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!
Chronic fatigue breakthrough offers hope for millions
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"
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.
Dr Suzanne O’Sullivan
National Hospital for Neurology and Neurosurgery
33 Queen Square
9 June 2015
Dear Dr O’Sullivan
I write to you as an Independent crossbench member of the House of Lords where I have been since 1975. I am a Deputy Speaker in the House. For more than 20 years I have represented the interests of people with ME/CFS and other MUPS. I am patron of several ME charities and Chairman of Forward-ME.
I have read David Aaronovitch’s review of your book: “It’s all in Your Head – True Stories of Imaginary Illness” and I have listened to what you had to say on Radio 4’s Start the Week programme yesterday, though I have not read your book. Aaronovitch quotes you in the introduction to the chapter on ME as admitting that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least.” He goes on to say that “This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic – caused by the mind and not by a disease – is intensely hostile. I have experienced this hostility.” I assume the last sentence refers to him personally.
Sadly, both you and he are right about the hostility to the views you both promote, but you give the wrong reasons for that hostility. In recent years there have been a host of papers that demonstrate that ME/CFS is a disease as well as an illness. Firstly the Canadian Consensus document on ME/CFS, published in 2003, gave good guidelines for diagnosis and treatment of people with ME. This was followed by the more comprehensive Myalgic Encephalomyelitis - International Consensus Document published in 2011. More recently, the highly respected US Institute of Medicine in its report “Beyond Myalgic Encephalomyelitis/ Chronic fatigue Syndrome: Redefining the Illness” released on 10 February 2015, made clear that the primary message of the Committee’s report is that “ME/CFS is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients.” Patients with the disease have always known this and are, understandably, deeply hurt and offended by the denigration they receive from some medical practitioners.
I admire the fact that you believe that people who suffer psychosomatic illnesses should be treated with compassion and understanding but I am equally disappointed that you appear to have failed dismally to keep abreast of current research into ME/CFS. Had people like you in senior positions really tried to discover what is at the root of the symptoms suffered by the patients that you see more progress might have been made in the diagnosis and treatment of this dreadfully neglected disease.
For example, on 30 May this year in Metabolomics Armstrong et al wrote: “Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue patients.” Have you ever thought of metabolic profiling for your profoundly fatigued patients, I wonder? I do realise that there are vast numbers of papers of variable quality published each year, but I really do think that if one is professing an expertise in a particular disease or illness one should try to keep abreast of current research, don’t you?
You appear to be unaware that research shows that ME is an organic multi-system neuro-immune disorder with protean symptomology; some consider it likely to be an autoimmune disease with the target organ being the vascular endothelium.
For the avoidance of doubt, here are some facts that may have escaped you:
• Since 2005 ME has been included in the UK National Framework for long-term neurological conditions.
• On 30 January 2006 the then health Minister, Lord Warner, said on record: “There is only one World Health Organisation International Classification of Disease code for chronic fatigue syndrome/Myalgic encephalomyelitis, which is G93.3.” (HL3612)
• On 2 June 2008 the Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham) stated: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition ….My Lords, I have acknowledged that CFS/ME is a neurological condition.” (HLPQ: Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
• On 21 November 2011 Lord Freud, Minister for Welfare Reform, confirmed in a letter to me that the Department for Work and Pensions does not consider ME/CFS to be a mental disorder. The letter was unequivocal: “the Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under the ICD code G93.3, subheading other disorders of the brain’. The DWP is in agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder.”
• The US National Institutes of Health, one of the world’s foremost medical research centres, convened a Pathways of Prevention working group which, in December 2014, published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. It is an important document as it signifies a major change in attitude towards ME/CFS. For example: “Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS.
“This is not a psychological disease in aetiology.
“fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS.”
As a neurologist, I am sure you will find these views of interest.
Further research from the US posits that true ME (as distinct from the ubiquitous chronic “fatigue”) is indeed an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity ….Profiles of ME/CFS subjects also differed from those of MS subjects, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation as compared with those with MS” (M Hornig et al: Molecular Psychiatry 31 March 2015: doi:10.1038/mp.2015.29)
The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder.
I do hope that you will take my submission seriously and reconsider your belief that ME/CFS is a psychosomatic disorder.
I look forward to receiving your considered response.
Countess of Mar
Copy: David Aaronovitch.
Chatto and Windus – Lisa Gooding, Publicity.
Book Review by Nasim Marie Jafry: It's All in Your Head: True Stories of Imaginary Illness
I imagine the publisher was excited by Dr O'Sullivan's 'ideas' - I saw the words 'groundbreaking' and 'controversial' in one of the blurbs. Imaginary illness carries notions of madness across the centuries, as readers we are intrigued - and seduced. However, having read the chapter 'Rachel', which deals with a young woman with 'ME/CFS' - I can say that the book is certainly not groundbreaking, but rather, in the case of ME, an irresponsible recycling of a dying - very dangerous - narrative, which has been perpetuated by psychiatrists since the nineties. And I'm afraid I find her style to be unengaging and toneless, though I wonder also if that is a kind of clinical constraint.
So her ideas must be sparkling and new if I am to be pulled in.
While vigorously suggesting that patients with myalgic encephalomyelitis (ME) have false illness beliefs, she then bases the entire chapter on her *own* beliefs. There is no evidence whatsoever to prove that ME is psychosomatic. There is however growing robust evidence that ME is a complex neuroimmune illness, and the key to unlocking the puzzle is ever nearer - biomedical researchers worldwide are excited and hopeful about finding a unique biomarker. Dr O'Sullivan acknowledges that there is evidence of immune abnormalities but then chooses to ignore them completely and goes off on her wild somatisation spree. She seems not to *want* the science to progress, so zealous is she in her beliefs.
The whole chapter on 'Rachel' is manipulative and incoherent, illuminating only in what it omits. I know what the gaps are, so I can see the huge holes. She wrongly says that graded exercise (GET) is the most effective treatment, even although this treatment has been thoroughly discredited, it makes patients worse. This psychologising of ME is extremely harmful to patients, as patients and true specialists have been pointing out for years.
I have had virally-triggered ME since 1983 - I was nineteen years old, an undergraduate, unlucky to get a nasty enterovirus - and was diagnosed by a consultant neurologist, after EMG and muscle biopsy and many blood tests, which confirmed abnormalities. I had been ill for eighteen months at the time of diagnosis, steadily getting worse, and, of course, had never heard of ME then, few people had (I didn't go upstairs to my room and google). My initial treatments included a plasma exchange with immunosupression, and anti-viral drugs. And yet Dr O'Sullivan denies hotly in her book that immunotherapy is used for ME, anywhere. She also seems unaware of the anti-cancer drug trial going on in Norway just now. The scientists have recently been in London discussing their trial at an annual ME conference, which attracts scientists from all over world.
She also fails to mention the huge confusion caused by the different criteria for ME - the CFS (chronic fatigue syndrome) label was introduced in late eighties in UK and the criteria for ME were widened and diluted, with the result that anyone with unexplained 'chronic fatigue' was being diagnosed with ME. This conflation of classic ME and CFS has caused a major headache for patients (no pun intended). Patients who do have psychiatric-based fatiguing illness are sometimes being misdiagnosed with ME. The conflation has, naturally, caused immense problems with diagnosis/research; moreover, severely ill/bedridden patients with actual ME are not being included in trials.
O'Sullivan also makes no reference to post-exertional malaise (PEM), which is unique to ME, exhaustion (physical and mental) after trivial exertion, she talks only generally of 'fatigue'. She ignores the disabling cognitive dysfunction. Neither does she mention orthostatic intolerance, the inability to be upright, stand for long, another cardinal feature. She basically excludes all the symptoms of ME in her discussion, bar 'fatigue'. She seems to think managing ME is managing fatigue, and Rachel 'fails'.
I honestly wonder if Dr O'Sullivan truly believes what she has written or if she needed to pad out her book as she didn't have enough real psychosomatic illnesses for the pot. And she knows writing about ME as a psychiatric illness will be immediately controversial - even when she is wrong. Whatever her motive, she has failed spectacularly to keep up with the research and she has insulted not only ME patients but the whole scientific community engaged in ME research.
***Update: I just want to add that this may be one of the most revealing passages in the ME/CFS chapter:
'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'
There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the case study with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.
Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable.
Takeaways From The ME Association’s CBT, GET, and PACING Report
The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website) is comprehensive and only part 1 of 2. Part one, outlined below, deals with the qualitative and quantitative analysis of the study data. Part 2 (already underway) will cover illness management techniques from the patient perspective and proposed amendments to the NICE guidelines. Direct quotes from the report are bolded below.
“With regard to the effect courses had on illness severity, we found that GET resulted in the most significant change with more patients who attended such courses reporting their illness had become more severe as a result.”
Graded Exercise Therapy or GET made most patients with ME/CFS get worse. According to the study results, about 75% of people who participated in a GET program felt that their illness got more severe as a result.
Where patients attended a CBT, GET or Pacing course which had no overlapping elements of the other two interventions, more reported an improvement in symptoms following their Pacing course than did those who attended either of the other courses. CBT resulted in 91% of participants feeling their ME/CFS symptoms were unaffected or made worse, GET 88%, and Pacing 55%.
