or both outcome measures at baseline, but the investigators did not disclose this salient fact in the Lancet paper. In an accompanying Lancet commentary, colleagues of the PACE team defined participants who met these expansive “normal ranges” as having achieved a “strict criterion for recovery.” The PACE authors reviewed this commentary before publication.
*During the trial, the authors published a newsletter for participants that included positive testimonials from earlier participants about the benefits of the “therapy” and “treatment.” The same newsletter included an article that cited the two rehabilitative interventions pioneered by the researchers and being tested in the PACE trial as having been recommended by a U.K. clinical guidelines committee “based on the best available evidence.” The newsletter did not mention that a key PACE investigator also served on the clinical guidelines committee. At the time of the newsletter, two hundred or more participants—about a third of the total sample–were still undergoing assessments.
*Mid-trial, the PACE investigators changed their protocol methods of assessing their primary outcome measures of fatigue and physical function. This is of particular concern in an unblinded trial like PACE, in which outcome trends are often apparent long before outcome data are seen. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol.
*The PACE investigators based their claims of treatment success solely on their subjective outcomes. In the Lancet paper, the results of a six-minute walking test—described in the protocol as “an objective measure of physical capacity”–did not support such claims, notwithstanding the minimal gains in one arm. In subsequent comments in another journal, the investigators dismissed the walking-test results as irrelevant, non-objective and fraught with limitations. All the other objective measures in PACE, presented in other journals, also failed. The results of one objective measure, the fitness step-test, were provided in a 2015 paper in The Lancet Psychiatry, but only in the form of a tiny graph. A request for the step-test data used to create the graph was rejected as “vexatious.”
*The investigators violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be “adequately informed” about researchers’ “possible conflicts of interest.” The main investigators have had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work. They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This serious ethical breach raises concerns about whether the consent obtained from the 641 trial participants is legitimate.
Such flaws have no place in published research. This is of particular concern in the case of the PACE trial because of its significant impact on government policy, public health practice, clinical care, and decisions about disability insurance and other social benefits. Under the circumstances, it is incumbent upon The Lancet to address this matter as soon as possible.
We therefore urge The Lancet to seek an independent re-analysis of the individual-level PACE trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design. The reviewers should be from outside the U.K. and outside the domains of psychiatry and psychological medicine. They should also be completely independent of, and have no conflicts of interests involving, the PACE investigators and the funders of the trial.
Thank you very much for your quick attention to this matter.
Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London
Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Bruce Levin, PhD
Professor of Biostatistics
Columbia University
Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
Arthur L. Reingold, MD
Professor of Epidemiology
University of California, Berkeley
ME isn’t just ‘exercise phobia’: it’s a physical illness
Tanya Marlow

Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’?
This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, view themselves as healthy, and increase their exercise. The NHS guidelines amalgamate ME and Chronic Fatigue Syndrome, assuming symptoms are caused by deconditioning and ‘exercise phobia’. Sufferers are offered Graded Exercise to increase fitness, and Cognitive Behavioural Therapy (CBT) to rid them of their ‘false illness beliefs’.
Enter Spectator writer Rod Liddle, who’s baffled by ME patients wanting better treatment than this. The culprit, he claims, is not the therapy, but society’s stigma of mental illness. With a strange logic, he asserts that because ME patients deny that they have a psychiatric disorder, this proves they have a psychiatric disorder.
Meanwhile, people are quietly dying of ME. ME sufferer Emily Collingridge died, aged 30; Victoria Webster died at just 18. People don’t die from ‘exercise phobia’. ME is not ‘lethargy’ and ‘aches and pains’, as Liddle claims. Severe ME is lying in a darkened room, alone, in agonising pain, tube-fed, catheterised, too weak to move or speak.
Sophia Mirza was such a person. Her doctors believed ME to be psychiatric, so police broke into her home, carrying her by force to a psychiatric institution to pursue Graded Exercise Therapy. She never recovered, and died soon afterwards of ME, aged 32. The cause of death was officially recorded as ‘Chronic Fatigue Syndrome’. Her autopsy revealed indisputable, pathological proof of the disease.
Though Graded Exercise helps some, the ME Association reports 74 per cent of ME patients are harmed by the therapy, with some made permanently disabled. Dr Julia Newton ran electrical pulses through muscle biopsies; Dr Van Ness tested anaerobic thresholds of ME patients – both studies demonstrated ME patients are damaged by exercise.
What about the claim, by the PACE trial, that Graded Exercise Therapy and CBT can treat ME? This is a trial where you could enter moderately ill, get worse in the trial, and be declared ‘recovered’ at the end. Even the recent follow-up study conceded that, long-term, Graded Exercise and CBT are no better for ME than doing nothing. Investigative journalists and academics alike have dismissed the PACE trial as ‘clinical trial amateurism’.
Like MS or epilepsy, which were also once wrongly believed to be psychiatric disorders, ME is a neurological disease, and the World Health Organisation lists it as such. I am too weak to walk more than a few metres, needing to lie in bed 21 hours a day. With the little energy I have, I am an ME patient activist.
Patients are releasing awareness documentaries, petitioning the NHS to reform their guidelines so that fewer patients are harmed, and asking for medical journals to retract misleading claims of recovery from the PACE trial. Liddle may see this as ‘blind fury’; I think our eyes are wide open.
Tanya Marlow is a writer, author, broadcaster and campaigner. She can be found at Tanyamarlow.com or @Tanya_Marlow

November 2015
The Scientifically Challenged UK Media Strikes Back

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.
The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article1.
Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures, a flawed methodology, which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness affecting lazy people whose only problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.
To start Knapton states:
Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’1.
Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities.  To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,
The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’1.
A definition of dramatic: sudden and striking, impressive3
The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.
Her next paragraph aggravates matters,
The finding is important because many CFS sufferers believe that exercise will make their condition worse.’1
Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage(4,5).
Two more paragraphs in the article were particularly disturbing:
But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’1
In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,
Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”1
There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.
Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,
After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.
Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.
Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.
These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.
A final comment from Professor Sharpe:
‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’1.
Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.
1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)
2) http://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/
3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)
4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)
5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)
6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

October 2015
From the "Voices From The Shadows" website -
‘Trial By Error’ – by David Tuller.

‘Voices from the Shadows’ shows the devastating effects some patients have suffered following exercise programmes. These treatments of Graded Exercise Therapy and Cognitive Behavioural Therapy, used as the primary treatment for CFS and ME on the basis that patients have become de-conditioned from resting too much, caught in a cycle of boom and bust as a consequence of mistaken ideas about this illness, have become the accepted treatment across the NHS for patients.
David Tuller is  academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. He has spent the last year or more pursuing an in-depth investigation into a major research project – the UK’s PACE Trial –  which received what was a disproportionate amount of money from the MRC in comparison with other research projects for CFS in the UK. The distorted publicity give to the trials results, which misrepresented the illness, impacted very badly on public and health professionals perceptions of patients.
David Tuller’s investigation, ‘Trial By Error’ was published in three instalments on October 21st, 22nd and 23rd 2015 in Virology with links to each instalment at 
He says “Top researchers who have reviewed the study say it is fraught with indefensible methodological problems.” and includes quotes by a number of highly respected scientists –
Dr. Bruce Levin, Columbia University: “To let participants know that interventions have been selected by a government committee ‘based on the best available evidence’ strikes me as the height of clinical trial amateurism.”
Dr. Ronald Davis, Stanford University: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”
Dr. Arthur Reingold, University of California, Berkeley: “Under the circumstances, an independent review of the trial conducted by experts not involved in the design or conduct of the study would seem to be very much in order.”
Dr. Jonathan Edwards, University College London: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”
Dr. Leonard Jason, DePaul University: “The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.”

The Brain Destroying, Cancer Causing Ingredient Hidden In Your Food
There’s a widespread and silent killer that’s hidden in most foods that is slowly destroying millions (maybe even billions) of people’s health. It’s worse for you than alcohol, nicotine and even many drugs.  And it’s likely lurking in your kitchen cabinets right now. What is this harmful substance that is so pervasive and unfortunately legal for food manufacturing companies to use? You’ve probably heard of it, but likely didn’t know how widespread its use was because it is allowed to be disguised under many different names. The ingredient is “monosodium glutamate” or MSG. You will learn here how MSG harms your brain and your health as well as its other “secret” names so you can avoid it and protect your health.
I used to think that MSG was just in Chinese food, but the truth is that it’s actually added to thousands of the foods you and your family regularly eat, especially if you are like most Americans and eat the majority of your food as processed packaged foods or in restaurants.
MSG is one of the most harmful additives on the market and is used in frozen dinners, crackers, canned soups, processed meats, barbeque sauce, salad dressings, and much more. It’s found in your local supermarket and restaurants, in your child’s school cafeteria and, amazingly, even in baby food and infant formula.
Why is MSG so harmful? It’s an excitotoxin — substances, usually containing amino acids that react with specialized receptors (neurons) in the brain in such a way as to lead to the destruction of certain types of brain cells. Humans lack a blood-brain barrier in the hypothalamus, which allows these excitotoxins to enter the brain and cause damage.  Simply put, as described in Dr. Russell Blaylock’s excellent book, Excitotoxins: The Taste That Kills, they are exactly what they sound like: toxins that excite your brain cells to death!
How does this happen?
As Dr. Blaylock explains, “MSG enters the brain past the blood-brain barrier and triggers neurons to open their calcium channel. The glutamate causes the cell to remain stuck in the open position then calcium floods into the cell in large amounts. This triggers the cell to react in emergency mode and starts its special pump that will start pumping out the excess calcium using up large amounts of energy (ATP).
The cell then swells up with excess calcium and eventually the cell is depleted of energy and dies within a few hours. The pump couldn’t pump out the excess calcium fast enough. It’s like trying to bail water out of a boat with a large hole in the bottom. You use up a ton of energy and eventually the boat is filled and sinks. The cell shrivels up and the body’s defense mechanism sweeps away the dead cell debris.”

No strain of rat or mice is naturally obese, so the scientists create them. They make these morbidly obese creatures by injecting them with MSG when they are first born. The MSG triples the amount of insulin the pancreas creates, causing rats to become obese.
MSG creates a lesion in the hypothalamus that correlates with abnormal development, including obesity, short stature and sexual reproduction problems.  MSG has also been shown to kill brain cells as well as to cause nausea, vomiting, migraine headaches, depression, and heart problems.
As I mentioned earlier, MSG is often disguised under many other names and therefore, you may not be able to detect it in a list of ingredients unless you know what to look for.
According to Dr. Russell Blaylock, MD, the following are hidden MSG derivatives listed on ingredient labels that should be avoided.
Natural Flavors/Flavoring
Corn oil
Glutamic Acid
Yeast Extract
Soy Protein
Soy Isolate
Carrageenan (often in almond and other nut milks)
Natural Beef Or Chicken Flavoring
Hydrolyzed Vegetable Protein
TVP (Textured Vegetable Protein)
Glutamate Textured Protein
Gelatin Yeast Nutrient
Autolyzed Yeast
Citric Acid
Food companies learned that MSG increased the flavor and aroma and enhance acceptability of commercial food products, so it is doubtful that they will ever quit using this brain killing additive to our food supply.  Take a quick trip to your kitchen and check your pantry and fridge. You will likely see that MSG is in almost everything processed: soups, chips, ramen noodles, gravy, sauces, salad dressings, corn oil, broth and so many other items.
If you want to avoid MSG, learn to read ingredient labels and better yet, eat foods that are whole foods – foods from nature that are unprocessed. Your health and your family’s are worth the extra effort!

