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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!


May 2016
 
PACE Trial: Prof Malcom Hooper’s response to Dr Stuart Spencer of The Lancet

 
http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
 
2nd May 2016
 
Dear Dr Spencer
 
In your acknowledgement of my letter of 15th April 2016 to Dr Richard Horton, you write: “We have received, considered and discussed your letter.  We recognise that scientific findings can be a matter for debate, but disagreement, however intense, is not grounds for retraction of an article”.
 
In the light of the extensive international criticism of the PACE trial, I regard this as an unsatisfactory reply and ask you to reconsider.
 
My letter calling once again for a retraction of the PACE article is not about a “disagreement”: it is a critique alerting editors of The Lancet to basic errors of fact and to misuse of statistics by the PACE PIs.
 
The article you published in The Lancet in 2011 promotes the use of a non-effective intervention. You will recall that one of the PACE PIs, Professor Michael Sharpe, conceded this on 18th April 2011 when he said on air: “What this trial wasn't able to answer is how much better are these treatments than really not having very much treatment at all”.
 
There can be no doubt that the PACE trial did not fulfil its objective, which was to demonstrate the effectiveness of CBT/GET in “curing” ME, and that (as confirmed on 26th March 2016 by Rebecca Goldin, Director of STATS.org and Professor of Mathematical Sciences at George Mason University in Fairfax, Virginia): “flaws in this design were enough to doom its results from the start” (http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/).
 
The many flaws were pointed out to you in my formal complaint of 28th March 2011: some of these were that the entry requirements and the primary outcome thresholds were changed after the trial had begun; it failed to report on its primary outcome measures as set out in the protocol; PIs relied upon the subjective reports of participants because the use of actometers was dropped and the few remaining objective measures of function failed to demonstrate any benefit from the PIs’ favoured interventions; there was an absence of blinding; it was not, as advertised, a randomised controlled trial -- there was no control group, and participants were not made aware of the conflicting interests of the investigators; astonishingly, it was possible for a participant to leave the trial with a lower physical function score and a higher fatigue score than their entry score, but still be classed as “recovered”.
 
That is a travesty of science, a tragedy for patients and is tantamount to fraud.
 
The accompanying Comment by Bleijenberg and Knoop (approved before publication by the Chief PI Professor Peter White) erroneously claimed a 30% recovery rate but, even though one of your senior editors promised it would be removed, the error remains uncorrected.
 
For the last five years the PACE study has been totally discredited by the international community of scientists: for the selective results you published to remain in the literature to be quoted uncritically by others continues to risk more iatrogenic harm.
 
 
To read the rest of the letter, please go to –
 
http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
 



May 2016
 
Chasing Competent Care Conference

 
https://www.facebook.com/events/792934424169908/
 
Monday 6th June at the Stormont Hotel, Belfast, BT4 3LP
 
6pm registration for 6.30pm start
 
Admission £6 at door (if funding is secured then it will be FREE)
 
Hope 4 ME & Fibro Northern Ireland are organizing this conference "Chasing Competent Care" as part of a campaign to improve medical care for thousands of ME and fibromyalgia patients in Northern Ireland.
 
Speakers:
 
Professor Mady Hornig, from Columbia University USA -The search for biomarkers in ME/CFS: accelerating diagnosis, predicting treatment response
 
Dr Joe McVeigh, Researcher at University of Ulster - The Exercise Dilemma with Fibromyalgia
 
Natalie Boulton, A Parent’s Perspective: ‘Lost Voices’ as the years pass.
 
Dr Pamela Bell, Pain Alliance - The Problem with Pain
 
Professor Malcolm Hooper - A Review of the PACE Trial
 
Louise Skelly, Patient & Client Council - Amplifying the Voice of the Patient
 



April 2016
 
Jane Colby at the Named Person Supreme Court Appeal Hearing
 
JANE COLBY: SUPREME COURT APPEAL HEARING, NAMED PERSON, 2016

 
http://no2np.org/jane-colby-supreme-court-appeal-hearing-named-person-2016/
 
The Chair of Trustees and Executive Director Jane Colby of Tymes Trust attended the Supreme Court Appeal hearing in Westminster, 8-9 March 2016
 
I wanted to speak. I hadn’t anticipated that. I wanted to speak out, but as you know, it wasn’t that kind of hearing. And yet, an unexpected moment arrived when I really wanted to give evidence. Impossible of course. This was an Appeal to the Supreme Court, a war where the weapons are points of law, wielded by lawyers, before five Supreme Court Judges with minds (as was said of Miss Marple) like a bacon slicer.
 
It was forensic, a relentless examination of legal arguments put forward by QCs, on the one side for the Appellants (against the Named Person/state guardian Law) and on the other, representing the Scottish Government (determined to impose it). And the arguments piled up, one on another, by little and little, till they made a great mountain.
 
The compulsory Named Person state guardian scheme. What it was, how it came to be what it was, and why it was illegal.
 
Why it was not illegal.
 
Why it was “mission creep”, a “service” morphed out of all recognition into a monstrous Jabberwock, gobbling up family rights and shredding their liberty to raise children in freedom.
 
Why it was not. And why sharing data without permission, without telling parents, was quite permissable.
 
Why it was not.
 
And that was where I wanted to speak. Data sharing? Information sharing? What data? What information?
 
“So often,” I wanted to say, “it’s not data and it’s not information. Not in the true sense of those words and all that they imply. Through being recorded, through being written, through being shared and passed on, it becomes data, it mutates into facts, irrefutable, immutable information about a family, any family. Your family.
 