Looking at the numbers, cognitive behavioral therapy (CBT) and graded exercise therapy seem to have a similar result. But when you look at the graphic there’s a very important distinction. While 74% of patients on graded exercise therapy got worse, 73% of people on cognitive behavioral therapy had no change to their condition. For most patients, ME/CFS symptoms were not improved by cognitive behavioral therapy but only 18% reported a worsening of their condition.
It was clear that the majority of patients attending Pacing courses with no overlapping elements found this management approach more appropriate to their needs than did those who attended either CBT only or GET only courses. Only a small minority of GET and CBT courses were appropriate to needs.
Only 8% of those who participated in cognitive behavioral therapy and 12% of those in graded exercise found it improved their ME/CFS. By comparison, 45% (or nearly half) of patients with ME/CFS improved by participating in a pacing course!
Symptoms were reported as having improved or as remaining unaffected by more patients where therapists leading a course recognised ME/CFS to be a physical illness than where therapists believed the illness was psychological. Symptoms were deemed to have been made notably worse where courses were led by therapists holding this psychological belief even for Pacing.
This may be one of the most important distinctions in the report. With a 45% success rate, pacing cannot be considered a surefire treatment for ME/CFS. Instead, the course was dependent on the therapists leading the course. Without an understanding of the physical (not psychological) nature of the illness, the treatment was not as effective. Therapists offering pacing courses should recognize ME/CFS as a physical illness in order to maximize a patient’s chance of improvement.
Patients who were not offered or who were refused courses reported the main reason as being that no courses were available in their area. The second reason was judged to be that many patients were considered unlikely to benefit from the offered courses, and also of note was a lack of access to courses and no available home-visit option.
If patients don’t have access, they’re not going to be able to attend. That’s the main takeaway from this section. Disregarding those patients who had access but chose not to attend an offered course, most patients who didn’t participate did so because they couldn’t. Courses may not be available to those who live far from a major treatment center and especially to the severely ill who lack the ability to leave the house and attend a course.
For those who were on benefits, it was most notable that irrespective of the course undertaken, claims remained largely the same with few reducing or stopping their benefits. However, net overall increases were seen in benefits following courses in CBT and GET compared to a slight decrease from those attending Pacing courses.
Disability benefits were mostly unaffected by participation in any of the courses. But it’s not surprising that there was a slight increase in disability benefits for some patients after participating in cognitive behavioral therapy and graded exercise therapy since many patients became more severely ill. There was also a slight decrease in disability benefits for some after participating in a pacing course, likely due to an overall improvement. But all these changes were small and did not occur for the majority of patients.
We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.
Cognitive behavioral therapy had no noticeable impact for the majority of ME/CFS patients so the report concludes that it should not be considered a primary treatment option.
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
Graded exercise therapy made the majority of ME/CFS patients get worse so the report concludes that it should be withdrawn completely as a primary treatment.
Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.
Pacing won. Out of the three, it showed the most positive results and the fewest negative results for ME/CFS patients. But it’s important to remember that the positive results were more strong when therapists acknowledged ME/CFS as a physical and not a psychological condition.
The News From the 10th London Invest in ME Conference, May 2015 –
We have an illness called Myalgic Encephalomyelitis. You may know it as ME or Chronic Fatigue Syndrome.
You will rarely see us. Like the iceberg below water, 90% of us are invisible. We are at home, in bed. When you do see us, we look OK. Slow, pale and drawn, yes, but you will see no scars or bandages. Yet we are very ill.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death but we are treated as though we just lack the will to do something. When young, this devastating illness is the biggest cause of long term absence from school. It robs us of our youth. When older, we lose our jobs, friends, and often our carers. That’s what our illness does.
The 10th of May is the start of ME Awareness Week. The ME Association has a very simple message. “Take ME seriously”. With your awareness and understanding, we can change the damaging perceptions of this illness and help to improve the lives of those who face it.
Chairman, The ME Association
The 25% ME Group - 20 Years of Supporting People with Severe ME
In 1995 a number of people were suffering from a condition known as ME (Myalgic Encephalomyelitis). These people were extremely sick and disabled with the illness.
They felt alone, isolated and unaware that they were not actually alone in their suffering.
Sufferers wondered what the cause of their illness was? Why were they suffering from this? Were they imagining they were the only ones who were so ill? The medical profession seemingly could not understand this illness or do anything to alleviate the suffering caused by it.
Those who were severely affected at the time felt there was nowhere to turn for help, information or advice. (Even the established ME charities did not seem to recognise the severely affected).
Some of these people then decided to form a group specifically to try to support the severely affected, namely the 25% ME Group.
The 25% ME Group started very small. We provided a newsletter and a contact list of people who were severely affected. The group has grown over the years from a handful of people to many hundreds of members. The group provides information and various services to help and support those who are very sick with the illness. In addition, the group also provides information for carers and professionals.
From small beginnings, the group has grown into an organisation that brings light and a sense of being believed to these very ill people and also, very importantly, we remind them they are not alone.
Further information about the group: The 25% M.E. Group is a unique nationwide community based voluntary group. We have two paid members of staff and a number of volunteers - most of whom have severe M.E. We provide a range of services to people affected by severe M.E.
Because of the intensity of the symptoms and disabilities experienced by severe M.E. sufferers we seek to alleviate the isolation which having this illness can cause. The 25% M.E. Group encourages: communication between members; participation in the Group at a number of levels; assistance with articles and information for the newsletter etc. These are just some of the initiatives employed by the group.
What is M.E: Myalgic encephalomyelitis is characterised by a combination of muscle pain (myalgia), and neurological and cognitive symptoms such as memory loss and concentration difficulties (hence ‘encephalomyelitis’).
Clinical symptoms have been found to be consistent in over sixty recorded epidemics of M.E. spread all over the world. Patients had disabilities due to persistent symptoms of pain, fatigue and loss of endurance to normal physical activities, with abnormal muscle fatiguability and conspicuous deterioration of symptoms after exercise (post exertional malaise).
The Role of Cytokines in Muscle Fatigue in Patients with Chronic Fatigue Syndrome (CFS).
Kate Earl(1), Giorgos Sakellariou(1), Daniel Owens(2), Melanie Sinclair(1), Manuel Fenech(1), Graeme Close(2), Clare Lawton(3), Louise Dye(3), Micheal Beadsworth(1) and Anne McArdle(1)
1) Institute of Ageing and Chronic Disease University of Liverpool United Kingdom
2) RISES Liverpool John Moores University United Kingdom
3) Psychological Sciences University of Leeds United Kingdom
CFS is characterized by profound levels of persistent/recurrent fatigue. It is proposed that chronic, low level inflammation may play a role in this fatigue.
We recruited 100 untreated patients with CFS (average age 33±12) and 100 age and sex matched healthy controls (HCs).
Serum levels of TNF-α were assessed using ELISA. Subjective fatigue was determined by questionnaire and muscle function tests were undertaken in subgroups in which maximal voluntary contraction (MVC), electrically stimulated muscle force generation and rate of fatigue were assessed in the quadriceps muscle.
Subjective fatigue was higher in patients with CFS compared with HCs. Preliminary analyses showed that serum TNF-α was undetectable in 97% of HCs, whereas 15% of patients with CFS had detectable (4.4+/-0.18pg/ml) serum TNF-α. MVC was significantly reduced in subjects with CFS compared with HCs.
No difference was seen in stimulated muscle fatigue between groups.
This preliminary data suggests that a sub-group of patients with CFS may have low level inflammation and analyses are underway to further characterise other inflammatory markers in serum and muscle of these patients and to determine whether such changes could affect indices of muscle function or central fatigue.
Welcome to London for the IIMEC10 International ME Conference for 2015.
Invest in ME is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME.
IIMEC10 is the tenth annual CPD-accredited biomedical research conference organised and hosted by the charity and now attracts presenters, researchers, physicians, patient groups and journalists from around the world.
Below one will find a description of the conference, how to register, the venue and details of the presenters.
Research into Myalgic Encephalomyelitis - specifically biomedical research into ME - has, thanks to conferences and research meetings organised by Invest in ME, emerged into the mainstream of research and is receiving increasingly more attention from both major research institutes in several countries as well as national health organisations.
Organisations responsible for medical research in several countries have already stated that ME would receive more urgent attention. In Norway the Norwegian Health Directorate have allocated funding for biomedical research into ME following the 2011 double blind randomised clinical trial using Rituximab (Anti-CD20 monoclonal antibody) by Fluge et al (PLoS 6:10.Oct 2011) to successfully treat ME patients. There is increasing research evidence of immune dysfunction in ME patients.
The UK MRC has previously stated - "There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes." The IIMEC10 conference will show some of the major initiatives being taken to set up a collaborative strategy for biomedical research into ME to further this complex but exciting area of research leading to appropriate patient care and mainstreaming this field of research as well as this disease.
WHO SHOULD ATTEND
The conference will appeal to healthcare professionals, doctors, nurses, paediatricians, occupational therapists, researchers, ME support groups, people with ME and those working in social services, educational support and the media. The conference provides an opportunity for people within government, health departments, social services and education to be able to be informed of the true nature of ME and of the current status of diagnosis, treatment and current/future biomedical research possibilities.
If help is needed regarding any aspect of the conference please use our Contact Us page. On the conference day the charity will have a number of helpers to assist from the point of registration through to the end of the day. Our main web site is at www.investinme.org
PAST IiME CONFERENCES
IIMEC10 will be our tenth annual international conference for ME. The conference regularly attracts clinicians, researchers, healthcare staff, charities, support groups and patients and carers from twenty countries around the world.This allows unique networking opportunities and increase the potential for one of the charity's main objectives - international collaboration between researchers.