October 2015
Statins: One of the Greatest Failures of Modern Medicine

An interesting new post on Dr Brownstein's blog -
Over the weekend, I travelled to Chicago to lecture my colleagues.  I was asked what I thought about evidence-based medicine.  In fact, I am frequently hammered by my conventional colleagues because they claim that I do not follow evidence-based medicine.  Of course, I disagree with that statement as I am always reading the medical literature and I am happy to point out the evidence that supports my use of holistic medicine.  My books and other articles have numerous citations supporting the medicine that I practice.
However, I take issue when conventional doctors claim that evidence-based medicine supports the use of statin drugs in treating/preventing heart disease.  In fact, evidence-based medicine, when studied objectively, would reveal that statin drugs should not be prescribed for either treating or preventing heart disease.
Let’s look at statin guidelines.  The new guidelines recommend nearly half of Americans over the age of 40—more than 50 million people—may qualify for taking a statin drug in order to lower their heart attack risk.  I have written in my blog posts, newsletter, and in my book, The Statin Disaster, that statin drugs fail nearly 99% who take them—they neither prevent heart attacks nor have they been shown to help people live longer.
On October 6, 2015, an article in the New York Times was headlined, “Heart Scan Can Fine-Tune Risk Estimate for Patients Considering Statins.”  The article stated that a new study on CT scans of the coronary arteries, which can identify calcium deposits in the arteries, can help guide health care providers whether or not to prescribe a statin drug.   If there is little calcium in the coronary arteries, the authors found a lowered risk of heart attacks.   A cardiologist profiled in the article states that he uses the coronary CT scans because “All the other biomarkers get blown away compared to the calcium score {of the coronary arteries}.”
So, is there evidence that increased calcium in coronary arteries is associated with an increased risk of heart disease?  The answer is yes.  Where is the evidence that statins help lower coronary calcium levels?  There isn’t any.  In fact, the opposite is true:  research has shown that statin use actually increases the deposition  of calcium in coronary arteries.  (1)  Yes, you read that right.  In fact, researchers reported, “…coronary artery calcium progression was fastest among participants using statins…”  This wasn’t the only study to report that fact.  Other researchers have concluded, “Independent of their plaque-regressive effects, statins promote coronary atheroma calcification.” (2)
I would venture a guess that you just read that last paragraph again.
To be fair, the authors of the second study claim that statins may stabilize coronary plaques.  However, that has never been proven and even if that is true, it is hard to make a positive argument for using statins at all when they fail nearly 99% who take them.   And, I am not even discussing the horrendous side effects and the tremendous cost of statin drugs.
Folks, evidence-based medicine should be used and embraced.  It is too bad that conventional medicine fails to use it when it comes to statins (as well as many other drug therapies).  The evidence behind the statin studies should expose statins as one of the greatest failures in modern medicine.
More information about statins can be found in my book, The Statin Disaster.
1.  J Am. Heart Assoc. 2015;4:e001726
2.  J. Am. College of Cardiol. 2015;65:1273-82

October 2015
Patients battle for justice

By Leonard A. Jason

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.
In the beginning, patients with this illness had a credible name, myalgic encephalomyelitis (ME), and diagnostic criteria that had been developed by the distinguished British physician, Dr. Melvin Ramsay. Yet, in 1988, the Centers for Disease Control (CDC) renamed this illness chronic fatigue syndrome (CFS). Patients were unanimous in their disdain for this trivializing term, but they were no match for the supreme power and authority of the CDC. The new name placed patients around the world in a compromised position, as they were now forced to use a degrading and stigmatizing term in explaining their illness to family members, friends, work associates and medical personnel.
Patients were next characterized as having a relatively rare “Yuppie Flu” disease, and flawed epidemiology was responsible for these inaccurate and biased characterizations. If this were not enough, the CDC in 1994 developed a case definition that did not require the cardinal symptoms of this illness (such as post-exertional malaise and neurocognitive impairments). When this porous case definition was used to select patients, the resultant heterogeneity increased the risk of failing to consistently identify biomarkers, which contributed once again to dismissing those affected as having a psychiatric illness. Misguided psychiatrists then developed treatment approaches focusing on increasing exercise, even though the patients’ chief complaints were muscle weakness and exercise-induced fatigue.
Rarely in the annals of recorded medicine has there been such a David and Goliath-like battle, with impaired and sick patients trying to defeat an entrenched medical and scientific establishment. Their story of resistance is not one of an epic skirmish, but rather a veritable war with health care professionals and scientists that has endured for decades, as has been so well documented by Hillary Johnson.
This past year, in an effort to rectify these tragic abuses, the Institute of Medicine (IOM) released a report that not only clearly emphasized the debilitating nature of this illness, but also strikingly rejected the stigmatizing name CFS and the defective case definition. Unfortunately, particularly in light of decades of past disastrous scientific blunders, the IOM once again imposed an inappropriate name (i.e., systemic exertion intolerance disease) on the patient community, but patients valiantly challenged this recommendation by collecting data that exposed the spuriousness of this foolish name change effort.  Even a federal panel called the Chronic Fatigue Syndrome Advisory Committee at its recent meeting in August has rejected this new name.
The IOM also released a new case definition to replace CFS, and our published work now suggests that these new criteria would almost triple the prior CFS prevalence rate, and this is in part due to the inclusion of individuals who formerly had been excluded. Unwittingly, this inadvertent action accomplished much of what Bill Reeves and the CDC had attempted to do a decade ago when they proposed an ill-fated expansion of the case definition.
Is there any way to salvage the damage inflicted on the larger patient community by well-intentioned scientists from the IOM?  Perhaps we might consider re-activating the brilliant scholarship of Dr. Melvin Ramsay and the term Myalgic Encephalomyelitis, which would identify a smaller more homogenous group of patients as having ME. In contrast, those meeting the broader IOM criteria, which we might call neuroendocrine dysfunction syndrome (which had been recommended by the patient inspired Name Change workgroup over a decade ago) could replace CFS and this category would represent a larger group captured by the key IOM symptoms. Those that do not meet the ME criteria or the broader IOM criteria could be classified as having chronic fatigue, which is the most general category, and represents those with 6 or more months of fatigue. Such a tripartite classification system would eliminate the detested term CFS, validate the original respected name ME, differentiate ME from the IOM criteria, and provide a new nonstigmatizing term for those not meeting the more restrictive ME criteria. In addition, the broader IOM criteria could be used for clinical purposes, whereas the more restrictive ME criteria could be used for research purposes. Some scientists might prefer to consider this tripartite grouping a matter of severity rather than categorical differences, but all agree that differentiations of this type occur with many diseases, and such a classification system has the potential to clarify discrepant findings from epidemiologic, etiologic, and treatment studies.
Ultimately, whatever decisions are made on the names and criteria, the vetting process needs to be open, inclusive and transparent, with patients playing a prominent, decisive, and leadership role in these deliberations.

September 2015
New research gives insight into chronic fatigue syndrome

(Although this article from Australia unfortunately uses the term “chronic fatigue syndrome”, it also states that the name Myalgic Encephalomyelitis “is far more accurate”, which is nice to see.)
Researchers have discovered that critical cell receptors are damaged in people who suffer from chronic fatigue, reports Daniel Horsley.
Carly Tomlinson spent more than 18 months lying in bed after being diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS), in 2012.
“It makes you feel as though you have the flu every single day – sore throat, headaches, fevers, aching body, inability to think, sensitivity to light and noise – all that jazz,” the 24-year-old East Bentleigh woman said.
While she is now back and working at a tea shop 10 hours a week, Ms Tomlinson still takes between 14 and 22 tablets daily. She needs two tablets of one of these medications, imported from Germany, every four hours to prevent her from fainting.
“[Chronic fatigue] weakened my body more than I ever saw coming,” she said.
Ms Tomlinson also developed four separate heart conditions, was unable to digest dairy and gluten and needed to start wearing glasses.
ME affects between 100,000 to 250,000 people in Australia, leaving around 25 per cent of them bed-bound. Experts say it is a nightmare to diagnose because it has a range of about 50 different symptoms, of which 20 occur in about 70 per cent of patients.
It is a disorder that has no cure and its cause is still largely unknown. It triggers a range of conditions including long-term fatigue, and muscle and joint pain as well as damage to the cardiovascular and digestive systems.
But now researchers may have found a key to explain why chronic fatigue syndrome can wreak such havoc on the body.
Scientists at Queensland’s Griffith University have discovered that critical cell receptors that help regulate human cells can be damaged by an infection or severe physical or psychological trauma.
There are many different kinds of receptors found throughout cells that help them function normally. It is common for receptors to make harmless, tiny changes to the cell, known as polymorphisms.
But in people with ME the damage is done to the so-called “threat receptors” which, like white blood cells, deal with potential attacks to the body.
While the researchers are yet to discover if this damage to the cell receptors causes either a loss or an increase in function, they do know that because these receptors are connected throughout the body any malfunction can cause extensive damage.
Professor Don Staines, the co-director of Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, said the next step is to find out “why this happens to some people and not others”.
Dr Staines, who is the head of a ME research team, said the term “chronic fatigue” is hated throughout the medical profession.
Although it’s known as chronic fatigue syndrome, he said fatigue is an unfortunate word because it trivialises the severity of the condition. He said the word fatigue is better applied to the slow recovery time.
Dr Staines said the formal name of the illness, myalgic encephalomyelitis is far more accurate because in medical terms it relates specifically to brain and spinal cord inflammation with associated muscle pain.
But as frustrating as Dr Staines finds chronic fatigue to be as a medical term, Ms Tomlinson is weary dealing daily with people’s assumptions about her condition.
“If one more person says to me ‘Oh, so I guess you’re just really tired then, that’s all?’, I really might crack it.”

September 2015
Consider The Evidence by Jane Colby, Executive Director of the TYMES Trust