“And how did some of this data start out?” I wanted to ask. And I wanted to answer: “As a rumour. Nothing more than over the fence, back of the cab, tittle tattle. Eventually, no-one remembers the fence. Or the chat between neighbours. Or the cab, or the gossip the driver overheard. What do they remember? They remember the documents.”
 
The Supreme Court building is in every sense, awesome. A Gothic beauty designed, ironically, by a Scot, transformed inside into a glass and leather palace. Each nation of the United Kingdom is symbolised in national emblems formed in illuminated glass and coloured like jewels. Hanging high above us, high above the judges.
 
“All rise.”
 
Why would we not? This was an occasion of wonder, demanding of full respect and a supreme test of these lawyers’ skills, but it was also a battle for freedom.
 
This is why Tymes Trust – The Young ME Sufferers Trust – agreed to join this genuine modern day struggle.
 
Jane Colby, Tymes Trust Executive Director
 
www.tymestrust.org @tymestrust www.facebook.com/tymestrust
 



April 2016
 
The PACE Trial did not go unchallenged for five years, and the MMR


The PACE Trial did not go unchallenged for five years
 
Margaret Williams           28th March 2016

 
On 21st March 2016 Rebecca Goldin, Director of STATS.org and Professor of Mathematical Sciences at George Mason University in Fairfax, Virginia, published her devastating critique of the PACE trial, asking in bewilderment: “How did the study go unchallenged for five years?” ( http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/ ); others have been asking the same question.
 
However, the iatrogenic disaster that is the PACE trial did not go unchallenged for five years.
 
It is important that there should be an accurate record of the many challenges which were submitted by numerous people, including Professor Malcolm Hooper, but which were either ignored, dismissed, publicly ridiculed, denied outright or denigrated, for example, as in Nigel Hawkes’ feature article in the British Medical Journal: “Dangers of research into chronic fatigue syndrome -- Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition” (BMJ 2011;342:d3780 doi: 10.1136/bmj.d3780 Page 1).
 
Hawkes wrote that publication of the PACE results prompted a: “response to the Medical Research Council (MRC), which part funded the trial, and a shorter 43 page rebuttal to the Lancet. Both were written by Malcolm Hooper, emeritus professor of medicinal chemistry at the University of Sunderland, who branded the trial “unethical and unscientific.”  He wrote: “Entry criteria were used that have no credibility; definitions and outcome measures were changed repeatedly; data appears to have been manipulated, obfuscated, or not presented at all (so it cannot be checked) and the authors interpretation of their published data as ‘moderate’ success is unsustainable.” Both the MRC and the Lancet have considered the submission and rejected it, the Lancet commenting that the volume of critical letters it received about the PACE trial smacked of an active campaign to discredit the research.
 
It is a relentless, vicious, vile campaign designed to hurt and intimidate’, Professor Wessely says….’These people are sulphurous, vicious, horrible’.
 
“Professor Wessely is not alone. All of those who approach CFS/ME from a psychiatric perspective are the targets of critics who believe the disease has a physical cause that would have been discovered by now if the debate, and the research money, had not been cornered by what they see as a conspiracy of psychiatrists, characterised by them as ‘the Wessely school’.
 
“As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. ‘I now go to Iraq and Afghanistan, where I feel a lot safer’, he says”.
 
Such public disparagement is characteristic of how genuine and legitimate complaints about the PACE trial have been treated. All challenges from within the UK were simply buried without trace, even by Ministers of State.
 
Indeed, on 6th February 2013 there was a “debate” on the PACE trial in the House of Lords for which, on his own admission, Professor Peter White (Chief Principal Investigator of the trial) briefed all those who spoke in support of it, with the intended result that the study was enshrined in Hansard as an officially-recorded success story.
 
It was not until David Tuller from America took up the cause that the whole matter was subjected to world-wide scrutiny by academics, medical scientists and statisticians whose views could not be dismissed or silenced.
 
It is worth noting that currently there are calls for the involvement of UK’s Royal Statistical Society: the RSS has already been involved but was conflicted, so declined to assist (see below).
 
To read the rest of the article, go to –
 
http://www.meactionuk.org.uk/The-PACE-Trial-did-not-go-unchallenged.htm


Changing the subject, the following is worth reading –

Former science chief: 'MMR fears coming true'

http://www.dailymail.co.uk/health/article-376203/Former-science-chief-MMR-fears-coming-true.html#ixzz44TCqdSTm 
 



March 2016
 
11th Invest in ME International ME Conference 2016

 
http://www.investinme.eu/IIMEC11.shtml
 
Welcome to London for the IIMEC11 International ME Conference for 2016.
 
Invest in ME Research 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.
 
IIMEC11 is the eleventh annual CPD-accredited biomedical research conference organised and hosted by the charity and now attracts presenters, researchers, physicians, patient groups and journalists 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.
 
Below one will find a description of the conference, how to register, the venue and details of the presenters.
 
Research into Myalgic Encephalomyelitis has 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.
 
The IIMEC11 conference will show some of the major initiatives and research taking place to set up a collaborative strategy for biomedical research into ME to make progress in understanding and treating this complex but exciting area of research.
 
Download the conference leaflet - click here.
 



March 2016
 
OMEGA! Dr Sarah Myhill will be at the Oxfordshire group’s AGM on Saturday, 5 March 2016

 
http://www.meassociation.org.uk/2016/02/omega-dr-sarah-myhill-will-be-at-the-oxfordshire-groups-agm-on-saturday-5-march-2016/
 
Private M.E. medical practitioner Dr Sarah Myhill will be the guest speaker at the OMEGA Annual General Meeting in Oxford on Saturday, March 5.
 