ROYAL SOCIETY OF MEDICINE
ME/CFS: Frontiers in research, clinical practice and perception.
THE POLITICS OF ME/CFS.
Ladies and gentlemen, I am grateful to the Royal Society of Medicine who have given me the opportunity to offer a political view of ME/CFS.
I will have been an Independent Crossbench member of the House of Lords for forty years in the autumn. For more than twenty of those years, with the help of a great many other people in the community, I have been trying to persuade governments of different colours that ME/CFS, together with organophosphate sheep dip poisoning, Gulf War Illnesses, Aerotoxic syndrome and other medically unexplained physical symptoms, known as MUPS, are not figments of patients’ imaginations, nor are they nocebo effects, but are very real conditions.
In so far as ME/CFS is concerned I have had some support fromMembers of Parliament who have constituents with the illness, but have been ploughing rather a long and lonely furrow in the Lords. For the sake of brevity, I will call the condition ME, which is what most patients prefer, except where accuracy demands otherwise. I know that the medical profession uses the shortcut term CFS, but that covers a much wider range of conditions that what I know of as classic ME.
I came to ME through parents who had used OP head louse shampoos on their children – treatments recommended by doctors and school nurses. Some children developed symptoms which were labelled ME within months of the treatment. I don’t know whether you recall that the advice was to shampoo the child’s head and, without rinsing, cover the head with a shower cap and leave overnight, to be rinsed off in the morning. Anyone with any knowledge of OPs knows that one of the most absorbent parts of the body is the scalp, and that some individuals are more genetically susceptible than others; so these poor children were poisoned.
Very unfortunately, once a person, be they child or adult, has the ME label all support and assistance from the medical profession and social services seem to vanish into thin air. Despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10G93.3 and this classification being accepted by Ministers of both the Department of Health and the Department for Work and Pensions; despite major reports, one by the Chief Medical Officers working group on CFS/ME in 2002 and two others by the All Party Parliamentary Group on ME in 2006 and 2010, all of which recognise the severe impact that this disease can have on many patients’ lives, far too many of those professionals treating and caring for people with ME have not received the message. The CMO Report mentions that “The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconsistent illness.” Despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long.
All Party Parliamentary Groups are supposed to be for the enlightenment of Members of Parliament from both Houses. The purpose of the APPG for ME is to: “Raise awareness of ME and support the improvement of health, social care, education and employment opportunities for people affected by ME.” There was a problem with communicating with Ministers effectively at what turned out to be large public meetings with few MPs present. After consultation with the leaders of the main ME charities and support groups, Forward-ME was formed in 2008 under my chairmanship. We have met successfully with people such as Steven Holgate, Lord Freud, Edward Timpson MP and ATOS as well as others in the health, social care and education world and are, I believe, respected for the respect that we show to each other and to our speakers. The APPG was re-formed in 2010 on these same principles and we now work together very happily, though meetings are still attended by very few MPs.
When we think of politics we tend to think of party politics– what goes on in the Westminster village, in local government or at the parish pump. It was a while before I recognised that amongst other settings there are medical politics. Until the 1980s, when the Press picked up on the ‘Yuppie flu’ diagnosis, there seems to have been tacit acceptance that ME was a real physical condition even though the cause was then, as it is now, unknown. There were a number on notable British doctors, amongst them Dr A Melvin Ramsay, who flew the flag for Myalgic Encephalomyelitis from the 1950s onwards, Dr Elizabeth Dowsett, Dr Alan Franklin and Dr John Richardson who, from their observations of ME patients over decades, were convinced that ME was caused by persistent viral infections. This persistence would appear to be confirmed by Dr Mady Hornig and Dr Ian Lipkin at the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in their 27 February 2015paper – ‘Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment’, who have identified distinct immune changes in patients, said to represent the first robust physical evidence the ME/CFS is a biological illness as opposed to a psychological disorder., though I readily acknowledge that we still have a long way to go.
It was when a small group psychiatrists from the UK, Europe and the USA purloined ME and renamed it CFS in the mid-1980s that the real problems began. They insisted that it was a psychosocial behavioural problem that could be readily overcome with a course of cognitive behavioural therapy and graded exercise. From their earliest beginnings, they managed to attract the attention of the media and of their medical colleagues with their assertions. They found their way onto government advisory committees and research organisations; onto the boards of medical publications and into insurance companies where their message was greeted with apparent delight because these organisations would not have to think any more. The cause and solution were at hand. No need for doctors to do too many investigations; no need to perform anything but psychological research; no need for social security payments by finding that claimants are really fit for work. They developed a means of stifling opposition by refusing to publish papers showing biological causation and, joy of joys for the insurance companies found that patients were reporting a psychological condition which was excluded in their policies. As recently as last year CFS was described as ‘a culturally driven disorder with no known organic cause’ in the BMJ.
This school of psychiatrists has persisted in their view despite more than 6,000 peer reviewed papers, including experimental studies which demonstrate a range of biological findings associated with people with ME. Funding for biological causes and treatments is miniscule against the funding for psychiatric or psychological ones. Researchers such as those funded by Invest in ME and ME Research UK, have funded excellent pilot and seedcorn studies on a shoestring, while a significant number of biomedical research applications have not been funded by the MRC in the past 20 years, including some targeted at pathophysiology. It is hard to believe that all were written so badly that they could be rejected, particularly as some came from established researchers with a track record in this and other fields. Could it be that the expert reviewers were, once again, psychiatrists who appeared to have an interest in supressing research that counters their views? Many suspect this to be the case. This can only be political. It is also political suicide for researchers in major universities to suggest that they conduct studies into biological causes for ME.
The largest and most expensive state-sponsored treatment studies (the PACE and FINE trials) which both focused exclusively on psychosocial management cost in excess of £6 million, dwarfing funding for biomedical intervention, yet both failed to show improvement on real-world outcome measures. These huge sums have taken us no nearer to finding a cure or the underlying cause.
There is a silver lining – more recently MRC funding has been targeted on more biological research, though the amounts of funding allocated are still miniscule in relation to that for other diseases.
It is extraordinary to me that men and women who are trained to “First do no harm” and to “Listen to the patient for they will probably tell you the diagnosis” cannot but be aware of the enormous damage they are doing to a very large number – more than 200.000, patients with this condition. By recommending that too many investigations should not be conducted because they encourage illness behaviour they are risking missing vital findings of treatable conditions such as endocrine dysfunction, rarer medical conditions or even cancers that present with chronic fatigue. How, with all the publicity, can they not be aware of the misery, neglect and, too often, abusive treatment that I can only describe as barbaric that is meted out to patients with a diagnosis of ME?
I am aware that multiple sclerosis, Parkinson’s disease and diabetes were all once in the domain of the psychiatrists and that this domain is shrinking as new discoveries are made. To compensate, we have a compendium of purely subjective conditions with labels such as conversion syndrome, pervasive refusal syndrome, and neurasthenia to name but a few. There is no biological explanation for these, but they do help the uninitiated to believe that the condition is psychological.
How can we change this situation? Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the last century wrote:
“Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted.
It would create a feeling that is extremely uncomfortable, called cognitive dissonance.
And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”
Ladies and gentlemen, I know how very difficult it is to say “Sorry, I got it wrong”, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.
Since my last blogpost on the stages of ME, some of you have raised questions about cases that sadly don't ever seem to go into remission, or improve enough for people to enjoy a reasonable quality of life. That's what I am addressing here, grounded both in my own experience and in the knowledge of others. It is part of the spectrum of this disease, and we need to see the whole picture.
I first met microbiologist and ME specialist Dr Elizabeth Dowsett in 1985 when she diagnosed me with ME. Shortly afterwards, she telephoned with the news that my blood tests had revealed a recent infection and several weeks after that, other tests, being analysed as part of a research procedure, showed that the causal agent was the enterovirus (or gut virus) Coxsackie B. In ME, it often is, as she explained. Coxsackie viruses are related to polioviruses, being part of the same family.
What I didn't know at the time – do any of us? - was that mine would develop into almost the worst case of ME that Dr Dowsett had ever seen. I won't attempt to describe that here, although I do intend to publish a personal memoir to convey something of the dramatic severity and trauma associated with that level of disease.
When, years later, I came to interview Dr Dowsett, after a painful endurance test while my body struggled to repair itself, she made clear to me that whilst the body will do its best for us, sometimes it just can't get the job done.
If she was right about the persistence of virus in our tissues (and I have no reason to think she wasn't, given Dr John Chia's discoveries of viral particles persisting many years later in the stomach lining of patients) then we never truly 'recover' in the pure terms of totally eliminating the invading organism. But that happens with other organisms too, such as the herpes virus that causes some people to get recurrent cold sores when they are run down. Most of the time it doesn't bother them. This is a way that the body has learned to accommodate invaders rather than always mounting a deadly battle.
Some people who have been through ME seem to reach periods in their lives when they joyfully find themselves capable of physical things they thought they wouldn't be able to do again. After the worst years, some of us find other, gentler, physical things to replace those we can no longer manage. Can we call any of this 'recovery'? It's an odd word, as people use it in their own way, and even researchers have to define what they mean by recovery, which might not be what we would mean.