Consider the evidence. You've had what you thought was flu. Or something like glandular fever. Or, you've had a stomach upset, a gastroenteritis. Or, you've had a bad throat, a cough. Maybe you've had a combination of these, or just some weird bug, perhaps something you hardly noticed, or believed was a cold.
You expected to throw it off and get on with your life. As we normally do with these things. And maybe, to start with, you do. But in a short while, something else happens. Something quite other than what you expected. And this you don't throw off.
This mirrors the pattern of poliomyelitis; an initial infection, an apparent improvement, followed by the complications. Your bug was quite the chameleon, a shape-shifter par excellence. It could have mimicked flu if it chose, or glandular fever, it could have given you a bad throat, a funny tummy, aches and pains, sneezes. It is versatile and has many different presentations. So some people are told they've had flu, some are told they've had glandular fever, some are told they've had tonsillitis - you get the picture.
What follows is clearly none of these. It's another stage, a terrible development from the original infection. Your immune system didn't kill it off, it is still engaged in the battle, and is likely to be for a long time.
Weeks and months later, you still feel dreadful, worse than you've ever felt with other illnesses. You don't recognise these feelings. Something's different about them, truly different. Your mind tries to alert you to the presence of injury, but you can't take it in. No more can anyone else. You're not just unable to exert yourself, you're in pain, your muscles won't work properly, they twitch and hurt, you fall downstairs when your brain forgets how to put one foot in front of the other, your skin burns and prickles, it can't bear to be touched, yet half your face has gone numb. You ring the doctor in a panic. Is it a stroke? You can't speak your own language correctly, or make sense of what others are saying. You know what the words mean, but they don't hang together. And it all takes so long to process. It's as if your internal Broadband went down. You feel unsafe; for the first time in your life, you can't trust your body.
Recognise any of this?
One day you struggle to a local shop and find you can't count the money in your purse. Your fingers buckle when you get home and try to cut bread. From now on, you buy sliced bread, only to find you can no longer grip the can opener to prepare what you thought was an easy lunch of soup and toast. With an Olympic effort, you get at the soup and sit on a stool as it warms. You eat your lunch, which tastes rubbish, and leave the washing up for a rest. But you get sick of staring at days' worth of crumbs on the carpet. So you get out the hoover, like Hercules. That's more like it. You're normal after all. Relieved, pleased, proud, you heave it back into the cupboard and collapse on the sofa. You're clearly on the mend. It'll be fine.
It's not fine.
Soon, you're in serious pain. Your muscles feel sore, inflamed inside. Suddenly, your heart starts racing, it's tripped into a different mode and doesn't switch back again for ages. What a relief when it does. But that's not normal, surely? And you're ill. So ill. You couldn't say quite how you know that. Your body is telling you many new things, things it's never had to say to you before, and you're still not used to these messages. But now you begin to take heed. Somehow you get to bed; you'll see the doctor in the morning. Next day you wake not knowing quite who you are or what the day is. You can't stand up.
This is not funny.
It's not material for a comedian's jibe, nor a presenter's cheery: 'We must sort that one out!' before moving on to the next feature. Oh yes, that's been said. With no conception of the public health threat we are facing, and that they are not announcing.
It's certainly not amenable to exhortations to 'pull yourself together'. Or to confident assertions from physiotherapists that riding a bike, or playing tennis, will cure you in three weeks. Oh yes, that's been said too. This is uncharted territory for you, perhaps also for your GP, your relations, your neighbours, your boss, who's naturally asking when you'll be back. You don't know when you'll be back. You just want to be better and you don't care how. You start on the endless quest for a quick fix, you start believing it when you're told it's depression, or that you need psychological therapy; you pore over all those clippings given you by well-meaning friends, stories of someone who's found a magic 'cure' (and who, by co-incidence, is now selling it at eyewatering rates) and you wonder, like the ancients thousands of years ago: 'What did I do to deserve this?'
In the end you get a diagnosis. Chronic Fatigue Syndrome. Chronic what? That can't be right. Fatigue? I know what fatigue is. It's when you wear yourself out, you sit with a cup of tea and in half an hour you're ready to go. Or it's when you've worked long hours, you have a bath before bed and wake ready for a new day. That's 'fatigue'. This is not fatigue. Whatever it is, it's unfamiliar, alien. And, at last, you start trusting yourself. You start believing in your own judgement.
And all this time your body has been pleading: 'Let me alone please, just feed me, love me, let me rest, try to find pleasure in something simple - the flowers and the trees and the rain - endure the pain, ask the doc to check out the ache in your chest, but don't bother me with trivia like how you're going to afford months off work. I've got a life-saving job to do here. It's going to take me some time. Read a book. Several books. Well, OK, read the whole library, even if you can't hold the book or focus for long, and keep forgetting the plot. I understand. I really do. Get yourself a new life, a different one. It'll be restricted but if you just let me work on it, I'll give it my best shot. You don't have a choice really, do you?'
'Oh, you do. You're going to let them put you through their latest exercise programme. (Sigh.) Well, my advice would be, wait till I'm much better. Hopefully I will be, if you don't let anyone meddle and make me worse. Deal?'
Sadly, how you're going to afford months off work isn't trivia. It may not be your body's priority, but it's yours. Where are your living expenses to come from? You cringe at the idea of benefits, you feel ashamed to need them. Worse, proving your need is the stuff of nightmares.
And if you're a child? The law says you have to work. They don't call it work, they call it 'school', but it's the same thing. Going to work. Some adults can negotiate working from home. Try doing that as a child. You don't fit the mould. 'You're anxious,' they say ('If you had my disease, you'd be anxious!') or, 'she's got social phobia' ('But I miss my friends!') or your mum's neglecting you, or maybe doing something to make you ill ('She's what? She's the only person I can trust.') Then they get really suspicious: 'Her mother's aggressive.' Let's think about that. Would you approach a calf when it's mother's around? Parents are supposed to defend their young from a threat. That's what mums and dads are for. School is no place for a seriously ill child.
But the system doesn't recognise what's wrong with you.
Now surely, I'm being unfair, aren't I? Surely, most professionals are kind and caring and sensible. And - well - professional. Indeed, many are. If you're one of these people, know that you are like gold dust. You will never be forgotten throughout that child's life. I was head of a school for nine years, I still work with teachers, and have just signed Mr Paul Willsher's Tymes Trust Young Hearts Award certificate for which he was nominated by his pupil, Amy. But equally, I am ashamed at the things that are said to children with ME by other members of my own profession: 'I don't care how much pain you're in, you're not going home till lunch time.' 'You've trained your brain to be ill.' And from a seven year-old's school plan: 'When child does not wake in the mornings, mum is to carry child into school in her pyjamas and teachers will dress her when she wakes and take her to class.'
In the words of a nurse in training who got dragged into the child protection nightmare: 'We are just shellshocked by it all. I read the 1997 Panorama programme transcript and felt physically sick. We don't know what to do and we're scared of all this.' She continues: 'I am absolutely bewildered as to why this has happened. I have to wonder how an illness can cause all of this and why the person affected and their families aren't listened to.'
That's my point. That is what this scandal has led us to. History has to put it right. And the patient's voice is where we get many of our answers. The patient is telling the doctor what is wrong. And the doctor must listen.
Did you notice?
Did you notice my sleight of hand? I named this episode 'Consider the evidence'. Of course, I was referring to concrete evidence, your evidence, your own personal, grounded, real-life lived experience.
There are those who would have you believe that this doesn't count - well, not for much. That's because evidence-based medicine (the buzz-phrase being sagely reiterated like the management-speak satirised in The Office) is all about randomised controlled trials (RCTs), the 'gold standard'. Perhaps, in theory, it is more reliable than a collection of uncontrolled anecdotes from individual patients. In practice, it's not necessarily reliable at all. Not according to the former head of the Medical Research Council. Why? Too many pitfalls. Too many ways in which the criteria used for the studies, the processes involved in analysis of results (not to mention the slant - one might almost say 'spin' - applied at the writing up stage) can be subtly shifted till a pattern emerges that is satisfying to the researcher. It's natural. Scientists frequently have a hypothesis; often the data appears to prove it. But we tend to see what we want to see. Researchers are just as capable of error, bias and downright stupidity as other mere mortals. They are human.
There was a time when doctors were placed on pedestals and it did them no good at all; they found it hard to confess when they weren't all-knowledgeable, in case they slipped off. Now the pedestal has been moved. Now it's researchers sitting up there. But they no more deserve worship than any other profession. Wise scientists, like wise doctors, wise teachers, wise parents, wise human beings, recognise that it is in no-one's interests to ignore reality. 'Once upon a time,' posterity will say, 'there was a school of thought which held that people whose ME got worse when they exercised, got better by being exercised.' What?
The tragedy is that sincere people, doctors and therapists who want to do all they can to help, get sucked into the black hole of belief, even when the evidence is before their eyes, even when parents are telling them: 'Doctor, it doesn't work.'
When you know how these viruses multiply after exercise, it is chilling. I'll deal with that in a future episode.
Let's come at this from another angle. I was very moved back when World War I veteran Harry Patch, in his last years, announced to the media that war was legalised murder, and that leaders who wanted to go to war should be given a gun and told to go fight each other. This man didn't need a randomised controlled trial of weapons to know the horrific things they do to a human body. He had seen it at first hand. He had the authority of personal experience from which to judge, and from which to speak and be heard. I didn't notice him being derided. He may not have been able to eradicate war - that surely is the holy grail - but he wasn't ignored, he was listened to, given a media platform, and his evidence wasn't relegated to some sort of basement dump.
People with ME have the equivalent authority, yet when they clearly describe their illness and recount their personal experience of what it has done to them, how they have seen exertion worsen their condition, how their bodies just do not function, too often they find their real-life evidence relegated to the lowest category of reliability. The basement dump. This has to change.

August 2015
Dr. Andrew Wakefield Speaks Out on CDC Vaccine Science

This is an astonishing interview.  The public statements made by Dr. Wakefield here were some of the most damning I've ever heard.  He accused Dr. Gerberding and Dr. De Stefano of fraud and criminal cover-up of the truth about vaccine damage.   We are destroying the health of a generation of children through the total lack of government oversight.  It has to stop.
To watch the interview -  https://www.youtube.com/watch?v=cSDMZSXLdak
In this hour long discussion, Dr. Wakefield talked about his work on the MMR vaccine and bowel disease/autism, including the retribution he personally experienced.  He explained the legal issues he became involved in when parents made claims against the vaccine maker whose vaccine injured their children.  He came to the conclusion that "these [official] safety studies are totally inadequate."  He urged the use of single vaccines instead of the combined MMR vaccine, and in response, vaccine makers stopped making the separate shots.
Wakefield discussed the politics involved in this controversy and the pressure put on those who speak out.
He made the stunning statement:"The notion of protecting children against serious infectious disease using safe and effective vaccines is laudable.  Unfortunately, none of the vaccines that are currently on the schedule, in my opinion, come anywhere close to meeting those criteria, either alone, but most particularly in combination."
Wakefield was most critical in his remarks about the ethic/motivations of the vaccine industry and Brian Deer.
We owe a debt of gratitude to Stacy Francis for allowing Dr. Wakefield this opportunity to explain what happened to him and how it changed his life

August 2015
New HOPE for You and ME
By Rich Carson

Living with one of the most devastating, disabling chronic diseases known to man is not easy, but patients like you and I can live happy, rich, vastly rewarding lives if we live with hope and the the self-discipline to take good care of ourselves. To do to this we need to empower ourselves with actionable information that we can use to help us to feel our best. And it's also critically important to acknowledge with every fiber of our being the truth of our situation, that 'this too shall pass.' We will get well; it's just a matter of time.
Breathtaking technological advances are furthering our understanding of medicine and the underlying processes involved in ME/CFS, FM and Lyme Disease—and it's happening at an ever-quickening pace. Exponential improvements in technology will soon make effective treatments and a cure only a matter of time.
My faith in finding a cure is bolstered by the simple fact that progress in technology is exponential, not linear. This means that like in Moore's Law, technology is doubling in its abilities about every 18 to 24 months. This law has held true since it was postulated by Intel co-founder, Gordon Moore in 1965. As Ray Kurzweil, the brilliant inventor and futurist, says in his illustration of differentiating exponential from linear progress, 30 steps taken linearly puts you 30 steps ahead, while 30 steps taken exponentially puts you one billion steps ahead. I'm counting on the law of exponentiality to yield a cure before we know it. Remember how long the human genome project was supposed to last? Need I say more?
Want an example of something that is the result of exponential technological progress? Take a look at your smart phone. While we may take its many amazing features for granted, its power was unthinkable only 10 years ago—make that five years ago. That's the power of exponential progress. And it's happening in medicine, too, and it's going to get patients who suffer from ME/CFS, Fibromyalgia and Lyme Disease well before we know it. I'll bet on it.


ProHealth founder and CEO, Rich Carson, was diagnosed with Chronic Fatigue Syndrome in 1981. He began ProHealth in 1988 as a way to give other patients access to the supplements that proved most beneficial to him and others with ME/CFS and fibromyalgia.
A national leader in the fight against ME/CFS, Rich has been one of the top fundraisers in the United States for research against the disease since 1986, and was chosen to represent the Center for Disease Control in their $4 million Chronic Fatigue Syndrome awareness campaign. In 1997, Rich conceived and launched the Campaign for a Fair Name, which succeeded in changing the common name of the disease from Chronic Fatigue Syndrome to the name that patients prefer, ME/CFS.

July 2015
The European ME Research Group
A Future for European Research into Myalgic Encephalomyelitis

For a long time it has been the objective of Invest in ME to forge international collaborations between researchers.
IiME is a member of the European ME Alliance (EMEA) and recently EMEA has joined the European Federation of Neurological Associations in order to promote ME in Europe [1].
With our EMEA colleagues we have also had discussions on forming a European Advisory Board which would allow EMEA to discuss, initiate and fund biomedical research into ME.
This has led to further development of the idea.
During the recent Invest in ME BRMEC5 meeting in May this year [2] discussions with European researchers were conducted about the future of ME research and how better to coordinate and link together research activity in several European countries.
Based upon these conversations there appears to be overwhelming support and enthusiasm from the group of researchers whom IiME/EMEA have brought together to work cooperatively and more effectively.
Forming a group or consortium of European researchers represents a very progressive step in not only helping to establish new collaborations and cement on-going ones but also in developing new research ideas and priorities and bidding for funds that would allow us to work together on joint projects.
This is the genesis of EMERG! The European ME Research Group
The charity and EMEA colleagues are arranging the inaugural meeting in London this autumn - a new and exciting venture for ME research.
Facilitated also by our supportive MPs we will convene the first meeting to bring this together in the hope that rapid and lasting progress can be made in the research, treatment and cure for myalgic encephalomyelitis.
More information will be provided later.
In the meantime EMEA will be setting up a competition to devise a logo for EMERG – The European ME Research Group.
A European logo design competition will help inform patients/members about this development and keep all involved in its progress.
Details of the competition will be available soon on EMEA’s website – but we invite all European patients to begin thinking of designs to support this bold, new venture.
1              EMEA Joins European Federation of Neurological Aassociations
2              Biomedical Research into ME Colloquium 5