OMEGA – otherwise known as there Oxfordshire M.E. Group for Action – have invited Dr Myhill, from Knighton in Powys close to the Welsh borders, to speak on the diagnosis and management of ME/CFS at their meeting in the Oxford Spires Four Pillars Hotel, Abingdon Road, Oxford OX1 4PS.
 
The meeting in the hotel’s ground-floor Cranmer Room will be held between 2 and 4pm.
 
There will be a break for refreshment and a chance to ask the speaker questions.
 
There are plenty of parking spaces, and there are bus stops near to the hotel and it is a five minute taxi ride from the train station. (The bus stops are New Hinksey, Lake Street).
 
The hotel is about 1.5 miles south of Oxford on the Abingdon Road A4144 – about one mile from the ring road at the Kennington roundabout.
 
If you intend to be there, please email enquire.omega@gmail.com or phone 01491 838 727.
 



February 2016
 
New documentary shines light onto CDC's cover-up of links between vaccines and autism

 
http://www.naturalnews.com/052910_MMR_vaccine_autism_documentary.html
 
(NaturalNews) In 1971, the MMR vaccine against measles, mumps and rubella was licensed in the United States. Since then, it has been marketed in more than 60 countries around the world under various names such as M-M-R II, Priorix, Tresivac and Trimovax. As recommended by its developers, the first dose of the vaccine is administered to children around age one, while the second dose is administered between ages four and five.
 
Doubts about the MMR vaccine first became public in 1998, due to a paper published by the world-renowned gastrointestinal surgeon and researcher Andrew Wakefield. In his research, Dr. Wakefield observed that there is a link between the MMR vaccine and gastrointestinal conditions related to autism. He did not recommend that parents should reject the vaccine, but rather that a single vaccine rather than a combo should be implemented.
 
Now, a new documentary from critically acclaimed journalist Ben Swann exposes the CDC's dirty secrets for the whole world to see. Click here to watch the revealing video, "CDC, Vaccines & Autism."
 
Dr. William Thompson and the 2004 CDC study
 
In 2010, Dr. Wakefield's research was found "dishonest" by the UK's General Medical Council. His career was ruined and his name discredited, as the Council barred him and the co-author of the study from practicing medicine. Although he issued challenges to his accusers to debate him in the media, he was of course ignored. Until now.
 
On August 27, 2014, Dr. William Thompson, who was and remains a scientist at the CDC, hired a whistleblower attorney to make a major statement about the 2004 CDC studyregarding vaccines and autism. As expected, the mainstream media paid little attention to the claim.
 
Nevertheless, after being secretly recorded by a Dr. Brian Hooker, Dr. Thompson declaredthat he regrets omitting "statistically significant information" in the 2004 article published by the journal Pediatrics. He continued by adding that this data suggested an "increased risk for autism" in African American males who received the vaccine before the age of three. As it was later discovered in the official documents that Dr. Thompson handed over to Congress, evidence about the link between the MMR vaccine and autism was not only omitted but also destroyed by the participating scientists.
 
When journalist Ben Swann finally managed to get a hold of these documents from congressman Bill Posey, he was joined by other journalists, doctors and CDC specialists in creating a comprehensive documentary on Dr. Thompson's claim, which you can watch here.
 
The CDC response and interpretation of the study
 
According to the official statement published by the CDC in response to Dr. Thompson's claims, the 2004 CDC study revealed that vaccination between 24 and 36 months of age was slightly more common among children with autism. This association was most relevant among children aged three to five. However, the authors of the report claimed it was not evidence of a link between the MMR vaccine and a higher risk of autism.
 
Instead, they assumed that the statistics reflected "immunization requirements for preschool special education program attendance in children with autism." In other words, the CDC claimed that an increased rate of autism among children who received the MMR vaccine before age three was not a case of vaccine injury. According to them, the statistics just appeared this way because children with autism were more likely to be vaccinated before entering a special education program.
 
Doubt persists among protesters in Atlanta
 
All of a sudden, it seems that the career of Dr. Andrew Wakefield was buried into the ground for no other reason than scientific curiosity and honesty, as new evidence suggests that he might have had serious reasons for concern regarding the MMR vaccine. Is the CDC, the media or the public going to apologize? No. On the contrary, more studies claiming the absolute safety of vaccines will flourish to cover up previous leaks.
 
On October 23, 2015, more than 100 protesters gathered in front of the CDC headquarters in Atlanta to demand answers about vaccines. But with all these controversies covered up by the CDC in the past, how much honesty can the people really expect?
 



February 2016
 
The Scandal Of The £5M PACE Trial For ME: What Can Be Done?

 
https://bammag.wordpress.com/2016/01/21/the-scandal-of-the-5m-pace-trial-for-me-what-can-be-done/
 
'The PACE study is claimed to have negative impact on the way patients are perceived by society'
 
Over 11,000 ME/CFS patients have signed a petition calling for an independent review of the PACE Trial.
 
The PACE Trial is a £5 million study promoting the view that ME/CFS patients can recover if they increase their physical activity, claiming that “fear of activity” has fierce negative impact on patients. However, there’s plenty of evidence suggesting otherwise.
 
Dr Ronald Davis of Stanford University said: “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 that I don’t understand how it got through any kind of peer review.”
 
Even worse, the PACE study is claimed to have negative impact on the way patients are perceived by society and treated in medical practice.
 