I have limitations that have never totally gone, and I live my life around certain restrictions. The R word is bandied around too loosely, but if by 'recover' we mean that we are totally 'over it' forever, then that idea does not seem to be reflected in what happens inside the body. What can happen is an accommodation with the virus that caused the ME in the first place, a sort of equilibrium. This balance, however, can be upset, and indeed, is apparently not reached in every case.
If you haven't read my previous blog post IT'S THE IMMUNE SYSTEM, RIGHT? I would prefer that you read it now, before continuing with this one. It's not all that long. Just scroll down and look through it. Because the next few paragraphs are a bit scary, and if you're feeling upset, miserable or frightened because of what's happening to your body, it's a good idea to reassure yourself by learning how the 'tendency' in ME (as explained to me by Dr Dowsett) is for the body to improve over time as it tries to do what it's programmed to do – heal us. Often this happens in spite of, rather than because of, any therapies or medications or alternative treatments that others recommend.
The body has been injured, damaged. We must look after it, love it, praise it and trust it to do its very best. We must take good care of ourselves and not let people pressurize us into doing things that will interfere with that healing process.
The last thing we want is to provoke a deterioration, even as we naturally try new things when they seem possible. Keeping a balance is important. As I've personally experienced, once a serious setback has happened, it can be a long haul to get back to our previous level of improvement. And we don't even know if we'll get there; uncertainty is perhaps the worst thing of all. What will my future be? We must give it our best shot.
Go off now and read my previous blogpost...
Welcome back. I hope you found that information encouraging. We must, however, validate the experience of those who do not 'recover', for no fault of their own. And we must not hide away the unpalatable truth, that some people suffer continually in darkened rooms unseen by the world. As the Chief Medical Officer's Working Group Report stated in 2002: Overall, there is wide variation in the duration of the illness, with some people recovering [that word again] in less than two years, while others remain ill after several decades. A minority of those with CFS/ME remain permanently severely disabled and dependent on others.
That is a sobering statement. Dr Melvin Ramsay wrote of the spectrum of cases, including one case that had at the time of writing lasted 40 years. He stated: I am fully satisfied that at a conservative estimate 25% of victims of ME have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.
Ramsay was comparing the real, classic, historic ME with other forms of postviral syndrome. Dr Chia's 21 century work corroborates what Ramsay documented, showing double stranded enteroviral RNA present in the stomach lining of patients after 10 years. He is quite adamant that this is a causal relationship, with the level of symptoms reflecting the degree of what I would call infestation.
Ramsay describes two forms of chronic ME. One form shows a recurring cycle of remission and relapse, with remissions lasting as long as three years in his experience. The second form is more tragic in that no remission occurs. He talks of the restricted lifestyle of these patients, and adds: A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature.
I myself find it more comfortable not to lie totally flat when sleeping, and this is a fascinating analysis of why that might be. Despite the persisting weakness in some of my muscles, I am constantly amazed at what my body has managed to achieve. But I try not to take it for granted.
What have others had to say? In a paper published in 1994 by the Nightingale Foundation in Canada, Byron Hyde MD and his colleagues reported that out of 1826 respondents to their survey, the average length of illness was approximately seven years. They found only a two per cent recovery, which, they said, 'suggests that the large number of pharmaceuticals, alternative medicines and various treatments used' had been 'largely ineffective'. We are now 21 years on from that statement, and if anything, we are in a worse situation, with exercise regimes and psychological therapy having provided one huge distraction. We see muddled terminology, mixing of patient groups under the banner of 'CFS', and often misguided treatment. I particularly see this in regular reports from parents stating that their children have been made worse.
In my view, until both the research establishment and Government truly accept the viral nature of this illness, and do something about developing targeted antivirals, and vaccinations, as they have done in other serious disease, it will continue to be down to us as individuals and families to resist over-demand and to insist on taking the very best care of ourselves in order to maximise our chances of 'recovery'.
In my book, I am revisiting my interview with Dr Dowsett and her work. She goes into some detail about the dangers of ignoring the true nature of ME, and what that can lead to.Which is not nice. Not nice at all.
ME has to be taken seriously. That's why I continue to shout about it. To anyone who will listen.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an unexplained incapacitating illness that may affect up to 4 million people in the United States alone. There are no validated laboratory tests for diagnosis or management despite global efforts to find biomarkers of disease. We considered the possibility that inability to identify such biomarkers reflected variations in diagnostic criteria and laboratory methods as well as the timing of sample collection during the course of the illness. Accordingly, we leveraged two large, multicenter cohort studies of ME/CFS to assess the relationship of immune signatures with diagnosis, illness duration, and other clinical variables. Controls were frequency-matched on key variables known to affect immune status, including season of sampling and geographic site, in addition to age and sex. We report here distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease duration revealed that early ME/CFS cases had a prominent activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks. We found a stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static. These findings have critical implications for discovery of interventional strategies and early diagnosis of ME/CFS.
(To read the whole article, click on the link above. A PDF version can be downloaded by clicking here.)
Yesterday saw some positive media headlines for the ME community. The research from Columbia University by Hornig et al, concerning the level of cytokine activation as a potential biomarker for ME, looks promising. ME research indicating a biological pathology is often dismissed due to the small number of participants but this was a study comprising 298 ME patients and 348 controls, which will hopefully give it more weight in scientific circles. Unfortunately, as is usual with UK media coverage, reporting was not unequivocally positive; the difference in tone between the UK and US media coverage was marked. In the former, most of the usual suspects promoting the psychogenic paradigm were quoted, aided by the Science Media Centre (SMC). There is little hope of this group of psychiatrists going quietly into the night and we will probably experience a backlash from that quarter; they have much to lose if and when the psychogenic model of ME is discredited and the disease is proven to have a biological foundation.
Regarding specific coverage: ‘First Biological Proof that ME is Real Found by Scientists’ states the Telegraph’s headline. Hardly the first given the thousands of papers published showing biological abnormalities in ME patients, and proof is a charged term in science but quite a good headline for a British newspaper (to be fair the ME Association’s reporting was hardly exemplary). The Independent lives up to its usual poor standards when reporting anything ME related; its headline, ‘Scientists Claim to have ‘Robust’ Evidence that ME has a Biological Cause', being especially bad. Note the use of the word claim and the inverted commas around robust and contrast this with their reporting of the PACE trial based research a few weeks ago, ‘Sufferers of Chronic Fatigue Syndrome can Benefit from Exercise'. No doubt is expressed there in the veracity of the researchers’ claims, the suggestion that ME sufferers can benefit from exercise is stated as fact.
The Science Media Centre surpassed itself in its coverage of the Columbia University study. Of seven experts chosen to respond to the study, not one gives a positive analysis, no medical adviser from an ME charity or, non-psychosomatic promoting, ME researcher is quoted. The featured experts are:
Professors Michael Sharpe and Peter White, and Dr Esther Crawley, all notorious proponents of the psychogenic ME model
Professor Stephen Lawrie, head of The Division of Psychiatry at the University of Edinburgh: ‘This is a small study’ he states; a study encompassing 20 participants is small professor Lawrie, one involving over 600 participants is not. One has to ask why is a psychiatrist being consulted?
Professor Derek Hill, a professor of Medical Imaging Science with no known expertise in the field of ME
Professor Naveed Sattar: Professor of Metabolic Medicine at the University of Glasgow. He does have expertise in the field of biomarkers but has shown zero interest in the field of ME research heretofore
Dr Diana Prata: Group Leader, Institute of Molecular Medicine. Again, no evidence of any interest in the field of ME research ‘This specific illness is not in my area of expertise’ really? Yet the SMC calls you an expert.
If the SMC wanted to skew their response towards dismissing the Columbia study and avoid undermining their preferred psychogenic model of ME it would be hard to choose better sources of expertise. The study is by no means flawless or conclusive (what study is?) but it’s a better piece of work than the SMC would lead you to believe. Connie St Louis, former president of the Association of British Science Writers and a senior lecturer at City University, has detailed the SMC’s malign influence on media reporting of scientific stories in the UK, revealing that over half of the SMC’s expert reactions were covered in the press and in nearly a quarter of stories, the only quotes were from the SMC. Louis states ‘The SMC never claims to deliver a balanced [argument], so it’s really interesting that many of them weren’t using somebody independent of what the SMC offered’. The SMC’s media briefings are reported uncritically, with 60 per cent of articles based on their information containing no non-SMC mediated sources. This is especially relevant concerning ME coverage in the British media and explains its bias towards reporting research from the psychogenic realm.
We recently published a blog post concerning a vitriolic article about ME sufferers from the University of Toronto’s Professor Edward Shorter. One of the particularly insightful claims made in his piece was,
‘There have been no convincing new studies, no breakthrough findings of organicity, nothing.
And there never will be.'
I’m not quite sure why he split the sentence up, no doubt to enhance the effect of such a momentous, nay paradigm-shifting statement, but it looks more foolish now than it did a week ago, which is quite an achievement. Needless to say Professor Shorter’s scientific knowledge is zero, I’m only surprised the SMC didn’t choose him as one of their expert commentators on the Columbia study.
A serious point to finish: let us not forget Karina Hansen, currently being ‘treated’ by Per Fink and his followers in Denmark. I believe forcibly removing a young woman from her home to an institution that restricts her liberty, access to her family and subjects her to who knows what form of ‘therapy’, is nothing less than torture. I also find it disturbing that it is another case of a young woman being abused by middle-aged male members of the medical profession. The current climate surrounding ME, ‘all in the mind’, ‘lazy malingerers’ etc. encouraged by the likes of Wessely, White and Sharpe (and formerly by Beard at al), has allowed such cruelties to be inflicted on ME patients. Hopefully we are coming to the end of this era of abuse and can look forward to more biomedical research and effective medical therapy, consigning the over-used biosocial model and psychogenic explanations for physical illness to the dustbin of history.