July 2015
Chronic fatigue breakthrough offers hope for millions


(This article unfortunately refers to chronic fatigue syndrome – but I imagine it will be relevant to at least some with ME.)
Misunderstood and neglected for more than 25 years, there is suddenly new hope for people diagnosed with what was once cruelly called "yuppy flu"
HAVING a condition that no one understands is bad enough. Having one that many also doubt the existence of is worse. Yet that has been the unenviable fate of millions of people diagnosed with chronic fatigue syndrome.
CFS first entered the medical lexicon in 1988 to describe a cluster of symptoms without an obvious cause that doctors were seeing in the Lake Tahoe area of Nevada. The principal symptom was debilitating tiredness, but people also complained of sore throats, headaches, muscle pain and various other manifestations of general malaise.
The lack of a clear biological cause, the fuzziness of the symptoms and the fact that many of the people diagnosed were young professionals opened the door to a smear campaign. The media were quick to dub CFS "yuppie flu".
Although it has shaken off some of its more pejorative nicknames in recent years, CFS has struggled to lose the stigma. People with the syndrome still say they are not taken seriously, blamed for their illness, or accused of malingering. Treatments are often psychiatric, which are a great help to many but unintentionally add weight to the idea that CFS has no physical cause.
Over the years, medical groups have launched campaigns to have CFS taken more seriously. The latest was in February, when the US Institute of Medicine proposed making a clean break with the past by renaming it systemic exertion intolerance disease. This has not caught on as yet.
The unsatisfactory state of affairs is largely a reflection of the fact that we do not have a good biological explanation for CFS. That has not been for lack of trying, but even here the disease seems to be a magnet for controversy. A paper published in 2009 in Science claimed to have found an association between CFS and a mouse virus. The paper was later retracted after other teams failed to replicate the result.
Now there is hope of a breakthrough. Researchers in Norway have been trialling a drug normally used to knock out white blood cells in people with lymphoma and rheumatoid arthritis. Two thirds of the people who took it experienced major remission of CFS symptoms, essentially returning to normal life, with bursts of vitality unthinkable while they were ill (see "Antibody wipeout relieves symptoms of chronic fatigue syndrome").
The discovery – which sprang from a serendipitous observation – offers more than just the promise of a much-needed treatment. It also suggests that the symptoms are somehow caused by antibodies originally produced to fight off an infection. The researchers speculate that they might disrupt blood flow, leaving muscles drained of energy.
If correct, this brings the scientific story full circle. CFS was initially suspected to be a "post-viral" syndrome – the lingering after-effects of an infection with Epstein-Barr. More importantly, it could offer people diagnosed with CFS both physical relief and psychological closure.
There are wider implications too. Pain and fatigue without an obvious cause account for a large percentage of visits to the doctor, and usually have an unsatisfactory outcome. On top of that, there are many other conditions – Morgellons, for example – that struggle for credibility. If the CFS mystery is finally solved, that offers hope to countless others struggling with unexplained symptoms. It may take another serendipitous discovery, but science is good at those.
This article appeared in print under the headline "Revitalised"

July 2015
ME on Radio Bristol

On 30th June John Darvall of BBC Radio Bristol interviewed Naomi Whittingham, her brother Tom and their mother.  Naomi has been ill with severe ME for 25 years.
To listen to the interview go to http://www.bbc.co.uk/programmes/p02tcq4y and forward to around 2 hours, 10 minutes, 30 seconds.
Radio Bristol has put a post about ME on it’s Facebook site – go to
I don't belong to Facebook, but I am able to view the page OK.

June 2015
Countess of Mar's Letter to Dr Suzanne O'Sullivan

Dr Suzanne O’Sullivan
National Hospital for Neurology and Neurosurgery
33 Queen Square
9 June 2015
Dear Dr O’Sullivan
I write to you as an Independent crossbench member of the House of Lords where I have been since 1975. I am a Deputy Speaker in the House. For more than 20 years I have represented the interests of people with ME/CFS and other MUPS. I am patron of several ME charities and Chairman of Forward-ME.
I have read David Aaronovitch’s review of your book: “It’s all in Your Head – True Stories of Imaginary Illness” and I have listened to what you had to say on Radio 4’s Start the Week programme yesterday, though I have not read your book. Aaronovitch quotes you in the introduction to the chapter on ME as admitting that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least.” He goes on to say that “This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic – caused by the mind and not by a disease – is intensely hostile. I have experienced this hostility.” I assume the last sentence refers to him personally.
Sadly, both you and he are right about the hostility to the views you both promote, but you give the wrong reasons for that hostility. In recent years there have been a host of papers that demonstrate that ME/CFS is a disease as well as an illness. Firstly the Canadian Consensus document on ME/CFS, published in 2003, gave good guidelines for diagnosis and treatment of people with ME. This was followed by the more comprehensive Myalgic Encephalomyelitis - International Consensus Document published in 2011. More recently, the highly respected US Institute of Medicine in its report “Beyond Myalgic Encephalomyelitis/ Chronic fatigue Syndrome: Redefining the Illness” released on 10 February 2015, made clear that the primary message of the Committee’s report is that “ME/CFS is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients.”  Patients with the disease have always known this and are, understandably, deeply hurt and offended by the denigration they receive from some medical practitioners.
I admire the fact that you believe that people who suffer psychosomatic illnesses should be treated with compassion and understanding but I am equally disappointed that you appear to have failed dismally to keep abreast of current research into ME/CFS. Had people like you in senior positions really tried to discover what is at the root of the symptoms suffered by the patients that you see more progress might have been made in the diagnosis and treatment of this dreadfully neglected disease.
For example, on 30 May this year in Metabolomics Armstrong et al wrote: “Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue patients.” Have you ever thought of metabolic profiling for your profoundly fatigued patients, I wonder? I do realise that there are vast numbers of papers of variable quality published each year, but I really do think that if one is professing an expertise in a particular disease or illness one should try to keep abreast of current research, don’t you?
You appear to be unaware that research shows that ME is an organic multi-system neuro-immune disorder with protean symptomology; some consider it likely to be an autoimmune disease with the target organ being the vascular endothelium.
For the avoidance of doubt, here are some facts that may have escaped you:
•             Since 2005 ME has been included in the UK National Framework for long-term neurological conditions.
•             On 30 January 2006 the then health Minister, Lord Warner, said on record: “There is only one World Health Organisation International Classification of Disease code for chronic fatigue syndrome/Myalgic encephalomyelitis, which is G93.3.” (HL3612)
•             On 2 June 2008 the Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham) stated: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition ….My Lords, I have acknowledged that CFS/ME is a neurological condition.” (HLPQ: Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
•             On 21 November 2011 Lord Freud, Minister for Welfare Reform, confirmed in a letter to me that the Department for Work and Pensions does not consider ME/CFS to be a mental disorder. The letter was unequivocal: “the Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under the ICD code G93.3, subheading other disorders of the brain’. The DWP is in agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder.”
•             The US National Institutes of Health, one of the world’s foremost medical research centres, convened a Pathways of Prevention working group which, in December 2014, published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. It is an important document as it signifies a major change in attitude towards ME/CFS. For example:
“Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS.
“This is not a psychological disease in aetiology.
“fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS.”

As a neurologist, I am sure you will find these views of interest.
Further research from the US posits that true ME (as distinct from the ubiquitous chronic “fatigue”) is indeed an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity ….Profiles of ME/CFS subjects also differed from those of MS subjects, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation as compared with those with MS” (M Hornig et al: Molecular Psychiatry 31 March 2015: doi:10.1038/mp.2015.29)
The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder. 
I do hope that you will take my submission seriously and reconsider your belief that ME/CFS is a psychosomatic disorder.
I look forward to receiving your considered response.
Yours sincerely
Countess of Mar
Copy: David Aaronovitch.
           Chatto and Windus – Lisa Gooding, Publicity.

June 2015
Book Review by Nasim Marie Jafry: It's All in Your Head: True Stories of Imaginary Illness

I imagine the publisher was excited by Dr O'Sullivan's 'ideas' - I saw the words 'groundbreaking' and 'controversial' in one of the blurbs. Imaginary illness carries notions of madness across the centuries, as readers we are intrigued - and seduced. However, having read the chapter 'Rachel', which deals with a young woman with 'ME/CFS' - I can say that the book is certainly not groundbreaking, but rather, in the case of ME, an irresponsible recycling of a dying - very dangerous - narrative, which has been perpetuated by psychiatrists since the nineties. And I'm afraid I find her style to be unengaging and toneless, though I wonder also if that is a kind of clinical constraint.
So her ideas must be sparkling and new if I am to be pulled in.
While vigorously suggesting that patients with myalgic encephalomyelitis (ME) have false illness beliefs, she then bases the entire chapter on her *own* beliefs. There is no evidence whatsoever to prove that ME is psychosomatic. There is however growing robust evidence that ME is a complex neuroimmune illness, and the key to unlocking the puzzle is ever nearer - biomedical researchers worldwide are excited and hopeful about finding a unique biomarker. Dr O'Sullivan acknowledges that there is evidence of immune abnormalities but then chooses to ignore them completely and goes off on her wild somatisation spree. She seems not to *want* the science to progress, so zealous is she in her beliefs.
The whole chapter on 'Rachel' is manipulative and incoherent, illuminating only in what it omits. I know what the gaps are, so I can see the huge holes. She wrongly says that graded exercise (GET) is the most effective treatment, even although this treatment has been thoroughly discredited, it makes patients worse. This psychologising of ME is extremely harmful to patients, as patients and true specialists have been pointing out for years.
I have had virally-triggered ME since 1983 - I was nineteen years old, an undergraduate, unlucky to get a nasty enterovirus - and was diagnosed by a consultant neurologist, after EMG and muscle biopsy and many blood tests, which confirmed abnormalities. I had been ill for eighteen months at the time of diagnosis, steadily getting worse, and, of course, had never heard of ME then, few people had (I didn't go upstairs to my room and google). My initial treatments included a plasma exchange with immunosupression, and anti-viral drugs. And yet Dr O'Sullivan denies hotly in her book that immunotherapy is used for ME, anywhere. She also seems unaware of the anti-cancer drug trial going on in Norway just now. The scientists have recently been in London discussing their trial at an annual ME conference, which attracts scientists from all over world.
She also fails to mention the huge confusion caused by the different criteria for ME - the CFS (chronic fatigue syndrome) label was introduced in late eighties in UK and the criteria for ME were widened and diluted, with the result that anyone with unexplained 'chronic fatigue' was being diagnosed with ME. This conflation of classic ME and CFS has caused a major headache for patients (no pun intended). Patients who do have psychiatric-based fatiguing illness are sometimes being misdiagnosed with ME. The conflation has, naturally, caused immense problems with diagnosis/research; moreover, severely ill/bedridden patients with actual ME are not being included in trials.
O'Sullivan also makes no reference to post-exertional malaise (PEM), which is unique to ME, exhaustion (physical and mental) after trivial exertion, she talks only generally of 'fatigue'. She ignores the disabling cognitive dysfunction. Neither does she mention orthostatic intolerance, the inability to be upright, stand for long, another cardinal feature. She basically excludes all the symptoms of ME in her discussion, bar 'fatigue'. She seems to think managing ME is managing fatigue, and Rachel 'fails'.
I honestly wonder if Dr O'Sullivan truly believes what she has written or if she needed to pad out her book as she didn't have enough real psychosomatic illnesses for the pot. And she knows writing about ME as a psychiatric illness will be immediately controversial - even when she is wrong. Whatever her motive, she has failed spectacularly to keep up with the research and she has insulted not only ME patients but the whole scientific community engaged in ME research.
***Update: I just want to add that this may be one of the most revealing passages in the ME/CFS chapter:
'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'
There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the case study with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.
Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable.

June 2015
Takeaways From The ME Association’s CBT, GET, and PACING Report


The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website) is comprehensive and only part 1 of 2. Part one, outlined below, deals with the qualitative and quantitative analysis of the study data. Part 2 (already underway) will cover illness management techniques from the patient perspective and proposed amendments to the NICE guidelines. Direct quotes from the report are bolded below.
“With regard to the effect courses had on illness severity, we found that GET resulted in the most significant change with more patients who attended such courses reporting their illness had become more severe as a result.”