Jo-Anne Dobson MLA is set to join Hope 4 Me & Fibro Northern Ireland in an event titled: The Scandal Of The £5M PACE Trial For ME: What Can Be Done? This exciting presentation, delivered by James C. Coyne PhD, will discuss opposition towards the trial and involve a question and answer session.
 
James C. Coyne is a professor of psychology at the University of Pennsylvania whose main principle of research has been the coping process in cancer patients and the testing of interventions aimed at affecting these individuals’ wellbeing. He is known for delivering lively lectures that combine science with insight and tenacity.
 
James has previously criticised positive psychology research that claims a correlation between positive thinking and the progression of cancer and advocates good science and ethical conduct towards patients.
 
He described himself as: “Irreverent socially concious Clinical Health Psychologist sceptical about hype and hokum in science and medicine and their media representations.”
 
James and Hope 4 ME & Fibro Northern Ireland are hoping to advocate the importance of science and scientific accuracy when it comes to patient care at this moving and enlightening event.
 
The professional event is taking place at Stormont Buildings Room 115 on Tuesday 9 February 2016 at 6:30pm.
 
The open event is taking place at Belfast Castle on Saturday 7 February 2016 3 – 5pm
 
To book email: hope4mefibro@outlook.com

 



January 2016
 
Medically Explained Assumptions

 
http://spoonseeker.com/2016/01/04/medically-unexplained-assumptions/
 
Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—–  who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and subjected to psychological therapy,  which won’t have done very much to cure his concussion.
 
Charcot did not invent the concept of ‘hysteria’ but his interest popularized its use and over the years it was applied to epilepsy, multiple sclerosis, Parkinsons disease, cerebral tumours, and a great many other conditions which were not at the time recognized as the physical problems they were later acknowledged to be.
 
The diagnosis ‘hysteria’ is not in use today but the medical profession’s habit of labeling any patient with symptoms that don’t fit the pattern of a currently recognized pathology as ‘psychologically ill’ remains as prevalent as ever. These days, they use terms like ‘somatization’, ‘conversion disorder’, and ‘medically unexplained symptoms’ but the concept remains the same. Any set of symptoms which aren’t in the medical textbooks is assumed to be ‘all in the head’.
 
In the 21st century there is really no excuse for this. A quick glance back through history will reveal that time after time this practice has led to misdiagnosis, as medical science has gradually identified more and more genuine physical conditions which were previously dismissed as ‘psychological’. Yesterday’s ‘hysteria’ is today’s epilepsy, today’s MS…
 
Ironically, while the physical conditions are required to meet precise and stringent criteria for diagnosis, the psychological labels seem to be largely defined by exclusion. ‘If you don’t meet the physical criteria,’ you are told, ‘you must have this other condition we’ve dreamed up…’ No further evidence seems to be needed. The health professional’s opinion is all powerful.
 
As far as I can deduce, there is no proof that conditions such as somatization actually exist, any more than hysteria did, but even if they may sometimes have some validity, the practice of allocating them to patients by default, just because medical science has not yet defined a specific template for their symptoms, is clearly mistaken.
 
So why does it continue?
 
I can only assume it is because it is convenient for the medical profession. Doctors are able to refer patients on for psychological therapy instead of having to admit that the patient’s problem is outside their knowledge, and at the same time it brings in extra work for psychiatrists and psychologists. So everybody wins – except for the misdiagnosed patients of course.
 
In this environment, is it really surprising that people with ME (myalgic encephalomyelitis) are so often misdiagnosed as having a psychological condition? It’s only the same thing the doctors have been doing for years: assuming that the state of medical knowledge is so advanced that anything not in the textbooks can’t be physically real and must be down to some sort of aberrant thinking on the part of the patient. When you look at it from this perspective, you could argue that the doctors aren’t really picking on people with ME after all. This is just what they do with conditions they don’t understand. They’re done it for hundreds of years. It’s nothing personal to us…
 
I’m sure doctors think they’re helping their patients by referring them on for psychological therapies – and in some cases they are, of course. Such therapies can be helpful, even where a physical condition exists. CBT (cognitive behavioural therapy) can be of assistance in ME, for instance, if it’s used to address obstacles to pacing such as guilt and ‘people pleasing’. But where it is used – as it predominantly is – hand in glove with GET (graded exercise therapy) to convince the patient there is nothing physically wrong with them and all they have to do to get better is to ignore their symptoms and push themselves regardless, then it can lead to a serious and long term deterioration in the condition, as evidenced by the recent ME Association patient survey.
 
One of the frequently repeated misapprehensions about people with ME is that we object to a psychological diagnosis because of the stigma it brings. This was most recently voiced by the former BMJ editor Richard Smith (in an otherwise helpful piece which called on the PACE Trial researchers to release their data). He wrote:
 
“The emotion stems from sufferers from the condition (ME) resenting greatly the idea that it may have psychological causes with the stigma that implies. The resentment seems to be that psychological problems are not seen “real” in the way that physical ones are and that they may result from “moral weakness” rather than a morally neutral virus.”
 
Goodness knows where Richard Smith got these weird ideas but they’re not something I’ve ever heard from people with ME. The main reason we object to a psychological diagnosis is straightforward enough: because it isn’t accurate. There is now substantial evidence that ME is (as the recent IOM Report describes it) a ‘serious chronic complex systemic disease’ with a growing body of biomedical research studies to support this view. A handy A4 sheet with details of ten such important findings was recently produced by Prof Anthony Komaroff, and the IOM Pathways to Prevention Report makes clear: ‘this is not a primary psychological disease in etiology’.
 