Not many people will have missed the hoohah about SEID - Systemic Exertion Intolerance Disease - as a proposed new name for ME/CFS. You'll be relieved to hear, this is not going to be a dissection of the IOM report. That's not what I'm writing about.
I'm going to write about ME, and about why, no matter how many names people come up with for the composite 'CFS', ME itself remains what it always was. Myalgic Encephalomyelitis. Well defined by Melvin Ramsay back in the 20 Century. A discrete disease, and not exactly what we would call “benign” (a prefix that was originally attached).
It's six months since I posted here on my Stripeysocks blog (as you see, I've broadened my remit to include Spotty Socks when available... ). Thanks for the messages asking me to post again. The reason I was away was simple. Myalgic Encephalomyelitis. As those of you with ME will know, even if you're much recovered, the chances are that you still have to pace yourself. So do I. 2014 was Tymes Trust's 25 Anniversary Year. That was demanding so much of my energy and time that something had to give. It's good to be back.
Sitting beside me is a copy of Melvin Ramsay's monograph: The Clinical Identity Of The Myalgic Encephalomyelitis Syndrome (second edition). If only the medical establishment had properly adopted his clear description of ME back then, we might never have suffered the indignity and nonsense that is Chronic Fatigue Syndrome, nor rushed willy nilly down that blind alley. “It is fortunate,” he writes, “that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.”
So there you have it. A “sharp contrast” to ALL other forms of postviral fatigue syndrome.
Anything that does not display the clearly defined features of what I have myself referred to as “classic” ME (I'm glad to see how popular that adjective has become) is simply not ME. It is something else, and deserves to be properly diagnosed in its own right.
All this muddled thinking that CFS has engendered has led to patients with genuine ME getting mixed with patients who have something else. No illness can be accurately diagnosed while all are labelled CFS - or worse, chronic fatigue, a symptom of multiple diseases. Many of you will know that I've written about this issue since the 1990s. It can't be repeated too often. People have been short-changed, fobbed off, and some even put in serious danger by being given inappropriate therapies, or having what was cancer labelled as fatigue.
Here is what Melvin Ramsay wrote. It could hardly be clearer.
The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:
A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.
B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,
C. An alarming tendency to become chronic.
He goes on to contrast this with flu. “If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months, it has no tendency to become chronic.”
Once you mix different forms of postviral fatigue together you end up with doctors who can't understand why a child diagnosed with CFS can be severely ill for years. They make extraordinary statements like “You've been ill for too long,” and call in psychiatrists and social workers to probe the family and the child's mental state. They may be accustomed to seeing more common types of postviral debility, quite likely under the label of chronic fatigue, and simply don't know that in with those there will be cases of the 'real thing', the genuine article, ME in all its variability, potential severity and chronicity (duration of illness).
On chronicity, Melvin Ramsay writes of the “alarming tendency” of ME to become chronic. This is “the final distinguishing feature from all other forms of postviral fatigue syndrome”.
At the time of writing, he knew of people who had suffered with ME for over forty years. He states, unequivocally: “I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.” Finally, he comments on the “recurring cycle of remission and relapse”, and on “tragic” cases that do not remit.
Given these sobering facts, it must surely be obvious to anyone, lay or medical, that we must allow children with ME, and adults too, to convalesce and recuperate in a genuinely conservative manner that supports the body's own healing mechanisms. The last thing we should be doing is pushing the body before it has healed enough to do what is being demanded.
I said I wouldn't write about SEID but I will say this: to be diagnosed with SEID, the patient must exhibit an intolerance to effort. That in itself narrows things down. If the definition requires that effort makes the patient worse, we're coming closer to ME itself. The IOM committee quite rightly panned the term 'fatigue' and also replaced 'syndrome' with 'disease'. SEID might fly as a replacement for the hated 'CFS', but it's still not classic ME. Both I and Tymes Trust will continue to refer to ME to distinguish it from other diseases.
I don't think I'm breaking a confidence to say that I'm expecting some new evidence of the type of neurological damage caused by inflammation in ME to become available during 2015. Given that the IOM committee will review in five years, by which time there may be more revelations, I find it very unlikely that there won't be - even in their opinion - sufficient evidence of inflammation for them to agree: Myalgic Encephalomyelitis ('itis' meaning inflammation) was an appropriate name all along.
Footnote: Those of you who've been reading the episodes of my book will know that it's the close relation between ME and polio that I focus on there.
The IOM recently published its report into ME and has renamed the illness to Systemic Exertional Intolerance Syndrome (SEID). This will be a controversial decision and will encounter considerable opposition from patients and doctors. Let us look carefully at the facts.
The name itself tells us nothing about the illness as many illnesses including Cancers and MS cause substantial “exertional intolerance”. Yet these illnesses do not have “exertional intolerance” in their name. The report accepts the illness as a serious biological illness but fails to accept this and quantify this in its diagnostic criteria. Unfortunately the new IOM criteria uses most of the same criteria used in the Fukuda criteria of 1994.
It uses a substantial reduction in physical activity and profound fatigue lasting for more than 6 months unrefreshing sleep and cognitive impairment. The addition of Orthostatic Intolerance being the only new addition to the criteria. What about the immune system abnormalities? the mitochondria abnormalities? the neurological abnormalities? the HPA axis abnormalities? the infections consistently found? the cardiac abnormalities? the genetic abnormalities? the gastrointestinal and microbiome abnormalities? These important biological factors were omitted, left out.
The IOM diagnostic criteria is far too vague, loose unclear and ambiguous. The IOM criteria cannot diagnose or treat any illness. The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient. This is extraordinary, as medicine and science is about identifying and establishing facts and not about making assumptions and presumptions regarding fatigue for 6 months or more.
The new IOM criteria does not deconstruct this complex multi-system illness illness into it’s constituent parts so as to diagnose and treat with precision. This means that patients will not get a proper of diagnosis of ME / CFS or SEID and thus they will not get proper treatments.
Millions of patients will continue to be left in a limbo and many of these will continue to be vulnerable to premature deaths as a result. The following list is a sobering reminder of what happened in the past when vague, ambiguous, unclear and loose criteria were used to diagnose the illness - http://www.ncf-net.org/memorial.htm
In addition the IOM criteria includes co-mormid illnesses in the diagnosis of SEID, and Depression and mental illness are included. This means many of those people with Depression and other mental illness will qualify for a diagnosis of SEID or ME / CFS. This will add these patients to the mix of SEID and ME/CFS patients and this will confuse doctors and researchers, and cause inconsistent research findings and further confuse the research field and the meta analysis of papers. It’s a disaster. It is this inability to accept well known biological makers for the immune system, mitochondria, neurological system, HPA axis, heart etc. which condemns doctors, researchers and civil servants to continue to repeating the same mistakes over and over again, while patients suffer, become more frustrated, and die.
The malign influence of some London psychiatrists continues in the field of ME / CFS and this is evident in the new IOM criteria. The emphasis on fatigue and exertion intolerance and the omission of biological markers proves this point. The excessive research monies wasted by the NIH and British government and other EU governments on CBT, GET and other psychiatric nonsense has robbed the field of quality research into biological factors for over 20 years. Yet despite these setbacks, there are many high quality research papers proving consistent biological makers in the illness.
There are some known biomarkers for the illness – http://www.me-ireland.com/ - Biomarkers - and some forward thinking medical clinics which use these and diagnose and treat the illness - http://www.me-ireland.com/ - Diagnosis and Treatment . The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015. The Open Medicine Institute (OMI) is continuing to fund raise for high tech research into ME /CFS combining immune system, neurological system, gastrointestinal, genetic and endocrine factors in a large research project. This will produce some findings by the end of 2015. The Rituximab and Microbiome projects in Britain are due to begin soon. Also Dr. Lipkin’s microbiome study is to begin in the near future. These provide realistic hope in terms of identifying all biological markers for the illness.
The fine art of deconstructing complex, multi-faceted systems / illnesses into their component parts and understanding their nature and their dynamics and linkages with each other has been lost. The old educational style which focussed on the Trivium form of learning has been replaced with new types of education emphasising superficial analysis and learning, and hasty, inadequate solutions. The quick analysis, the superficial diagnosis, the speedy dismissal, the soundbite, the inability to listen carefully and to investigate, the shallowness of assumptions and presumptions, the lack of depth, the lack of curiosity, the lack of deeper facts and meaning, the lack of clarity are all too common today. This is blocking scientific and medical progress and condemning many people to mediocrity, low quality and failure, and is causing great suffering and frustration for many people worldwide.
With the latest media splurge reading like an advertisement for Cognitive Behaviour Therapy and Graded Exercise Therapy as the answer to ME, families facing child protection investigations must have been reeling in horror. Tymes Trust has now advised 139 families in connection with such procedures, and in a number of these cases the authorities are trying to enforce these very treatments against the parents' will.
If we go back a stage, we find that the authorities have, almost without exception, seemed to believe that children with ME can recover while following a graded school attendance programme; this is of course just an educational version of graded exercise, as we have so often pointed out.