Graded Exercise Therapy or GET made most patients with ME/CFS get worse. According to the study results, about 75% of people who participated in a GET program felt that their illness got more severe as a result.
Where patients attended a CBT, GET or Pacing course which had no overlapping elements of the other two interventions, more reported an improvement in symptoms following their Pacing course than did those who attended either of the other courses. CBT resulted in 91% of participants feeling their ME/CFS symptoms were unaffected or made worse, GET 88%, and Pacing 55%.
See Graph - http://www.meaction.net/wp-content/uploads/2015/05/Graph-3-4-2a-copy-e1432275095519.jpg
Looking at the numbers, cognitive behavioral therapy (CBT) and graded exercise therapy seem to have a similar result. But when you look at the graphic there’s a very important distinction. While 74% of patients on graded exercise therapy got worse, 73% of people on cognitive behavioral therapy had no change to their condition. For most patients, ME/CFS symptoms were not improved by cognitive behavioral therapy but only 18% reported a worsening of their condition.
It was clear that the majority of patients attending Pacing courses with no overlapping elements found this management approach more appropriate to their needs than did those who attended either CBT only or GET only courses. Only a small minority of GET and CBT courses were appropriate to needs.
Only 8% of those who participated in cognitive behavioral therapy and 12% of those in graded exercise found it improved their ME/CFS. By comparison, 45% (or nearly half) of patients with ME/CFS improved by participating in a pacing course!
Symptoms were reported as having improved or as remaining unaffected by more patients where therapists leading a course recognised ME/CFS to be a physical illness than where therapists believed the illness was psychological. Symptoms were deemed to have been made notably worse where courses were led by therapists holding this psychological belief even for Pacing.
This may be one of the most important distinctions in the report. With a 45% success rate, pacing cannot be considered a surefire treatment for ME/CFS. Instead, the course was dependent on the therapists leading the course. Without an understanding of the physical (not psychological) nature of the illness, the treatment was not as effective. Therapists offering pacing courses should recognize ME/CFS as a physical illness in order to maximize a patient’s chance of improvement.
Patients who were not offered or who were refused courses reported the main reason as being that no courses were available in their area. The second reason was judged to be that many patients were considered unlikely to benefit from the offered courses, and also of note was a lack of access to courses and no available home-visit option.
If patients don’t have access, they’re not going to be able to attend. That’s the main takeaway from this section. Disregarding those patients who had access but chose not to attend an offered course, most patients who didn’t participate did so because they couldn’t. Courses may not be available to those who live far from a major treatment center and especially to the severely ill who lack the ability to leave the house and attend a course.
For those who were on benefits, it was most notable that irrespective of the course undertaken, claims remained largely the same with few reducing or stopping their benefits. However, net overall increases were seen in benefits following courses in CBT and GET compared to a slight decrease from those attending Pacing courses.
Disability benefits were mostly unaffected by participation in any of the courses. But it’s not surprising that there was a slight increase in disability benefits for some patients after participating in cognitive behavioral therapy and graded exercise therapy since many patients became more severely ill. There was also a slight decrease in disability benefits for some after participating in a pacing course, likely due to an overall improvement. But all these changes were small and did not occur for the majority of patients.
We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.
Cognitive behavioral therapy had no noticeable impact for the majority of ME/CFS patients so the report concludes that it should not be considered a primary treatment option.
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
Graded exercise therapy made the majority of ME/CFS patients get worse so the report concludes that it should be withdrawn completely as a primary treatment.
Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.
Pacing won. Out of the three, it showed the most positive results and the fewest negative results for ME/CFS patients. But it’s important to remember that the positive results were more strong when therapists acknowledged ME/CFS as a physical and not a psychological condition.


The News From the 10th London Invest in ME Conference, May 2015

May 2015
You See Just The Tip Of The Iceberg

A message for ME Awareness Week,  10 -17 May 2015
We have an illness called Myalgic Encephalomyelitis
. You may know it as ME or Chronic Fatigue Syndrome.
You will rarely see us. Like the iceberg below water, 90% of us are invisible. We are at home, in bed. When you do see us, we look OK. Slow, pale and drawn, yes, but you will see no scars or bandages. Yet we are very ill.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death but we are treated as though we just lack the will to do something. When young, this devastating illness is the biggest cause of long term absence from school. It robs us of our youth. When older, we lose our jobs, friends, and often our carers. That’s what our illness does.
The 10th of May is the start of ME Awareness Week. The ME Association has a very simple message. “Take ME seriously”. With your awareness and understanding, we can change the damaging perceptions of this illness and help to improve the lives of those who face it.
Neil Riley
Chairman, The ME Association


May 2015
The 25% ME Group  - 20 Years of Supporting People with Severe ME

Press Release
In 1995 a number of people were suffering from a condition known as ME (Myalgic Encephalomyelitis). These people were extremely sick and disabled with the illness.
They felt alone, isolated and unaware that they were not actually alone in their suffering.
Sufferers wondered what the cause of their illness was?  Why were they  suffering from this? Were they imagining they were the only ones who were so ill? The medical profession seemingly could not understand this illness or do anything to alleviate the suffering caused by it.
Those who were severely affected at the time felt there was nowhere to turn for help, information or advice. (Even the established ME charities did not seem to recognise the severely affected).
Some of these people then decided to form a group specifically to try to support the severely affected, namely the 25% ME Group.
The 25% ME Group started very small. We provided a newsletter and a contact list of people who were severely affected. The group has grown over the years from a handful of people to many hundreds of members. The group provides information and various services to help and support those who are very sick with the illness. In addition, the group also provides information for carers and professionals.
From small beginnings, the group has grown into an organisation that brings light and a sense of being believed to these very ill people and also, very importantly, we remind them they are not alone.
Further information about the group:     The 25% M.E. Group is a unique nationwide community based voluntary group. We have two paid members of staff and a number of volunteers - most of whom have severe M.E. We provide a range of services to people affected by severe M.E.
Because of the intensity of the symptoms and disabilities experienced by severe M.E. sufferers we seek to alleviate the isolation which having this illness can cause.  The 25% M.E. Group encourages: communication between members; participation in the Group at a number of levels; assistance with articles and information for the newsletter etc. These are just some of the initiatives employed by the group.
What is M.E:     Myalgic encephalomyelitis is characterised by a combination of muscle pain (myalgia), and neurological and cognitive symptoms such as memory loss and concentration difficulties (hence ‘encephalomyelitis’).
Clinical symptoms have been found to be consistent in over sixty recorded epidemics of M.E. spread all over the world. Patients had disabilities due to persistent symptoms of pain, fatigue and loss of endurance to normal physical activities, with abnormal muscle fatiguability and conspicuous deterioration of symptoms after exercise (post exertional malaise).
For further information please visit our website at http://www.25megroup.org/home.html  or contact us by email on: enquiry@25megroup.org

April 2015
Mitochondrial dysfunction and the role of cytokines in ME/CFS: Preliminary results from research being funded by The MEA Ramsay Research Fund and the Medical Research Council | 2 April 2015

From The FASEB Journal, published by the Federation of American Societies for Experimental Biology, April 2015.
The Role of Cytokines in Muscle Fatigue in Patients with Chronic Fatigue Syndrome (CFS).
Kate Earl(1), Giorgos Sakellariou(1), Daniel Owens(2), Melanie Sinclair(1), Manuel Fenech(1), Graeme Close(2), Clare Lawton(3), Louise Dye(3), Micheal Beadsworth(1) and Anne McArdle(1)
1) Institute of Ageing and Chronic Disease University of Liverpool United Kingdom
2) RISES Liverpool John Moores University United Kingdom
3) Psychological Sciences University of Leeds United Kingdom
CFS is characterized by profound levels of persistent/recurrent fatigue. It is proposed that chronic, low level inflammation may play a role in this fatigue.
We recruited 100 untreated patients with CFS (average age 33±12) and 100 age and sex matched healthy controls (HCs).
Serum levels of TNF-α were assessed using ELISA. Subjective fatigue was determined by questionnaire and muscle function tests were undertaken in subgroups in which maximal voluntary contraction (MVC), electrically stimulated muscle force generation and rate of fatigue were assessed in the quadriceps muscle.
Subjective fatigue was higher in patients with CFS compared with HCs. Preliminary analyses showed that serum TNF-α was undetectable in 97% of HCs, whereas 15% of patients with CFS had detectable (4.4+/-0.18pg/ml) serum TNF-α. MVC was significantly reduced in subjects with CFS compared with HCs.
No difference was seen in stimulated muscle fatigue between groups.
This preliminary data suggests that a sub-group of patients with CFS may have low level inflammation and analyses are underway to further characterise other inflammatory markers in serum and muscle of these patients and to determine whether such changes could affect indices of muscle function or central fatigue.
Funded by MRC, BBSRC and the ME Association.

April 2015
IiME 10th International ME Conference

Welcome to London for the IIMEC10 International ME Conference for 2015.
Invest in ME is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME.
IIMEC10 is the tenth annual CPD-accredited biomedical research conference organised and hosted by the charity and now attracts presenters, researchers, physicians, patient groups and journalists from around the world.
Below one will find a description of the conference, how to register, the venue and details of the presenters.
Research into Myalgic Encephalomyelitis - specifically biomedical research into ME - has, thanks to conferences and research meetings organised by Invest in ME, emerged into the mainstream of research and is receiving increasingly more attention from both major research institutes in several countries as well as national health organisations.
Organisations responsible for medical research in several countries have already stated that ME would receive more urgent attention. In Norway the Norwegian Health Directorate have allocated funding for biomedical research into ME following the 2011 double blind randomised clinical trial using Rituximab (Anti-CD20 monoclonal antibody) by Fluge et al (PLoS 6:10.Oct 2011) to successfully treat ME patients. There is increasing research evidence of immune dysfunction in ME patients.

The UK MRC has previously stated - "There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes." The IIMEC10 conference will show some of the major initiatives being taken to set up a collaborative strategy for biomedical research into ME to further this complex but exciting area of research leading to appropriate patient care and mainstreaming this field of research as well as this disease.
The conference will appeal to healthcare professionals, doctors, nurses, paediatricians, occupational therapists, researchers, ME support groups, people with ME and those working in social services, educational support and the media. The conference provides an opportunity for people within government, health departments, social services and education to be able to be informed of the true nature of ME and of the current status of diagnosis, treatment and current/future biomedical research possibilities.
If help is needed regarding any aspect of the conference please use our Contact Us page. On the conference day the charity will have a number of helpers to assist from the point of registration through to the end of the day. Our main web site is at www.investinme.org
IIMEC10 will be our tenth annual international conference for ME. The conference regularly attracts clinicians, researchers, healthcare staff, charities, support groups and patients and carers from twenty countries around the world.This allows unique networking opportunities and increase the potential for one of the charity's main objectives - international collaboration between researchers.
Read More
Download The Conference Leaflet

March 2015
ME/CFS: Frontiers in research, clinical practice and perception

Margaret Mar, Countess of Mar. Presentation to the Royal Society of Medicine.
"The Politics of ME/CFS"
18th March 2015.
ME/CFS: Frontiers in research, clinical practice and perception.