Furthermore, the psychological misinterpretation of the condition leads to inappropriate therapies which, as mentioned above, can have seriously damaging consequences for patients; it diverts interest and investment away from the biomedical research which is desperately needed; and it provides ammunition for misinformed media coverage like the Telegraph article we saw a few weeks ago, which can seriously damage relationships between people with ME and their friends & family and society in general.
 
These are the reasons why we want our condition to be recognized for what it is. It has nothing to do with the potential stigma of psychiatric illness. We have no reason to fear such stigma, as the truth is that we already have more than enough of our own. Sir Simon Wessely quite rightly speaks out against the stigma of mental illness, pointing out that such conditions are as ‘real’ and unpleasant as physical ones, but the truth is that this stigmatization seems to be just as prevalent among the medical profession as it is in society at large, and the medics who buy into it seem to reserve special disdain for those they perceive to be mentally ill yet who refuse to accept their diagnosis. It is true that if you’re mentally ill, you tend to be at a disadvantage in dealing with doctors. But if you don’t accept this label and – worse still – don’t respond well to the treatments they give you, then you’re really in trouble.
 
Welcome to life with ME.
 
Never mind that there is substantial evidence of biophysical abnormalities and none of an underlying psychological cause, the psychosocial model of ME so beloved of mainstream medicine, especially here in the UK, requires us to forget all that and believe we’re not physically ill – or else risk being seen as a difficult patient. We are asked to believe that the day to day reality of our illness is other than what it is.
 
In her excellent recent blog post, ‘The Politics of Stigma with ME/CFS’, Catherine Hale quotes the Buddhist author and ME patient Toni Bernhard on this subject: “we have been branded not credible witnesses to our own condition”. Catherine goes on to suggest that ME has been represented as ‘an illness of misperception of reality’.
 
Yet whose misperception of reality is really the problem here?
 
We patients with ME are sometimes described as having ‘medically unexplained symptoms’, yet what exactly is ‘unexplained’?
 
We don’t yet understand the exact mechanism by which our symptoms are produced but if, as the evidence suggests, we have a neuro-immune multi-systemic condition, that is surely explanation enough for why we are suffering.
 
What is less easy to explain are the many misperceptions of the medical profession:

  • why any set of symptoms not in the medical textbooks is automatically assumed to be ‘psychological’, even though history shows this has consistently proved to be a mistake
  • why people with ME are assumed not to be physically ill when there is plenty of credible evidence to show that we are
  • why we are treated with therapies such as CBT and GET for which there is little evidence of efficacy and which patient experience suggests can be very damaging
  • why PACE, the largest study in support of these therapies, is assumed to be ‘excellent research’ in spite of innumerable fatal flaws 

It seems to me we are the victims not of ‘medically unexplained symptoms’ but of ‘medically unexplained assumptions’.
 
It is not us, people with ME, who are making these assumptions. But day after day, year after year, we have had to suffer their consequences.
 
Now, as a new year dawns, perhaps the medical profession will finally start to open its eyes to reality.
 
2015 brought many encouraging developments:

  • The US IOM and P2P Reports have reported on the true nature of our condition
  • New research funding has been announced by the US National Institutes of Health
  • Prominent researchers such as Ian Lipkin and Ron Davis have spoken of a new urgency to ‘solve the puzzle’ of ME
  • Even here in the UK, thanks to David Tuller, James Coyne and the work of the many patients and professionals who have chipped away to expose the flaws of the study over many years, pressure is growing on the PACE trial researchers to surrender their data. 

Let’s hope that 2016 brings us closer to the day when the mists finally part to reveal the truth, and the mistaken assumptions of decades (and centuries) past are consigned to history.
 
While the clocks tick by on our lives, we wait to see…
 



January 2016
 
Happy New Year and My Blog Top 10 2015
 
A Very Happy New Year to readers of my website, your families and friends.
 
C H Spurgeon’s morning devotional for 1st January –

 
https://www.biblegateway.com/devotionals/morning-and-evening/2016/01/01
 
"They did eat of the fruit of the land of Canaan that year."
 
Joshua 5:12

 
Israel's weary wanderings were all over, and the promised rest was attained. No more moving tents, fiery serpents, fierce Amalekites, and howling wildernesses: they came to the land which flowed with milk and honey, and they ate the old corn of the land. Perhaps this year, beloved Christian reader, this may be thy case or mine. Joyful is the prospect, and if faith be in active exercise, it will yield unalloyed delight. To be with Jesus in the rest which remaineth for the people of God, is a cheering hope indeed, and to expect this glory so soon is a double bliss. Unbelief shudders at the Jordan which still rolls between us and the goodly land, but let us rest assured that we have already experienced more ills than death at its worst can cause us. Let us banish every fearful thought, and rejoice with exceeding great joy, in the prospect that this year we shall begin to be "forever with the Lord."
 
A part of the host will this year tarry on earth, to do service for their Lord. If this should fall to our lot, there is no reason why the New Year's text should not still be true. "We who have believed do enter into rest." The Holy Spirit is the earnest of our inheritance; he gives us "glory begun below." In heaven they are secure, and so are we preserved in Christ Jesus; there they triumph over their enemies, and we have victories too. Celestial spirits enjoy communion with their Lord, and this is not denied to us; they rest in his love, and we have perfect peace in him: they hymn his praise, and it is our privilege to bless him too. We will this year gather celestial fruits on earthly ground, where faith and hope have made the desert like the garden of the Lord. Man did eat angels' food of old, and why not now? O for grace to feed on Jesus, and so to eat of the fruit of the land of Canaan this year!
 