In our experience, it rarely works well, unless the child is either already substantially recovered, or does not have ME at all - which may well be the case, given that 'CFS' criteria are inventions that pull in people with other 'fatiguing' conditions, and this is the diagnosis that is most often used at the moment.
For classic ME, education in the home CONSERVES ENERGY and is more productive, both in terms of convalescence and educational achievement. This is not just an unsubstantiated opinion, but comes from the practical experience of families who have never looked back after deciding to home educate. This really is not surprising, since one of the three principles for managing ME, according to the great ME expert Dr Elizabeth Dowsett, is CONSERVATION OF ENERGY.
However, state education is the child's right. It should be possible to put in place systems of education that do fulfil the aim of conserving energy, without the family necessarily having to remove their child from the school roll and home educate. Virtual education and home tuition can both play a part for families who wish to stay within the state system during what may be a long recovery process. There should be no pressure on a child with ME to get back to school unless they are clearly strong enough to do so without their health or ability to learn being adversely affected.
With all the physical demands that are placed on a child just to get dressed and get to school even before any lessons are attempted, together with the effort needed to move around the school, socialise and carry bags, the typical state approach of graded school attendance for children with ME is frequently unworkable.
When it fails, and if the authorities then prove intractable in their approach, child protection procedures may be used to enforce the programme. And when that fails too, because the family quite reasonably objects, we may see these attempts to admit the child to a psychiatric unit against the parents' wishes, for physiotherapy, graded exercise and cognitive behaviour therapy. In effect, by exercising their right to stay within the state education system, these parents find themselves at risk of 'losing' their child to the state. This is clearly wrong, and a huge injustice.
Given that the initial graded school attendance programme didn't work, and has led to a deterioration in the child's health, how could anyone believe it possible that graded exercise in any form would do the trick?
Statements by exercise physiologist Mark Van Ness, whose research clearly demonstrates the reality of post exertional deterioration, and by Dr William Weir, whose thirty years' experience with ME patients reveals the same phenomenon in a clinical setting, both show the recent media coverage up in a very poor light. It has caused huge upset and distress amongst families. They know it can only make things harder for them when they quite reasonably try to help their child pace themselves carefully, and convalesce effectively.
Former Head Teacher and Executive Director of Tymes Trust
Rational understanding of the symptoms of ME/CFS
The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2814%2900069-8/abstract). Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
Recent media headlines would have us believe that "fear of exercise" hinders our treatment. The papers have each taken slightly different but equally damning headlines:
"Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - Study" The Guardian
"Chronic fatigue syndrome sufferers 'can benefit from exercise'" The Independent
"Exercise can help with ME, scientists say" BBC
"Sufferers of chronic fatigue syndrome ‘can benefit from exercise’" The Irish Independent
"Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition" Mail Online
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph
What is written behind the headlines is no better. Patients were understandably outraged!
The Newry and Mourne ME Fibromyalgia Support Group have spent much time and effort trying to ensure that medical professionals understand the real physiological problems that ME patients have with aerobic exercise, and less than a year ago Dr Mark VanNess eloquently explained these problems to a packed house in Stormont, Belfast. (More detail here)
Joan McParland (founder and co-ordinator of the Newry and Mourne Group) therefore wrote to Dr VanNess to ask for his response to the these press reports.
The group are delighted that Professor Mark VanNess has agreed that we can share his response. We certainly hope it will help clear up any misunderstanding about exercise for ME patients. His letter is quoted below:
I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.
Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion.
Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.
We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.
Good luck to you and your organization as you help us all accurately portray this illness.
J. Mark VanNess, Ph.D.
Professor; Departments of Health and Exercise Science and Bioengineering
University of the Pacific
Stockton, California, USA"
Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015
The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2014).
My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening.
I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.
On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary.
To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother.
In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.
I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient.
The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.
Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?
The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.
I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.
The debate was answered by the Parliamentary Under Secretary of State for Health, Earl Howe, and the full text can be read HERE.
As another year of agony threatens to grind us into awful nothingness, as I hang dishevelled with bleeding fingertips, digging deep, wrecking my brain, trying to inject, with a breaking heart, a little hope and optimism, I find by accident, a reference by Hooper and Williams, to something I wrote a long time ago :
“In a paper dated 8th March 2008 entitled “The Year of No Compromise” Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following
“This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK”.
….Crowhurst’s summary exactly captures the situation in the UK:
do not investigate ME patients
do not provide special facilities for ME patients other than psychiatric clinics
do not offer special training to doctors about the disorder
do not offer appropriate medical care for ME patients
do not offer respite care for ME patients
do not offer State benefits for those with ME do not conduct biomedical research into the disorder
the wreaking of havoc in the lives of ME patients and their families by the arrogant pursuit of a psychiatric construct of the disorder.
the attempts to subvert the international classification of this disorder from neurological to behavioural
the propagation of untruths and falsehoods about the disorder
the building of affiliations with corporate industry
the insidious infiltration of all the major institutions
the denigration of those with ME
the attempt to make "ME" disappear in a sea of chronic fatigue
the refusal to see or acknowledge the multiplicity of symptoms
the ignoring and misinterpretation of the biomedical evidence
the suppression of published findings
the vested interests
the arresting and sectioning of protestors
the silencing of ME patients, through being given a psychiatric label
the suppression of dissent
the labelling of ME patients as the "undeserving sick", as malingerers
the forcible removal of sick children and adults from their homes.
Well, that is progress ! However, as I write in the latest 25% Group Christmas Magazine :
"I turn to the lonely wall and I am thinking to myself, when are the campaign groups going to face-up to the fact that whatever we throw at the Psyches, the NICE’s... , they just absorb with a great big belly laugh. Rant and rave all you like on the internet and they agree with you, with a sly twinkle. Your concerns, your outrage, your petitions they will even sign up to, while slapping you on the back, with a dagger in their hand. "
Even so - as Baker's extraordinary admission last year indicates, we ARE making progress. There IS reason for hope.
But we HAVE to discover a new radicalism !! It has been a long, long road. Many of us are beyond worn-out, it is such a struggle surviving.
Could this year be an ME Spring ? Alone among all the Charities that have sold us out, the 25% Group is taking a stand this year, inviting patients to share their experience of ME, so that "we can wake up the powers that be to the reality of patient experience."
Yes, yes !!! Patient experience is EXACTLY what is required, especially in this Election Year in the UK; exposing the reality of what is happening as opposed to the psychiatric rhetoric is a long overdue. Why has this initiative not happened sooner ??
M.E. and exercise – when will they ever learn? editorial in our winter 2014 ‘ME Essential’ magazine
Our chairman, Neil Riley, wrote this in the winter 2014 edition of our membership magazine, ‘ME Essential’.
My sister Kate lives in Australia. In August she came to Europe with her husband for a holiday. Their first port of call was Amsterdam.
I was too ill to meet her so my daughter, Rachel, went and took along her IPad. And so it was that on a cold, wet Saturday morning, Kate and I had a “FaceTime” video linkup as she sat in an Amsterdam coffee house whilst I was on the sofa at home.
I said I was so sorry that I could not make it to Holland to see her but explained that I was too ill with my ME. “Oh” she said, “you need to try that Graded Exercise therapy, it was in the newspaper the other day. It can cure you, you know”.
There was a stunned silence here and a gasp from my daughter Rachel in Amsterdam. What could I say? How do you explain to your sister, whom you imagine after all these years, would know about ME, that such a therapy was much more likely to make me worse than better.
I had to end the” FaceTime” link. I then felt the tears trickling down my face. “How could she”, I thought, doesn’t she know me?
I am not the only ME sufferer whose nearest and dearest have doubted them. It is heart-breaking. Only those who live with us each day or who have taken the trouble to understand what this illness is, can see what our life really is like.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death, yet we are treated as though we just lack the will to exercise and pick up our bed and walk. The lack of recognition of the seriousness of our illness is a blight on the medical profession.
This is a powerful message that we must get across. Not only to our nearest and dearest but to the world at large.
Exercise Intolerance Quotes
“The whole idea that you can take a disease like this and exercise your way to health is foolishness, it’s insane.”
PAUL CHENEY, M.D., Ph.D.
"Those physicians and researchers who are familiar with the disease of Myalgic Encephalomyelitis (M.E.) are in agreement that activity or exercise can lead to a severe relapse.
How to engage in desired or necessary activities in a way that does not lead to a crash thus is an important topic for those with the disease.
Following are more than two dozen comments from experts in M.E. on this topic.
Except where indicated otherwise, the quotes were supplied directly by the named individuals for this collection (in some cases a few years ago).
For those who like the good old traditional style hymns and choruses, this new double CD by Peter Jackson and friends will make enjoyable listening, with Peter accompanying on the piano the clear Scottish singing. As you listen to his playing, you would certainly never know that Peter is blind!
As he writes on the album cover -
I've always been a fairly ambitious person, but with advancing years, ambitions began to retreat: yet one remained obstinate and unsatisfied. In my travels, I had mentioned it to quite a number of churches who, for the most part, thought very favourably of this remaining ambition – to put on CD many of the choruses that we loved to sing in churches, in rallies, and around the piano in times long past.
I wondered whether this ambition would ever be fulfilled, and then came a communication from my colleagues in Fraserburgh who shared this ambition with me. This double CD album is the result, and I am for ever indebted to these wonderful people.