Ladies and gentlemen, I am grateful to the Royal Society of Medicine who have given me the opportunity to offer a political view of ME/CFS.
I will have been an Independent Crossbench member of the House of Lords for forty years in the autumn. For more than twenty of those years, with the help of a great many other people in the community, I have been trying to persuade governments of different colours that ME/CFS, together with organophosphate sheep dip poisoning, Gulf War Illnesses, Aerotoxic syndrome and other medically unexplained physical symptoms, known as MUPS, are not figments of patients’ imaginations, nor are they nocebo effects, but are very real conditions.
In so far as ME/CFS is concerned I have had some support fromMembers of Parliament who have constituents with the illness, but have been ploughing rather a long and lonely furrow in the Lords. For the sake of brevity, I will call the condition ME, which is what most patients prefer, except where accuracy demands otherwise. I know that the medical profession uses the shortcut term CFS, but that covers a much wider range of conditions that what I know of as classic ME.
I came to ME through parents who had used OP head louse shampoos on their children – treatments recommended by doctors and school nurses. Some children developed symptoms which were labelled ME within months of the treatment. I don’t know whether you recall that the advice was to shampoo the child’s head and, without rinsing, cover the head with a shower cap and leave overnight, to be rinsed off in the morning. Anyone with any knowledge of OPs knows that one of the most absorbent parts of the body is the scalp, and that some individuals are more genetically susceptible than others; so these poor children were poisoned.
Very unfortunately, once a person, be they child or adult, has the ME label all support and assistance from the medical profession and social services seem to vanish into thin air. Despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10G93.3 and this classification being accepted by Ministers of both the Department of Health and the Department for Work and Pensions; despite major reports, one by the Chief Medical Officers working group on CFS/ME in 2002 and two others by the All Party Parliamentary Group on ME in 2006 and 2010, all of which recognise the severe impact that this disease can have on many patients’ lives, far too many of those professionals treating and caring for people with ME have not received the message. The CMO Report mentions that “The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconsistent illness.” Despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long.
All Party Parliamentary Groups are supposed to be for the enlightenment of Members of Parliament from both Houses. The purpose of the APPG for ME is to: “Raise awareness of ME and support the improvement of health, social care, education and employment opportunities for people affected by ME.” There was a problem with communicating with Ministers effectively at what turned out to be large public meetings with few MPs present. After consultation with the leaders of the main ME charities and support groups, Forward-ME was formed in 2008 under my chairmanship. We have met successfully with people such as Steven Holgate, Lord Freud, Edward Timpson MP and ATOS as well as others in the health, social care and education world and are, I believe, respected for the respect that we show to each other and to our speakers. The APPG was re-formed in 2010 on these same principles and we now work together very happily, though meetings are still attended by very few MPs.
When we think of politics we tend to think of party politics– what goes on in the Westminster village, in local government or at the parish pump. It was a while before I recognised that amongst other settings there are medical politics. Until the 1980s, when the Press picked up on the ‘Yuppie flu’ diagnosis, there seems to have been tacit acceptance that ME was a real physical condition even though the cause was then, as it is now, unknown. There were a number on notable British doctors, amongst them Dr A Melvin Ramsay, who flew the flag for Myalgic Encephalomyelitis from the 1950s onwards, Dr Elizabeth Dowsett, Dr Alan Franklin and Dr John Richardson who, from their observations of ME patients over decades, were convinced that ME was caused by persistent viral infections. This persistence would appear to be confirmed by Dr Mady Hornig and Dr Ian Lipkin at the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in their 27 February 2015paper – ‘Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment’, who have identified distinct immune changes in patients, said to represent the first robust physical evidence the ME/CFS is a biological illness as opposed to a psychological disorder., though I readily acknowledge that we still have a long way to go.
It was when a small group psychiatrists from the UK, Europe and the USA purloined ME and renamed it CFS in the mid-1980s that the real problems began. They insisted that it was a psychosocial behavioural problem that could be readily overcome with a course of cognitive behavioural therapy and graded exercise. From their earliest beginnings, they managed to attract the attention of the media and of their medical colleagues with their assertions. They found their way onto government advisory committees and research organisations; onto the boards of medical publications and into insurance companies where their message was greeted with apparent delight because these organisations would not have to think any more. The cause and solution were at hand. No need for doctors to do too many investigations; no need to perform anything but psychological research; no need for social security payments by finding that claimants are really fit for work. They developed a means of stifling opposition by refusing to publish papers showing biological causation and, joy of joys for the insurance companies found that patients were reporting a psychological condition which was excluded in their policies. As recently as last year CFS was described as ‘a culturally driven disorder with no known organic cause’ in the BMJ.
This school of psychiatrists has persisted in their view despite more than 6,000 peer reviewed papers, including experimental studies which demonstrate a range of biological findings associated with people with ME. Funding for biological causes and treatments is miniscule against the funding for psychiatric or psychological ones. Researchers such as those funded by Invest in ME and ME Research UK, have funded excellent pilot and seedcorn studies on a shoestring, while a significant number of biomedical research applications have not been funded by the MRC in the past 20 years, including some targeted at pathophysiology. It is hard to believe that all were written so badly that they could be rejected, particularly as some came from established researchers with a track record in this and other fields. Could it be that the expert reviewers were, once again, psychiatrists who appeared to have an interest in supressing research that counters their views? Many suspect this to be the case. This can only be political. It is also political suicide for researchers in major universities to suggest that they conduct studies into biological causes for ME.
The largest and most expensive state-sponsored treatment studies (the PACE and FINE trials) which both focused exclusively on psychosocial management cost in excess of £6 million, dwarfing funding for biomedical intervention, yet both failed to show improvement on real-world outcome measures. These huge sums have taken us no nearer to finding a cure or the underlying cause.
There is a silver lining – more recently MRC funding has been targeted on more biological research, though the amounts of funding allocated are still miniscule in relation to that for other diseases.
It is extraordinary to me that men and women who are trained to “First do no harm” and to “Listen to the patient for they will probably tell you the diagnosis” cannot but be aware of the enormous damage they are doing to a very large number – more than 200.000, patients with this condition. By recommending that too many investigations should not be conducted because they encourage illness behaviour they are risking missing vital findings of treatable conditions such as endocrine dysfunction, rarer medical conditions or even cancers that present with chronic fatigue. How, with all the publicity, can they not be aware of the misery, neglect and, too often, abusive treatment that I can only describe as barbaric that is meted out to patients with a diagnosis of ME?
I am aware that multiple sclerosis, Parkinson’s disease and diabetes were all once in the domain of the psychiatrists and that this domain is shrinking as new discoveries are made. To compensate, we have a compendium of purely subjective conditions with labels such as conversion syndrome, pervasive refusal syndrome, and neurasthenia to name but a few. There is no biological explanation for these, but they do help the uninitiated to believe that the condition is psychological.
How can we change this situation? Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the last century wrote:

“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted.
It would create a feeling that is extremely uncomfortable, called cognitive dissonance.
And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”
Ladies and gentlemen, I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.

March 2015

By Jane Colby of the TYMES Trust
Since my last blogpost on the stages of ME, some of you have raised questions about cases that sadly don't ever seem to go into remission, or improve enough for people to enjoy a reasonable quality of life. That's what I am addressing here, grounded both in my own experience and in the knowledge of others. It is part of the spectrum of this disease, and we need to see the whole picture.
I first met microbiologist and ME specialist Dr Elizabeth Dowsett in 1985 when she diagnosed me with ME. Shortly afterwards, she telephoned with the news that my blood tests had revealed a recent infection and several weeks after that, other tests, being analysed as part of a research procedure, showed that the causal agent was the enterovirus (or gut virus) Coxsackie B. In ME, it often is, as she explained. Coxsackie viruses are related to polioviruses, being part of the same family.
What I didn't know at the time – do any of us? - was that mine would develop into almost the worst case of ME that Dr Dowsett had ever seen. I won't attempt to describe that here, although I do intend to publish a personal memoir to convey something of the dramatic severity and trauma associated with that level of disease.
When, years later, I came to interview Dr Dowsett, after a painful endurance test while my body struggled to repair itself, she made clear to me that whilst the body will do its best for us, sometimes it just can't get the job done.
If she was right about the persistence of virus in our tissues (and I have no reason to think she wasn't, given Dr John Chia's discoveries of viral particles persisting many years later in the stomach lining of patients) then we never truly 'recover' in the pure terms of totally eliminating the invading organism. But that happens with other organisms too, such as the herpes virus that causes some people to get recurrent cold sores when they are run down. Most of the time it doesn't bother them. This is a way that the body has learned to accommodate invaders rather than always mounting a deadly battle.
Some people who have been through ME seem to reach periods in their lives when they joyfully find themselves capable of physical things they thought they wouldn't be able to do again. After the worst years, some of us find other, gentler, physical things to replace those we can no longer manage. Can we call any of this 'recovery'? It's an odd word, as people use it in their own way, and even researchers have to define what they mean by recovery, which might not be what we would mean.
I have limitations that have never totally gone, and I live my life around certain restrictions. The R word is bandied around too loosely, but if by 'recover' we mean that we are totally 'over it' forever, then that idea does not seem to be reflected in what happens inside the body. What can happen is an accommodation with the virus that caused the ME in the first place, a sort of equilibrium. This balance, however, can be upset, and indeed, is apparently not reached in every case.
If you haven't read my previous blog post IT'S THE IMMUNE SYSTEM, RIGHT? I would prefer that you read it now, before continuing with this one. It's not all that long. Just scroll down and look through it. Because the next few paragraphs are a bit scary, and if you're feeling upset, miserable or frightened because of what's happening to your body, it's a good idea to reassure yourself by learning how the 'tendency' in ME (as explained to me by Dr Dowsett) is for the body to improve over time as it tries to do what it's programmed to do – heal us. Often this happens in spite of, rather than because of, any therapies or medications or alternative treatments that others recommend.
The body has been injured, damaged. We must look after it, love it, praise it and trust it to do its very best. We must take good care of ourselves and not let people pressurize us into doing things that will interfere with that healing process.
The last thing we want is to provoke a deterioration, even as we naturally try new things when they seem possible. Keeping a balance is important. As I've personally experienced, once a serious setback has happened, it can be a long haul to get back to our previous level of improvement. And we don't even know if we'll get there; uncertainty is perhaps the worst thing of all. What will my future be? We must give it our best shot.
Go off now and read my previous blogpost...
Welcome back. I hope you found that information encouraging. We must, however, validate the experience of those who do not 'recover', for no fault of their own. And we must not hide away the unpalatable truth, that some people suffer continually in darkened rooms unseen by the world. As the Chief Medical Officer's Working Group Report stated in 2002: Overall, there is wide variation in the duration of the illness, with some people recovering [that word again] in less than two years, while others remain ill after several decades. A minority of those with CFS/ME remain permanently severely disabled and dependent on others.
That is a sobering statement. Dr Melvin Ramsay wrote of the spectrum of cases, including one case that had at the time of writing lasted 40 years. He stated: I am fully satisfied that at a conservative estimate 25% of victims of ME have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.
Ramsay was comparing the real, classic, historic ME with other forms of postviral syndrome. Dr Chia's 21 century work corroborates what Ramsay documented, showing double stranded enteroviral RNA present in the stomach lining of patients after 10 years. He is quite adamant that this is a causal relationship, with the level of symptoms reflecting the degree of what I would call infestation.
Ramsay describes two forms of chronic ME. One form shows a recurring cycle of remission and relapse, with remissions lasting as long as three years in his experience. The second form is more tragic in that no remission occurs. He talks of the restricted lifestyle of these patients, and adds: A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature.
I myself find it more comfortable not to lie totally flat when sleeping, and this is a fascinating analysis of why that might be. Despite the persisting weakness in some of my muscles, I am constantly amazed at what my body has managed to achieve. But I try not to take it for granted.
What have others had to say? In a paper published in 1994 by the Nightingale Foundation in Canada, Byron Hyde MD and his colleagues reported that out of 1826 respondents to their survey, the average length of illness was approximately seven years. They found only a two per cent recovery, which, they said, 'suggests that the large number of pharmaceuticals, alternative medicines and various treatments used' had been 'largely ineffective'. We are now 21 years on from that statement, and if anything, we are in a worse situation, with exercise regimes and psychological therapy having provided one huge distraction. We see muddled terminology, mixing of patient groups under the banner of 'CFS', and often misguided treatment. I particularly see this in regular reports from parents stating that their children have been made worse.
In my view, until both the research establishment and Government truly accept the viral nature of this illness, and do something about developing targeted antivirals, and vaccinations, as they have done in other serious disease, it will continue to be down to us as individuals and families to resist over-demand and to insist on taking the very best care of ourselves in order to maximise our chances of 'recovery'.
In my book, I am revisiting my interview with Dr Dowsett and her work. She goes into some detail about the dangers of ignoring the true nature of ME, and what that can lead to.Which is not nice. Not nice at all.
ME has to be taken seriously. That's why I continue to shout about it. To anyone who will listen.
Jane Colby

March 2015
Distinct plasma immune signatures in ME/CFS are present early in the course of illness

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an unexplained incapacitating illness that may affect up to 4 million people in the United States alone. There are no validated laboratory tests for diagnosis or management despite global efforts to find biomarkers of disease. We considered the possibility that inability to identify such biomarkers reflected variations in diagnostic criteria and laboratory methods as well as the timing of sample collection during the course of the illness. Accordingly, we leveraged two large, multicenter cohort studies of ME/CFS to assess the relationship of immune signatures with diagnosis, illness duration, and other clinical variables. Controls were frequency-matched on key variables known to affect immune status, including season of sampling and geographic site, in addition to age and sex. We report here distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease duration revealed that early ME/CFS cases had a prominent activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks. We found a stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static. These findings have critical implications for discovery of interventional strategies and early diagnosis of ME/CFS.
(To read the whole article, click on the link above.  A PDF version can be downloaded by clicking here.)