 
My Blog Top 10 2015

 
The Top 10 most popular items of all the things I posted on my blog during 2015 were as follows –
 
 Dr. Andrew Wakefield Speaks Out on CDC Vaccine Science
http://oneagleswingsme.blogspot.com/2015/08/dr-andrew-wakefield-speaks-out-on-cdc.html
 
 
Through Gates of Splendour - Elisabeth Elliot (1926-2015)
http://oneagleswingsme.blogspot.co.uk/2015/06/through-gates-of-splendour-elisabeth.html
 
 
What Various Hindrances We Meet – Rev John Thackway
http://oneagleswingsme.blogspot.co.uk/2015/07/what-various-hindrances-we-meet.html
 
 
An M.E. Spring ??? – Greg Crowhurst
http://oneagleswingsme.blogspot.co.uk/2015/01/an-me-spring.html
 
              
Rational understanding of the symptoms of ME/CFS – Dr William Wier
http://oneagleswingsme.blogspot.co.uk/2015/01/rational-understanding-of-symptoms-of.html
 
 
Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions
http://oneagleswingsme.blogspot.co.uk/2015/01/countess-of-mar-tells-house-of-lords.html
 
 
Treating Thyroid patients like children – Dr Malcolm Kendrick
http://oneagleswingsme.blogspot.co.uk/2015/05/treating-thyroid-patients-like-children.html
 
 
PACE Trial Key Dates and Chronology of Complaint – Prof Malcolm Hooper
http://oneagleswingsme.blogspot.co.uk/2015/11/pace-trial-key-dates-and-chronology-of.html
 
 
Further responses to the article in The Telegraph about the PACE Trial
http://oneagleswingsme.blogspot.co.uk/2015/11/further-responses-to-article-in.html
 
 
October Holiday – Tim and Lois’s travels, including Italy and Israel
http://oneagleswingsme.blogspot.co.uk/2015/10/october-holiday.html
 



December 2015
 
It’s time for doctors to apologise to their ME patients

 
http://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html
 
For too long the medical community has dismissed 'Chronic Fatigue Syndrome' as a mental illness which can be cured with therapy and exercise
 
By Dr Charles Shepherd
9:35AM GMT 07 Dec 2015
 
Back in 1955, a mysterious polio-like illness affected 262 doctors and nurses at London’s Royal Free Hospital. The hospital had to close for just over three months.
 
The outbreak was written up in The Lancet and a new neurological disease entered medical language: myalgic encephalomyelitis, or ME, as it still remains in the WHO Classification of Diseases. "Myalgic" referred to the muscle symptoms; "encephalomyelitis" referred to the various neurological symptoms.
 
Others were not convinced that ME was a neurological disease, and two decades later two psychiatrists, without interviewing any of the patients, wrote a paper for the British Medical Journal where they concluded that the Royal Free outbreak was due to mass hysteria.
 
The mud from the BMJ stuck. Like most doctors at the time, I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong.
 
Ignored or dismissed by doctors, people with ME went undiagnosed or misdiagnosed for long periods of time, often combined with harmful management advice – as is still the case. I can confirm this after developing classic ME following chickenpox, caught from one of my hospital patients. Some developed severe ME, becoming housebound or bed-bound with no medical help. Some never recovered.
 
During the 1980s, ME was redefined and given a dreadful new name: chronic fatigue syndrome (CFS). The term CFS trivialised a serious medical condition – the equivalent of trivialising dementia by calling it a chronic forgetfulness syndrome – and shifted the focus from a "disease" to a single symptom, "chronic fatigue".
 
CFS also brought in a much wider group of people suffering from chronic undiagnosed fatigue. A powerful body of psychiatric opinion convinced the medical profession that CFS was basically a mental health problem whereby people became trapped in a vicious circle of abnormal illness beliefs and behaviours, inactivity and deconditioning. In other words, there was no "disease" present.
 
The CFS model of causation resulted in two controversial forms of behavioural management – cognitive behaviour therapy (CBT) and graded exercise therapy (GET) – being recommended by NICE as the main form of treatment.
 
Now we have the PACE trial – the largest and most recent assessment of CBT and GET, which has cost the taxpayer almost £5 million. At long term follow-up, and contrary to what was reported in the press, the PACE trial found no significant difference between CBT, GET, adaptive pacing and specialised medical care.
 
Public reaction to the spin that has been put on the PACE trial results for CBT and GET has resulted in over 10,000 people signing a petition calling for claims relating to so-called recovery to be retracted and six academic researchers calling for an independent review of the study.
 
By contrast, in evidence collected from 1,428 people with ME by the ME Association, for which I am medical adviser, 73 per cent reported that CBT had no effect on symptoms while 74 per cent said reported that GET had made their condition worse. The MEA has therefore recommended that NICE withdraws their advice relating to GET.
 
On the progressive side of this medical divide are physicians and researchers who, like the patient community, believe that ME is a serious multi-system disease, often triggered by infection, but maintained by abnormalities involving, neurology, muscle, and the immune system.
 
In the UK, a research collaborative with a strong emphasis on the biomedical research has been established. And a major report from the prestigious US Institute of Medicine has recently concluded that ME is a "serious, chronic, complex, systemic disease that can profoundly affect the lives of patients". ME is not a psychological problem.
 
Biomedical research into ME is revealing abnormalities in the way that muscle creates energy, along with evidence of an ongoing overactive immune system response. New types of brain imaging are demonstrating low-level inflammation in several specific parts of the brain.
 