Many years ago, the young people sang the same choruses as the older folk, and then came the division, alas, largely brought about by music. Is it too much that these discs could somehow bridge the gap once more? And even if it is, we present these songs to the following generation, and trust that God will make them as much of a blessing to you as they were to us.
You can find the lyrics and track listing for "These We Have Loved" by clicking here.
For other items that Peter has produced, click here.
The Hooker/Wakefield/Moody Complaint - "The Hammer Falls!"
Dr. Brian Hooker, Dr. Andrew Wakefield, and attorney James Moody announced today they have sent a complaint by Federal Express to Dr. Harold Jaffe, Associate Director for Science at the Centers for Disease Control and Prevention, as well as Dr. Don Wright, Acting Director of the Office of Research Integrity at the Department of Health and Human Services, claiming research misconduct in the 2004 paper, "Age at First Measles-Mumps-Rubella Vaccination in Children with Autism and School-Matched Control Subjects: A Population-Based Study in Metropolitan Atlanta," which was subsequently published in the journal, Pediatrics.
The allegations are horrifying, not just for the millions of families who deal with autism on a daily basis, but for the picture it paints of a government agency, the Centers for Disease Control and Prevention (CDC), devoid of any shred of scientific integrity or what we once used to call "honor" in this country.
If these claims are shown to be true, we will be looking at nothing less than the greatest crime committed in the history of our republic, and a dark page in science which will be remembered for centuries to come.
In 2001, a group at the CDC, headed by Dr. Frank DeStefano, and including Dr. William Thompson, Dr. Marshalyn Yeargin-Allsopp, Dr. Tanya Karapurkar Bhasin, and Dr. Coleen Boyle planned to test the hypothesis that the earlier administration of the measles-mumps-rubella (MMR) shot was linked to an increase in autism rates. This research was prompted by the work of Dr. Wakefield and his colleagues, suggesting a link between autism and MMR shots, and his call for additional research to answer the question. The CDC scientists came up with that plan and recorded it in a document dated September 5, 2001, but did not follow it because of troubling findings among certain groups.
When scientists set out to test a hypothesis they come up with a research plan. That plan is supposed to be followed, and if for some reason it is not, there must be an explanation of why not. It is one of the basic tenets in science. You show EVERYTHING. You do not CONCEAL DATA. If there is a hell for scientists, this is the sin which sends you to the very lowest regions.
In the eighteenth century, the attorney William Murray, in a case which sought to outlaw slavery in England stated it succintly, "Let justice be done, though the heavens may fall." With apologies to William Murray, a research plan in science should come with a similar warning, "Let science be done, though the heavens may fall" (or public health and pharmaceutical company profits be thrown into chaos.)
Two specific groups were the subject of this concealment: African-American males, and a group the CDC termed "isolated autism" (children with no co-morbid developmental disorder such as mental retardation, cerebral palsy, hearing or vision problems, epilepsy, or birth defect) or what the rest of the honest world would generally call "normally developing children."
For the African-American males, this was the increased risk of autism by earlier administration of the MMR vaccine:
-- MMR vaccination after 36 months - 1.0 risk of autism. (The rate of autism at that time.)
-- MMR vaccination prior to 36 months - 3.36 fold increase in the risk of autism.
For the "isolated autism" group (normally developing children), this was the increased risk of autism by earlier administration of the MMR vaccine:
MMR vaccination after 36 months - 1.00 risk of autism.
MMR vaccination prior to 36 months - 3.86 fold increase in the risk of autism.
In the data it was shown that the children at greatest risk in both subgroups were those children vaccinated by 18 months, demonstrating a clear trend that the earlier the MMR vaccination, the higher the risk of autism. The withholding of this information also impacted those seeking compensation for their vaccine-injured children in the National Vaccine Injury Compensation Program, or what the rest of the world would call "obstruction of justice." It's like a prosecutor failing to turn over a key piece of evidence which exonerates a murder suspect, then saying nothing when the defendant goes to the electric chair. But in this case, the alleged wrong wasn't against just one individual, but an entire generation of children and their families.
If these allegations are proven true, we will be looking at scientific misconduct of the very highest order. It is difficult to come up with words to describe such behavior. How can scientists committed to "public health" be so comfortable with concealing such important data? It seems we will need to come up with a new word to describe such conduct. Even tyrants and dictators who kill and main millions claim to commit their heinous acts in the name of their people, their clan, an ideology, or their family. What we have here is a willingness to betray the entire human race.
Perhaps the words of the conspirators themselves are what we should place on their tombstones, or the historical account of them which will be left for future generations to read, and to consider when their courage falters in the face of troubling findings. The statement of Dr. William Thompson on the concealment of data about the effect on African-American males might be one that we include:
I regret that my co-authors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.
Maybe we don't need to invent new words. Those who read such accounts in the future will know exactly how much these scientists were committed to the "public health."
Today we can announce the dates of our 2015 Biomedical Research Colloquium and international ME Conference.
The Biomedical Research into ME Colloquium 5 (BRMEC5) will now take place over two days from 27th-28th May 2015.
The date for IIMEC10 –The 10th Invest in ME International ME Conference 2015 – will be 29th May 2015.
Both events will be in London.
With support from our colleagues in the European ME Alliance we will build on the international collaboration which has been facilitated by the conferences and colloquiums in recent years and which is the way forward for ME research.
It is encouraging to see our Colloquium gaining in credibility every year.
Last year almost 50 researchers from nine countries attended the BRMEC4 Colloquium.
We will continue try to bring in new researchers from outside the ME field to enhance the knowledge and ideas – something we have been doing from our first researchers meeting four years ago.
A distinct microsite for the conference events will be available shortly.
Invest in ME (Research) would like to thank our European ME Alliance Sweden colleagues at RME for supporting the conference already with a donation toward the costs of the conference.
International ME Conferences
The Invest in ME International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis.
Invest in ME began the conferences in 2006 and they are now an annual event in May. The conferences attract some of the most renowned speakers from all over the world and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME and enable an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities.
The conferences and, later, the Colloquiums have been generating new research and opportunities for years. The charity has now put in place the key building blocks to take ME research into this century with high-quality biomedical research in world class organisations being performed by some of the best researchers.
Our conferences have been facilitating discussions and sharing of information between patients, researchers and clinicians for almost 10 years.
International Biomedical Research into ME Colloquiums
The Invest in ME International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. We now have a basis for creating a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
Use the link here to see reviews of all of the IiME conferences and colloquiums.
Massive vaccine cover-up confirmed: Secret documents prove vaccines cause autism
(NaturalNews) The ongoing debate over whether or not vaccines cause autism would probably take on an entirely different tone if key information that has been mostly censored from the public was fully brought to light. Hidden documents that have been locked away for more than two decades reveal that the MMR vaccine for measles, mumps and rubella does cause autism, and regulators, drug executives and various others have known about this for a long time.
A Freedom of Information Act (FOIA) request filed in the UK has forced the Department of Health to release confidential documents outlining the details of MMR's initial approval back in the 1980s. These documents reveal that GlaxoSmithKline (GSK), the manufacturer of the MMR vaccine Pluserix, knew that there were problems with the vaccine causing a high rate of adverse events in children. Among these were encephalitis and other conditions associated with autism.
Concerned that the British government was withholding information about MMR's dangers from the public, the FOIA request was filed in response to the growing number of vaccinated children who were coming down with debilitating gut problems, brain damage and other symptoms believed to be associated with MMR. As it turns out, these suspicions are now validated.
"We have compensated cases in which children exhibited an encephalopathy, or general brain disease," admitted Tina Cheatham, Senior Advisor to the Administrator of the Health Resources and Services Administration of the U.S. Department of Health and Human Services (HHS), in an email to CBS News' Sharyl Attkisson. "Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures."
CDC, Pediatrics, US government and Merck all admit MMR vaccine causes autism
This admission is huge, as encephalopathy following vaccination is a known trigger of autistic symptoms, and something that the confidential documents from the UK also admit. GSK, the British government and various other players all kept this information under wraps, even after brave souls like Dr. Andrew Wakefield came forward publicly with data linking the MMR vaccine to autism-related health outcomes.
Reading between the lines, health authorities have, in fact, linked MMR to autism -- but they won't come right out and say it. Rubella, for instance, the German measles component of MMR, has been known to be a cause of autism since the 1960s. The U.S. Centers for Disease Control and Prevention (CDC) has admitted this publicly, as has the National Immunization Program (now the National Center for Immunization and Respiratory Diseases). Even Merck & Co. a major manufacturer of MMR vaccines, has admitted that vaccines in general can cause autism.
"[R]ubella (congenital rubella syndrome) is one of the few proven causes of autism," stated Walter A. Orenstein, M.D., former Assistant Surgeon General and Director of the National Immunization Program, in a 2002 letter to the UK's Chief Medical Officer.
"[R]ubella virus is one of the few known causes of autism," explained the CDC on its "FAQs (frequently asked questions) about MMR Vaccine & Autism" page, which has since been removed from public view. It is still available in some web archives.
Dr. Julie Gerberding, M.D., M.P.H., the current President of Merck's Vaccines Division, is also on record as admitting that people with a predisposition to mitochondrial dysfunction can develop autism following vaccination. A minimum of 20 percent of vaccine-induced autism cases are associated with mitochondrial dysfunction.
"Now, we all know that vaccines can occasionally cause fevers in kids," stated Dr. Gerberding back in 2008 during a segment on House Call with Dr. Sanjay Gupta titled "Unraveling the Mystery of Autism."