Quo vadis, Science Media Centre?
Yesterday saw some positive media headlines for the ME community. The research from Columbia University by Hornig et al, concerning the level of cytokine activation as a potential biomarker for ME, looks promising[1]. ME research indicating a biological pathology is often dismissed due to the small number of participants but this was a study comprising 298 ME patients and 348 controls, which will hopefully give it more weight in scientific circles[1]. Unfortunately, as is usual with UK media coverage, reporting was not unequivocally positive; the difference in tone between the UK and US media coverage was marked. In the former, most of the usual suspects promoting the psychogenic paradigm were quoted, aided by the Science Media Centre (SMC). There is little hope of this group of psychiatrists going quietly into the night and we will probably experience a backlash from that quarter; they have much to lose if and when the psychogenic model of ME is discredited and the disease is proven to have a biological foundation.
Regarding specific coverage: ‘First Biological Proof that ME is Real Found by Scientists’ states the Telegraph’s headline[2]. Hardly the first given the thousands of papers published showing biological abnormalities in ME patients, and proof is a charged term in science but quite a good headline for a British newspaper (to be fair the ME Association’s reporting was hardly exemplary[3]). The Independent lives up to its usual poor standards when reporting anything ME related; its headline, ‘Scientists Claim to have ‘Robust’ Evidence that ME has a Biological Cause'[4], being especially bad. Note the use of the word claim and the inverted commas around robust and contrast this with their reporting of the PACE trial based research a few weeks ago, ‘Sufferers of Chronic Fatigue Syndrome can Benefit from Exercise'[5]. No doubt is expressed there in the veracity of the researchers’ claims, the suggestion that ME sufferers can benefit from exercise is stated as fact.
The Science Media Centre surpassed itself in its coverage of the Columbia University study[6]. Of seven experts chosen to respond to the study, not one gives a positive analysis, no medical adviser from an ME charity or, non-psychosomatic promoting, ME researcher is quoted. The featured experts are:
Professors Michael Sharpe and Peter White, and Dr Esther Crawley, all notorious proponents of the psychogenic ME model
Professor Stephen Lawrie, head of The Division of Psychiatry at the University of Edinburgh: ‘This is a small study’ he states[6]; a study encompassing 20 participants is small professor Lawrie, one involving over 600 participants is not[1]. One has to ask why is a psychiatrist being consulted?
Professor Derek Hill, a professor of Medical Imaging Science with no known expertise in the field of ME[7]
Professor Naveed Sattar: Professor of Metabolic Medicine at the University of Glasgow. He does have expertise in the field of biomarkers but has shown zero interest in the field of ME research heretofore[8]
Dr Diana Prata: Group Leader, Institute of Molecular Medicine. Again, no evidence of any interest in the field of ME research[9] ‘This specific illness is not in my area of expertise’ really? Yet the SMC calls you an expert[6].
If the SMC wanted to skew their response towards dismissing the Columbia study and avoid undermining their preferred psychogenic model of ME it would be hard to choose better sources of expertise. The study is by no means flawless or conclusive (what study is?) but it’s a better piece of work than the SMC would lead you to believe. Connie St Louis, former president of the Association of British Science Writers and a senior lecturer at City University, has detailed the SMC’s malign influence on media reporting of scientific stories in the UK[10], revealing that over half of the SMC’s expert reactions were covered in the press and in nearly a quarter of stories, the only quotes were from the SMC[10]. Louis states ‘The SMC never claims to deliver a balanced [argument], so it’s really interesting that many of them weren’t using somebody independent of what the SMC offered’[10]. The SMC’s media briefings are reported uncritically, with 60 per cent of articles based on their information containing no non-SMC mediated sources[10]. This is especially relevant concerning ME coverage in the British media and explains its bias towards reporting research from the psychogenic realm[11].
We recently published a blog post concerning a vitriolic article about ME sufferers from the University of Toronto’s Professor Edward Shorter[12]. One of the particularly insightful claims made in his piece was,
‘There have been no convincing new studies, no breakthrough findings of organicity, nothing.
And there never will be.'[13]
I’m not quite sure why he split the sentence up, no doubt to enhance the effect of such a momentous, nay paradigm-shifting statement, but it looks more foolish now than it did a week ago, which is quite an achievement. Needless to say Professor Shorter’s scientific knowledge is zero, I’m only surprised the SMC didn’t choose him as one of their expert commentators on the Columbia study.
A serious point to finish: let us not forget Karina Hansen, currently being ‘treated’ by Per Fink and his followers in Denmark. I believe forcibly removing a young woman from her home to an institution that restricts her liberty, access to her family and subjects her to who knows what form of ‘therapy’, is nothing less than torture. I also find it disturbing that it is another case of a young woman being abused by middle-aged male members of the medical profession. The current climate surrounding ME, ‘all in the mind’, ‘lazy malingerers’ etc. encouraged by the likes of Wessely, White and Sharpe (and formerly by Beard at al), has allowed such cruelties to be inflicted on ME patients. Hopefully we are coming to the end of this era of abuse and can look forward to more biomedical research and effective medical therapy, consigning the over-used biosocial model and psychogenic explanations for physical illness[14] to the dustbin of history.
1) http://advances.sciencemag.org/content/1/1/e1400121 (accessed 28/02/2015)
2) http://www.telegraph.co.uk/news/science/science-news/11440372/First-biological-proof-that-ME-is-real-found-by-scientists.html (accessed 28/02/2015)
3) http://www.meassociation.org.uk/2015/02/us-scientists-claim-robust-evidence-that-mecfs-is-a-biological-illness-columbia-university-press-release-27-february-2015/ (accessed 28/02/2015)
4) http://www.independent.co.uk/life-style/health-and-families/health-news/scientists-claim-to-have-robust-evidence-that-chronic-fatigue-syndrome-has-biological-cause-10075856.html (accessed 28/02/2015)
5) http://www.independent.co.uk/life-style/health-and-families/health-news/sufferers-of-chronic-fatigue-syndrome-can-benefit-from-exercise-9976254.html (accessed 28/02/2015)
6) http://www.sciencemediacentre.org/expert-reaction-to-biomarkers-for-cfsme/ (accessed 28/02/2015)
7) http://cmic.cs.ucl.ac.uk/staff/derek_hill/publications/ (accessed 28/02/2015)
8) http://www.gla.ac.uk/researchinstitutes/icams/staff/naveedsattar/ (accessed 28/02/2015)
9) https://kclpure.kcl.ac.uk/portal/en/persons/diana-prata%28006c6374-87dd-477e-81e6-aeb9d710b956%29/publications.html (accessed 28/02/2015)
10) http://m.scidev.net/global/journalism/feature/uk-s-science-media-centre-lambasted-for-pushing-corporate-science.html (accessed 28/02/2015)
11) http://www.irishtimes.com/culture/unthinkable-how-good-are-we-at-spotting-propaganda-1.2109790 (accessed 28/02/2015)
12) http://uttingwolffspouts.com/2015/02/26/hate-speech-is-not-knowledge/ (accessed 28/02/2015)
13) http://www.freezepage.com/1424484834CZFJDNHSFV  (accessed 28/02/2015)
14) Kennedy, A (2012). Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses. CreateSpace Independent Publishing Platform

February 2015

By Jane Colby of the TYMES Trust
Not many people will have missed the hoohah about SEID - Systemic Exertion Intolerance Disease - as a proposed new name for ME/CFS. You'll be relieved to hear, this is not going to be a dissection of the IOM report. That's not what I'm writing about.
I'm going to write about ME, and about why, no matter how many names people come up with for the composite 'CFS', ME itself remains what it always was. Myalgic Encephalomyelitis. Well defined by Melvin Ramsay back in the 20 Century. A discrete disease, and not exactly what we would call “benign” (a prefix that was originally attached).
It's six months since I posted here on my Stripeysocks blog (as you see, I've broadened my remit to include Spotty Socks when available... ). Thanks for the messages asking me to post again. The reason I was away was simple. Myalgic Encephalomyelitis. As those of you with ME will know, even if you're much recovered, the chances are that you still have to pace yourself. So do I. 2014 was Tymes Trust's 25 Anniversary Year. That was demanding so much of my energy and time that something had to give. It's good to be back.
Sitting beside me is a copy of Melvin Ramsay's monograph: The Clinical Identity Of The Myalgic Encephalomyelitis Syndrome (second edition). If only the medical establishment had properly adopted his clear description of ME back then, we might never have suffered the indignity and nonsense that is Chronic Fatigue Syndrome, nor rushed willy nilly down that blind alley. “It is fortunate,” he writes, “that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.”
So there you have it. A “sharp contrast” to ALL other forms of postviral fatigue syndrome.
Anything that does not display the clearly defined features of what I have myself referred to as “classic” ME (I'm glad to see how popular that adjective has become) is simply not ME. It is something else, and deserves to be properly diagnosed in its own right.
All this muddled thinking that CFS has engendered has led to patients with genuine ME getting mixed with patients who have something else. No illness can be accurately diagnosed while all are labelled CFS - or worse, chronic fatigue, a symptom of multiple diseases. Many of you will know that I've written about this issue since the 1990s. It can't be repeated too often. People have been short-changed, fobbed off, and some even put in serious danger by being given inappropriate therapies, or having what was cancer labelled as fatigue.
Here is what Melvin Ramsay wrote. It could hardly be clearer.
The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:
A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.
B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,
C. An alarming tendency to become chronic.

He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.
Once you mix different forms of postviral fatigue together you end up with doctors who can't understand why a child diagnosed with CFS can be severely ill for years. They make extraordinary statements like “You've been ill for too long,” and call in psychiatrists and social workers to probe the family and the child's mental state. They may be accustomed to seeing more common types of postviral debility, quite likely under the label of chronic fatigue, and simply don't know that in with those there will be cases of the 'real thing', the genuine article, ME in all its variability, potential severity and chronicity (duration of illness).
On chronicity, Melvin Ramsay writes of the “alarming tendency” of ME to become chronic. This is “the final distinguishing feature from all other forms of postviral fatigue syndrome”.
At the time of writing, he knew of people who had suffered with ME for over forty years. He states, unequivocally: “I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.” Finally, he comments on the “recurring cycle of remission and relapse”, and on “tragic” cases that do not remit.
Given these sobering facts, it must surely be obvious to anyone, lay or medical, that we must allow children with ME, and adults too, to convalesce and recuperate in a genuinely conservative manner that supports the body's own healing mechanisms. The last thing we should be doing is pushing the body before it has healed enough to do what is being demanded.
I said I wouldn't write about SEID but I will say this: to be diagnosed with SEID, the patient must exhibit an intolerance to effort. That in itself narrows things down. If the definition requires that effort makes the patient worse, we're coming closer to ME itself. The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases.
I don't think I'm breaking a confidence to say that I'm expecting some new evidence of the type of neurological damage caused by inflammation in ME to become available during 2015. Given that the IOM committee will review in five years, by which time there may be more revelations, I find it very unlikely that there won't be - even in their opinion - sufficient evidence of inflammation for them to agree: Myalgic Encephalomyelitis ('itis' meaning inflammation) was an appropriate name all along.
Footnote: Those of you who've been reading the episodes of my book will know that it's the close relation between ME and polio that I focus on there.
Jane Colby

February 2015
The IOM Disaster
Taken from the ME Global Chronicle No 9 February 2015

The IOM recently published its report into ME and has renamed the illness to Systemic Exertional Intolerance Syndrome (SEID). This will be a controversial decision and will encounter considerable opposition from patients and doctors. Let us look carefully at the facts.
The name itself tells us nothing about the illness as many illnesses including Cancers and MS cause substantial “exertional intolerance”. Yet these illnesses do not have “exertional intolerance” in their name. The report accepts the illness as a serious biological illness but fails to accept this and quantify this in its diagnostic criteria. Unfortunately the new IOM criteria uses most of the same criteria used in the Fukuda criteria of 1994.
It uses a substantial reduction in physical activity and profound fatigue lasting for more than 6 months unrefreshing sleep and cognitive impairment. The addition of Orthostatic Intolerance being the only new addition to the criteria. What about the immune system abnormalities? the mitochondria abnormalities? the neurological abnormalities? the HPA axis abnormalities? the infections consistently found? the cardiac abnormalities? the genetic abnormalities? the gastrointestinal and microbiome abnormalities? These important biological factors were omitted, left out.
The IOM diagnostic criteria is far too vague, loose unclear and ambiguous. The IOM criteria cannot diagnose or treat any illness. The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient. This is extraordinary, as medicine and science is about identifying and establishing facts and not about making assumptions and presumptions regarding fatigue for 6 months or more.
The new IOM criteria does not deconstruct this complex multi-system illness illness into it’s constituent parts so as to diagnose and treat with precision. This means that patients will not get a proper of diagnosis of ME / CFS or SEID and thus they will not get proper treatments.
Millions of patients will continue to be left in a limbo and many of these will continue to be vulnerable to premature deaths as a result. The following list is a sobering reminder of what happened in the past when vague, ambiguous, unclear and loose criteria were used to diagnose the illness - http://www.ncf-net.org/memorial.htm
In addition the IOM criteria includes co-mormid illnesses in the diagnosis of SEID, and Depression and mental illness are included. This means many of those people with Depression and other mental illness will qualify for a diagnosis of SEID or ME / CFS. This will add these patients to the mix of SEID and ME/CFS patients and this will confuse doctors and researchers, and cause inconsistent research findings and further confuse the research field and the meta analysis of papers. It’s a disaster. It is this inability to accept well known biological makers for the immune system, mitochondria, neurological system, HPA axis, heart etc. which condemns doctors, researchers and civil servants to continue to repeating the same mistakes over and over again, while patients suffer, become more frustrated, and die.
The malign influence of some London psychiatrists continues in the field of ME / CFS and this is evident in the new IOM criteria. The emphasis on fatigue and exertion intolerance and the omission of biological markers proves this point. The excessive research monies wasted by the NIH and British government and other EU governments on CBT, GET and other psychiatric nonsense has robbed the field of quality research into biological factors for over 20 years. Yet despite these setbacks, there are many high quality research papers proving consistent biological makers in the illness.
There are some known biomarkers for the illness – http://www.me-ireland.com/ - Biomarkers - and some forward thinking medical clinics which use these and diagnose and treat the illness - http://www.me-ireland.com/ - Diagnosis and Treatment . The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015. The Open Medicine Institute (OMI) is continuing to fund raise for high tech research into ME /CFS combining immune system, neurological system, gastrointestinal, genetic and endocrine factors in a large research project. This will produce some findings by the end of 2015. The Rituximab and Microbiome projects in Britain are due to begin soon. Also Dr. Lipkin’s microbiome study is to begin in the near future. These provide realistic hope in terms of identifying all biological markers for the illness.
The fine art of deconstructing complex, multi-faceted systems / illnesses into their component parts and understanding their nature and their dynamics and linkages with each other has been lost. The old educational style which focussed on the Trivium form of learning has been replaced with new types of education emphasising superficial analysis and learning, and hasty, inadequate solutions. The quick analysis, the superficial diagnosis, the speedy dismissal, the soundbite, the inability to listen carefully and to investigate, the shallowness of assumptions and presumptions, the lack of depth, the lack of curiosity, the lack of deeper facts and meaning, the lack of clarity are all too common today. This is blocking scientific and medical progress and condemning many people to mediocrity, low quality and failure, and is causing great suffering and frustration for many people worldwide.
David Egan