At the same time, a large multi-centre clinical trial is taking place to assess the use of Rituximab – a drug that depletes immune system B cells and which is normally used to treat a form of cancer called lymphoma.
 
The argument here is not with mental illness, which is just as real and horrible as physical illness. As with any long-term illness, some people will develop mental health problems where talking therapies can clearly be of help.
 
The argument is with a simplistic and seriously flawed model of causation that patients know is wrong and which has seriously delayed progress in understanding the underlying cause of ME and developing effective forms of treatment.
 
Opening the 2015 research collaborative section of neuropathology, Jose Montoya, professor of medicine at the University of Stanford, said: “I have a wish and a dream that medical and scientific societies will apologise to their ME patients.
 
I agree – the time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years. Doctors need to start listening to their patients and there must now be increased investment in biomedical research to gain a better understanding of the disease process and to develop treatments that these patients desperately need.
 
Dr Charles Shepherd is medical adviser to the ME Association
 



December 2015
 
Huddersfield woman Nathalie Wright talks about the misery of living with ME

 
http://www.examiner.co.uk/lifestyle/huddersfield-woman-nathalie-wright-talks-10496026
 
In this thought provoking first person feature Huddersfield 22-year-old Nathalie Wright reveals how her life has been devastated by the crippling illness ME. Nathalie grew up in Pole Moor above Slaithwaite, went to Wilberlee Primary School, Crossley Heath School in Halifax and then Greenhead College. Day and night became indistinguishable
 
I lost my life as I knew it on November 1, 2013.
 
For many ME sufferers there is a date etched onto their deepest memory, the traumatic day they became ill with an often life-long disease. At my worst I suffered months of being completely bed-bound and was too weak to even clean up my own sick from the floor beside me. I only had the strength to shower every few weeks (sitting down.) I was 22.
 
Day and night were indistinguishable because most of the time I was not fully conscious in the way a healthy person is. I could simply pass out at any point.
 
When the crushing fog around my brain cleared even a little it only allowed me to be more aware of the relentless pain in my thighs and chest accompanied by a constant vice-like grip on my skull. A myriad of other symptoms danced round my body to a rhythm I couldn’t understand. Take away from this piece one fact about ME – it severely limits the patient’s capacity to function as a human being. I was reduced to a body on a bed in the prime of my life (yet in the grand scheme of ME suffering, I consider myself to have got off relatively lightly.)
 
My ME story began, as is very common, with a fever. I was a final year student studying English at Oxford University and was happy and fulfilled, looking forward to the future. When the fever hit I was working on some coursework and so asked for an extension as I just did not seem to be getting better. My request was denied.
 
The subsequent weeks were a blurred mix of confusion and helplessness as I felt myself slip further and further into the nadir of the disease. Why couldn’t I move? Why couldn’t I eat? Why could no doctors help me? You may think that with such a serious disease I would have been offered extensive medical support, but the opposite was true. Several GPs brushed me aside as being ‘a little stressed.’ When I asked another how long I could expect to be so severely ill she simply replied: “How long’s a piece of string?” Not only was I condemned to this tortuous illness, but my sentence was indefinite. I was forced to suspend my studies.
 
Months later when I finally got a referral to hospital (all the while languishing in a house I shared with strangers where I could barely cope to look after myself at all), I was finally officially diagnosed. “You’ll be back up and running in no time” grinned the specialist. I wanted badly to believe him but his words did not reflect reality.
 
As so often happens with poorly understood illnesses, attempts were made to psychologise my ME. I reluctantly saw a hospital psychologist who seemed determined to find a cause in my immediate environment. After 40 minutes of desperate floundering it seemed he’d hit the jackpot.
 
“Where did you go to school?” he asked. I told him, Huddersfield. Nodding sagely and narrowing his eyes he asked: “Are you having a hard time with the posh boys at Oxford?”
 
That was all the NHS had to offer me.
 
The relentless avalanche of ME symptoms completely took away my life and such a profoundly disturbing change in physical health is enough to drive anyone to despair.
 
I remember thinking, often, ‘I both feel like I’m dying and want to die so that I can stop feeling like I’m dying.’
 
Yet I think the worst consequence of such a disease is the sheer loneliness of it. I saved and treasured my scarce grains of energy to be able to have human interaction, often spending more energy on masking my symptoms and trying to appear as well as possible – I was so ashamed of my ME.
 
It seemed impossible to make friends and family understand exactly what was happening. Common responses included: “You’re just depressed” or even “this is just an ‘illness behaviour’ and not a real disease.”
 
However, often complete silence is the most hurtful response. As is common when a young women is in any kind of distress I felt I was dismissed and disbelieved while at the same time I was also blamed for it. It must have been that I was working too hard; it must have been that I only did four hours of exercise a week instead of six; it must have been that I was doing too much exercise. This added up to me eventually doubting every aspect of my being and sense of self – something I’m still trying to recover from.
 
Oxford University is often a terrible place to be sick. Determined to finish my degree I struggled on a year later under what is an enormous workload for anyone. As is usually the case at Oxford, even though I had suspended purely on medical grounds I was asked to sit nine hours of exams (including my extra time) to be ‘allowed’ back on my course. My protestations that that would make me extremely ill were all but ignored, although I managed to battle my way to just one penal exam with my tutor’s admonishment to ‘toughen up’ ringing in my ears.
 
I want to end this piece by saying that my ME is currently extremely life limiting, but nevertheless, I have improved a lot and am much better than thousands of severe sufferers around the world who literally can’t speak and are often ignored even when they break their backs to utter a cry of pain.
 