"So if a child was immunized, got a fever, had other complications from the vaccines. And if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism."
For more, visit:
Secret British MMR Vaccine Files Forced Open By Legal Action
Invest in ME are pleased to announce that our initial research fund target objective of £350,000 has been reached.
In the weeks following the Invest in ME Conference 2013 events in London the charity announced its intention to initiate a UK clinical trial of rituximab for ME in cooperation with UCL. After discussions with our advisor, professor Jonathan Edwards and the UCL research team under Dr Jo Cambridge, the charity organised a visit to Bergen by Professor Edwards to discuss with the Norwegian researchers Professor Mella and Dr Fluge. For the last year Invest in ME and our supporters have been raising awareness of the trial and raising funds.
Now, thanks to patients with ME and their families and friends - and with enormous and generous help from a foundation's pledge in memory of Roger Hendrie - the Invest in ME/UCL clinical trial project clinical has reached the initial target of £350,000.
This is a truly amazing effort for which so many can deservedly congratulate themselves.
We again thank our supporters who have done so much to change things (see earlier tribute to our supporters - an international event).
We continue our efforts to raise the further funds for a contingency research fund as the preliminary B-cell study which is now underway may result in changes to the trial.
We thank all those who are supporting this trial and we hope for continued support.
Invest in ME and its supporters have achieved this by themselves.
One event can change everything - one small charity one BIG Cause.
Click here to see/download our posters for the IIME/UCL rituximab trial.
Breaking News: Chemical Changes in Immune Cell DNA from ME/CFS Patients
We are pleased to announce the first study to report epigenetic modifications throughout the genome in female ME/CFS patients compared to a matched sample of healthy controls. This research conducted in partnership and funded by the Solve ME/CFS Initiative (SMCI) was published today in the high impact and open access journal PLOS ONE (http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0104757).
The Solve ME/CFS Initiative launched our Research Institute Without Walls in 2010 and Dr. Patrick McGowan was one of our first grantees to use this innovative infrastructure. Together with his graduate student, Will de Vega and SMCI’s Scientific Director, Suzanne D. Vernon, they found evidence of distinct epigenetic profiles in immune and other physiologically relevant genes in a selected group of female ME/CFS patients. Will de Vega, who performed much of the work, is a PhD candidate in the department of Cell and Systems Biology at the University of Toronto. His thesis research concerns how environmental factors and ME/CFS impact immunological processes, and their effects on clinically relevant phenotypes.
Epigenetic modifications affect the way genes are turned on or off without changing the inherited gene sequences. “Knowledge about the epigenetics of ME/CFS could potentially lead to alternative treatment options for sufferers, from targeted lifestyle interventions to new pharmacological treatments”, notes McGowan. There were many epigenetic modifications in and around immune genes that affect the way these genes are regulated and expressed. These types of changes would be expected to affect immune cell function in ME/CFS patients. “This is the first in a series of exciting results coming from McGowan’s lab at the University of Toronto”, says Suzanne D. Vernon. “By understanding these epigenetic differences in the immune cells of ME/CFS patients, we can begin to decipher the molecular mechanisms of the immune dysfunction that we suspect is at the root of ME/CFS”.
McGowan started this ME/CFS epigenetic research in 2012. His quick success is a testament to the power of patient-centered research approach used by the Solve ME/CFS Initiative. “Our study would not have been possible without the funding provided by the Solve ME/CFS Initiative, patient samples from the SolveCFS BioBank, and the collaborative support of the Initiative’s scientific director Dr. Suzanne D. Vernon” says McGowan.
The Solve ME/CFS Initiative will continue to partner with McGowan and his team at the University of Toronto to further this exciting work of epigenetics and ME/CFS. This field of research holds promise for identification of diagnostic biomarkers and potential treatment and interventions for ME/CFS. For right now it is further demonstration of the indisputable biological basis of ME/CFS.
Today is severe ME Awareness Day, dedicated to those who suffer the worst effects of Myalgic Encephalomyelitis. Naomi Whittingham describes life with severe ME
By Naomi Whittingham
9:58AM BST 08 Aug 2014
Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation.
I have had ME since the age of twelve, after catching a routine virus from which I never recovered. Within months I was unable to move, speak or open my eyes. I had to be spoonfed. Constant, agonising headaches forced me to lie in a dark and silent room. I was so ill that my family and doctor feared I could die at any moment.
ME affects around 250,000 people in the UK, with 25% so severely affected that they are house or bed bound. It is now widely recognised as a neurological condition although some doctors still mistakenly believe the cause to be psychological, or that it can be cured by exercise. ME involves every bodily system and symptoms include flu-like malaise, severe pain, muscle weakness, cognitive dysfunction and acute sensitivity to sensory stimulation.
After spending my early teenage years in a death-like state, I began to slowly improve. At 37, I remain in a wheelchair most of the time and dependent on full-time care from my mother, now 63, but I consider myself fortunate. If you met me during a better spell in the day, you might not realise there was much wrong with me. You wouldn't see the collapse into bed afterwards; the desperate need to lie in silence to prevent an escalation of symptoms such as pain, muscle jerking and vomiting.
In the twenty-five years of my illness I have watched my peers become teenagers and then adults. My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up. I have had to re-build self-belief from the shattering effects of having a misunderstood illness. It is destroying enough to experience the collapse of every bodily system; it brings one close to ruin when the cause is suggested as lack of motivation or a wish to escape life.
I have never driven a car or made a journey unaccompanied; I have never had a job or a boyfriend or a home of my own. I will never have the children I would love. For many women this last would be a devastating blow. Swamped by so many other losses, I barely register it.
Chronic illness is a bereavement: a lengthy grieving for shattered dreams. Despite this, I am not a tragic figure. Decades of intense suffering have given me a deep appreciation of life, of the simple pleasure of a sunset or spring flowers. I have a wide network of friends with ME and those of us who are well enough communicate through email and Facebook.
Recently someone asked me what I would do if I were well for a day. The possibilities for that one, cherished day not confined to bed or a wheelchair are too numerous to comprehend. Getting out of bed unaided, stepping out into the garden, making a cup of tea, styling my hair, shopping, going to the sea for the first time in years: basic, spontaneous activities which most people take for granted.
For me and thousands of others locked in this prison, the only prospect of release lies in quality biomedical research, of which there is far too little. There are promising developments in the study of viruses and immune abnormalities, and the hope of identifying diagnostic biomarkers and eventually drug treatments. But lack of funding means that progress is slow and in the meantime lives are wasted.
I will never get my youth back; but progress in understanding ME is urgently needed, before future generations lose theirs.
Voices from the Shadows, an award-winning documentary, tells the story of several severe ME sufferers, including Naomi and Sophia Mirza, who died aged 32. www.voicesfromtheshadowsfilm.co.uk
Invest in ME contacted Llewellyn King to ask for permission to republish this article – as it chimes so well with the views of the charity regarding progress, obstructions to progress, and the need to begin sowing the seeds of change.
Llewellyn King is executive producer and host of “White House Chronicle” on PBS, a columnist for the Hearst-New York Times Syndicate and a commentator on SiriusXM Satellite Radio.
I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease.
The manifesto states what I think should be done now.
And “now” is an important word.
There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space.
The gardener, looking at his enfeebled employer, swallowed and said,
“But, sir, an oak tree takes a hundred years to grow.”
“Then you'd better plant it now, hadn't you?” said Churchill.
During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes -- on his paperwork for staff that read, “Action This Day.”
One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action.
The second was how stingy public and private funding for research was then and is now.
I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.
One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million.
The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year.
I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in a year-out for nuclear fusion research -- and I see nothing wrong with that.
But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable.
"Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders."
To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to wilful neglect; an abrogation of the high purposes of Hippocrates' calling.
Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders.
These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark.
The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops.
These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then.
Science needs certainty of support, both political and financial, to triumph.
The key is sustained funding; a splash here and a dash there just won't do -- it won't do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding.
ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it. It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowd funding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg.
Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science.
If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics.
We almost humbled polio, and developed powerful drug therapies for AIDS.
We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration.
Why not for ME/CFS? Why not?
There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates.
The voices need to be heard widely, need to be channelled and need to be focused. A million points of light won't do it. A laser, a great beam, will do it.
There are three principal reasons why these voices are not heard by those who need to hear them:
1 ME/CFS is a hard story for the media to grasp.
2. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson's Disease.
3 ME/CFS has no presence in Washington.
Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take.
To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.
Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favourite restaurant of the powerful, and those who think they are powerful.
If your children attend one of the power schools, like St. Alban's or Sidwell Friends, contacts can be made and deals can be done at the events.
A friend of mine enlisted President Bill Clinton's help for a cause because their children went to the same school.
It may strike you as banal, but it is the Washington political game.
Learn to play it.
Washington is a society of people who are impressed with each other.
It is important to be known. If you are invited to the annual White House
Correspondents' Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy.
Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system.
A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money.
The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs.
Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government.
The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal.
But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles.
Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it.
That currency is information.
Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker.
The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial.
Research funding, above all, needs to be sustained at predictable levels.
The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development.
How much ME/CFS will need and for how long is an existential question?
Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS.
In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be.
I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.
I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease's funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others -- have in Washingon and the nation.
If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.
ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it.
That Churchill oak needs to be planted now, and in sight of the U.S. Capitol.