February 2015
Conservation Of Energy: Children with ME

From the TYMES Trust
With the latest media splurge reading like an advertisement for Cognitive Behaviour Therapy and Graded Exercise Therapy as the answer to ME, families facing child protection investigations must have been reeling in horror. Tymes Trust has now advised 139 families in connection with such procedures, and in a number of these cases the authorities are trying to enforce these very treatments against the parents' will.
If we go back a stage, we find that the authorities have, almost without exception, seemed to believe that children with ME can recover while following a graded school attendance programme; this is of course just an educational version of graded exercise, as we have so often pointed out.

In our experience, it rarely works well, unless the child is either already substantially recovered, or does not have ME at all - which may well be the case, given that 'CFS' criteria are inventions that pull in people with other 'fatiguing' conditions, and this is the diagnosis that is most often used at the moment.
For classic ME, education in the home CONSERVES ENERGY and is more productive, both in terms of convalescence and educational achievement. This is not just an unsubstantiated opinion, but comes from the practical experience of families who have never looked back after deciding to home educate. This really is not surprising, since one of the three principles for managing ME, according to the great ME expert Dr Elizabeth Dowsett, is CONSERVATION OF ENERGY.
However, state education is the child's right. It should be possible to put in place systems of education that do fulfil the aim of conserving energy, without the family necessarily having to remove their child from the school roll and home educate. Virtual education and home tuition can both play a part for families who wish to stay within the state system during what may be a long recovery process. There should be no pressure on a child with ME to get back to school unless they are clearly strong enough to do so without their health or ability to learn being adversely affected.
With all the physical demands that are placed on a child just to get dressed and get to school even before any lessons are attempted, together with the effort needed to move around the school, socialise and carry bags, the typical state approach of graded school attendance for children with ME is frequently unworkable.
When it fails, and if the authorities then prove intractable in their approach, child protection procedures may be used to enforce the programme. And when that fails too, because the family quite reasonably objects, we may see these attempts to admit the child to a psychiatric unit against the parents' wishes, for physiotherapy, graded exercise and cognitive behaviour therapy. In effect, by exercising their right to stay within the state education system, these parents find themselves at risk of 'losing' their child to the state. This is clearly wrong, and a huge injustice.
Given that the initial graded school attendance programme didn't work, and has led to a deterioration in the child's health, how could anyone believe it possible that graded exercise in any form would do the trick?

Statements by exercise physiologist Mark Van Ness, whose research clearly demonstrates the reality of post exertional deterioration, and by Dr William Weir, whose thirty years' experience with ME patients reveals the same phenomenon in a clinical setting, both show the recent media coverage up in a very poor light. It has caused huge upset and distress amongst families. They know it can only make things harder for them when they quite reasonably try to help their child pace themselves carefully, and convalesce effectively.
Jane Colby
Former Head Teacher and Executive Director of Tymes Trust

January 2015
Rational understanding of the symptoms of ME/CFS

The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2814%2900069-8/abstract). Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even  by their own studies, and which has been  undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this  devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
W.R.C.Weir FRCP, FRCP (Edin), Consultant Physician, 10 Harley Street, London W1G  9PF

Prof. VanNess on recent press reports
Recent media headlines would have us believe that "fear of exercise" hinders our treatment.  The papers have each taken slightly different but equally damning headlines:
"Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - Study" The Guardian
"Chronic fatigue syndrome sufferers 'can benefit from exercise'" The Independent
"Exercise can help with ME, scientists say" BBC
"Sufferers of chronic fatigue syndrome ‘can benefit from exercise’" The Irish Independent
"Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition" Mail Online
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph
What is written behind the headlines is no better.  Patients were understandably outraged! 
The Newry and Mourne ME Fibromyalgia Support Group
have spent much time and effort trying to ensure that medical professionals understand the real physiological problems that ME patients have with aerobic exercise, and less than a year ago Dr Mark VanNess eloquently explained these problems to a packed house in Stormont, Belfast. (More detail here)
Joan McParland (founder and co-ordinator of the Newry and Mourne Group) therefore wrote to Dr VanNess to ask for his response to the these press reports.
The group are delighted that Professor Mark VanNess has agreed that we can share his response.  We certainly hope it will help clear up any misunderstanding about exercise for ME patients.  His letter is quoted below:
"Dear Joan,
I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.
Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion.
Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.
We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.
Good luck to you and your organization as you help us all accurately portray this illness.
J. Mark VanNess, Ph.D.
Professor; Departments of Health and Exercise Science and Bioengineering
University of the Pacific
Stockton, California, USA"


January 2015
Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015

From the M.E. Association -

The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2014).

My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening.
I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.
On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary.
To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother.
In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.
I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient.
The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.
Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?
The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.
I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.
The debate was answered by the Parliamentary Under Secretary of State for Health, Earl Howe, and the full text can be read HERE.


January 2015
An M.E. Spring ???
By Greg Crowhurst

As another year of agony threatens to grind us into awful nothingness, as I hang dishevelled with bleeding fingertips, digging deep, wrecking my brain, trying to inject, with a breaking heart, a little hope and optimism, I find by accident, a reference by Hooper and Williams, to something I wrote a long time ago :
“In a paper dated 8th March 2008 entitled “The Year of No Compromise” Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following
“This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK”.
….Crowhurst’s summary exactly captures the situation in the UK:

“The recommendations:

  • do not investigate ME patients
  • do not provide special facilities for ME patients other than psychiatric clinics
  • do not offer special training to doctors about the disorder
  • do not offer appropriate medical care for ME patients
  • do not offer respite care for ME patients
  • do not offer State benefits for those with ME do not conduct biomedical research into the disorder

The tactics:

  • the wreaking of havoc in the lives of ME patients and their families by the arrogant pursuit of a psychiatric construct of the disorder.
  • the attempts  to subvert the international classification of this disorder from neurological to behavioural
  • the propagation of  untruths and falsehoods about the disorder
  • the building of affiliations with corporate industry
  • the insidious infiltration  of all the major institutions
  • the denigration of those with ME

The practices: 

  • the attempt to make "ME" disappear in a sea of chronic fatigue
  • the refusal to see or acknowledge the multiplicity of symptoms
  • the ignoring and misinterpretation of the biomedical evidence
  • the suppression of published findings
  • the vested interests      

The impact:

  • the arresting and sectioning of protestors
  • the silencing of ME patients, through being given a psychiatric label
  • the suppression of dissent
  • the labelling of ME patients as the "undeserving sick", as malingerers
  • the forcible removal  of sick children and adults from their homes.

Seven years later things have not changed !
Significantly though last summer Professor Mark Baker,  Director of the Centre for Clinical Practice at NICE,  stated in July 2014 that the current Guideline for “ME/CFS” does not :

  • meet the needs of people with ME - or NICE's needs either.
  • address the real issues in ME
  • promote innovation
  • has had a “disappointing” impact on specialist care and commissioning issues.

..and that  “something” is needed to steer patients away from dangerous neglect and towards expert diagnosis and treatment.
Ref : http://www.forward-me.org.uk/25th%20June%202014.htm
Well, that is progress ! However, as I write in the latest  25% Group Christmas Magazine :
"I turn to the lonely wall and I am thinking to myself, when are the campaign groups going to face-up to the fact that whatever we throw at the Psyches, the NICE’s... , they just absorb with a great big belly laugh. Rant and rave all you like on the internet and they agree with you, with a sly twinkle. Your concerns, your outrage, your petitions they will even sign up to, while slapping you on the back, with a dagger in their hand. "
Even so - as Baker's extraordinary admission last year indicates, we ARE making progress. There IS reason for hope.
But we HAVE to discover a new radicalism !! It has been a long, long road. Many of us are beyond worn-out, it is such a struggle surviving.
Could this year be an ME Spring ? Alone among all the Charities that have sold us out, the 25% Group is taking a stand this year, inviting patients to share their experience of ME, so that "we can wake up the powers that be to the reality of patient experience."
Yes, yes !!! Patient experience is EXACTLY what is required, especially in this Election Year in the UK; exposing the reality of what is happening as opposed to the psychiatric rhetoric is a long overdue. Why has this initiative not happened sooner ??
Please support the 25% Group.
Make THIS the year you say "NO MORE, not for a MINUTE more am I going to put up with this " !!!!
Make this the year you make a formal complaint about your dire lack of treatment !!!
Make this the year you ACT !!

Please, please take a stand this year : on behalf of us all.

December 2014
M.E. and exercise – when will they ever learn?

From the M.E. Association –
M.E. and exercise – when will they ever learn?  editorial in our winter 2014 ‘ME Essential’ magazine

Our chairman, Neil Riley, wrote this in the winter 2014 edition of our membership magazine, ‘ME Essential’.
My sister Kate lives in Australia. In August she came to Europe with her husband for a holiday. Their first port of call was Amsterdam.
I was too ill to meet her so my daughter, Rachel, went and took along her IPad. And so it was that on a cold, wet Saturday morning, Kate and I had a “FaceTime” video linkup as she sat in an Amsterdam coffee house whilst I was on the sofa at home.
I said I was so sorry that I could not make it to Holland to see her but explained that I was too ill with my ME. “Oh” she said, “you need to try that Graded Exercise therapy, it was in the newspaper the other day. It can cure you, you know”.
There was a stunned silence here and a gasp from my daughter Rachel in Amsterdam. What could I say? How do you explain to your sister, whom you imagine after all these years, would know about ME, that such a therapy was much more likely to make me worse than better.
I had to end the” FaceTime” link. I then felt the tears trickling down my face. “How could she”, I thought, doesn’t she know me?
I am not the only ME sufferer whose nearest and dearest have doubted them. It is heart-breaking. Only those who live with us each day or who have taken the trouble to understand what this illness is, can see what our life really is like.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death, yet we are treated as though we just lack the will to exercise and pick up our bed and walk. The lack of recognition of the seriousness of our illness is a blight on the medical profession.
This is a powerful message that we must get across. Not only to our nearest and dearest but to the world at large.

December 2014
Exercise Intolerance Quotes


The whole idea that you can take a disease like this and exercise your way to health is foolishness, it’s insane.”

"Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse.
How to engage in desired or necessary activities in a way that does not lead to a crash thus is an important topic for those with the disease.
Following are more than two dozen comments from experts in M.E. on this topic.
Except where indicated otherwise, the quotes were supplied directly by the named individuals for this collection (in some cases a few years ago).
Some of these quotes refer to the “PACE Study,” which is discussed on this page http://paradigmchange.me/pace of the Paradigm Change site."
Here's a list of those whose comments are given:
To read the quotes, please go to http://paradigmchange.me/exercise-quotes/


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© Hazel Stapleton 2000 - 2015
E-mail: hazel <at> oneagleswings.me.uk