There are in-person ME support groups but it is a recurring joke in my head that people with ME are always too ill to attend them anyway – sometimes black humour gets you through a bad day. I stumbled across one such voice online which is where the ME community thrives and is an incredibly supportive environment. This voice was so ill and in such pain that it was simply asking others how best it could kill itself.
 
ME was my gateway to the world of the sick and often the barrier between the two worlds seems unsurmountable. How can you verbalise your body? How can the healthy understand sensations that no body should feel? This is why, when sick people speak it is of utmost importance that we are listened to, and listened to without judgement.
 
For ME, more biomedical research is needed urgently. In the meantime, the skills of listening and empathy are free.
 
I, along with millions of other sufferers around the world, want help and we want answers. Oxford University recently published follow-up data to its 2011 trial undertaken in partnership with Queen Mary and Kings College universities. The trial aimed to prove that the best treatment for ME (which they call ‘CFS/ME’) is cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
 
However, the trial, known as the PACE trial, has been highly criticised internationally and in the UK. Dr Ronald Davis of Stanford University commented: “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.”
 
Indeed, according to the trial’s definitions, ME patients were deemed ‘recovered’ even if they had physical function similar to someone with congestive heart failure. For me, the impact of such misleading claims not only increase the stigma I experience but is actively dangerous. GET was found to make over 70% of patients worse, according to a study conducted by the ME association.
 
The reason why this is so makes complete sense to any ME sufferer. The defining feature of ME is something called PEM or post exertional malaise (if one thing, ME has honed my acronym skills). This means if I exert myself physically or even mentally I will experience a worsening of all my symptoms, possibly for days or even weeks. If I walk too far at once (say 100m rather than 50m) I will feel sick and faint. Several times I have passed out in public or had to sit of the floor if a queue in a shop is too long. It’s humiliating, but I have thick skin now. I used to be a cross country runner.
 
The UK trial is contradicted by a landmark report made by the American Institute of Medicine this year which examined all the current evidence and came to the conclusion that ‘ME/CFS is an acquired, chronic multi-systemic disease characterised by significant relapse after physical, cognitive, or emotional exertion of any sort.’ In contrast to the PACE trial which selected patients solely on the basis that they experienced ‘fatigue’ for at least six months, the IOM report states that: ‘The disease includes immune, neurological and cognitive impairment, sleep abnormalities and autonomic dysfunction, resulting in significant functional impairment accompanied by a pathological level of fatigue.’
 
The report found that ME patients are more functionally impaired than those with type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis and end-stage renal disease.
 



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

 
http://www.virology.ws/2015/11/13/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.
 
Sincerely,
 
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

 
http://blogs.new.spectator.co.uk/2015/11/rod-liddle-knows-nothing-about-me/
 
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

 
http://uttingwolffspouts.com/2015/10/28/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.

 
http://voicesfromtheshadowsfilm.co.uk/2015/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 
 
http://www.virology.ws/?s=Trial+by+Error
 
http://www.virology.ws/2015/10/21/trial-by-error-i/
 
http://www.virology.ws/2015/10/22/trial-by-error-ii/
 
http://www.virology.ws/2015/10/23/trial-by-error-iii/
 
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
 
http://thetruthaboutcancer.com/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)
Stock
Broth
Natural Beef Or Chicken Flavoring
Hydrolyzed Vegetable Protein
TVP (Textured Vegetable Protein)
Glutamate Textured Protein
Gelatin Yeast Nutrient
Autolyzed Yeast
Caseinate
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

 
http://blog.drbrownstein.com/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.
 
DrB
 
1.  J Am. Heart Assoc. 2015;4:e001726
2.  J. Am. College of Cardiol. 2015;65:1273-82
 



October 2015
 
Patients battle for justice

 
http://blog.oup.com/2015/09/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.)
 
http://www.thecitizen.org.au/news/new-research-gives-insight-chronic-fatigue-syndrome
 
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

 
http://www.methenewplague.net/Episode-Four.html
 
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

 
http://www.ageofautism.com/2015/08/dr-andrew-wakefield-speaks-out-on-cdc-vaccine-science.html
 
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

 
http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=20885
 
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

 
http://www.investinme.org/IIME-Newslet-1507-06.htm
 
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.
 
References:
 
1              EMEA Joins European Federation of Neurological Aassociations
2              Biomedical Research into ME Colloquium 5
 



July 2015
 
Chronic fatigue breakthrough offers hope for millions

 
http://www.newscientist.com/article/mg22730283.000-chronic-fatigue-breakthrough-offers-hope-for-millions.html#.VZU_UvlVikq

(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
https://www.facebook.com/bbcradiobristol/videos/909309709126136/
 
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

 
http://www.meactionuk.org.uk/Mar-to-Suzanne-OSullivan.pdf
 
Dr Suzanne O’Sullivan
National Hospital for Neurology and Neurosurgery
33 Queen Square
LONDON
WC1N 3BG
 
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

 
https://www.goodreads.com/review/show/1300842864
 
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

 
http://www.meaction.net/2015/05/29/me-associations-mecfs-illness-management-survey-results-cbt-get-pacing/
 
ME/CFS ILLNESS MANAGEMENT SURVEY RESULTS
 
“NO DECISIONS ABOUT ME WITHOUT ME”

 
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.
 
REPORT SUMMARY
 
“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.
 
REPORT CONCLUSIONS
 
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
 
http://www.cortjohnson.org/forums/threads/the-news-from-the-london-invest-in-me-conference.2547/
 


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E-mail: hazel <at> oneagleswings.me.uk