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Tuesday, 30th August 2011

Mind the gap

Simon Wessely 4:15pm

As a break from Westminster, readers might enjoy this article, from the latest issue of the magazine, on the efforts to undertand ME or Chronic Fatigue Syndrome.

In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queen’s Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation — muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion — yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). ‘I can’t understand why they think it’s an encephalomyelitis,’ one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: ‘Dear Simon, please see this patient. There is nothing wrong with her.’

But there was. The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS). At that time, patients at ‘the Square’, as the hospital was called, were usually told that the only thing they could do was to rest and either hope that the condition would go away or that doctors would come up with a magic bullet.

I started, with a group of other doctors, to try to do better. Over the next two decades, we developed two different approaches to rehabilitating CFS patients, based on the idea that even if we didn’t know what caused the illness, we could still help patients manage their symptoms and regain control of their lives. Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked. In 2007, some 20 years after we started, the National Institute for Health and Clinical Excellence approved both treatments as safe and effective.

I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers. We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.

Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice’. One blogger wrote a post addressed to me in which he called me ‘the born personal physician of Heydrich, Goebbels or Hitler’. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.

OK, let’s keep a sense of proportion. It’s only a small number of people who do this. I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.

For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.

My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one. But three things here anger me. First, the repeated claim that we don’t think our patients have an illness. They do, and to say otherwise is insulting.

Second, even if you don’t think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queen’s Square are the best we have. They are by no means a cure — but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinson’s, schizophrenia and many more. No one would advocate leaving them without any prospect of treatment.

And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.

It’s not so much the threatening emails and blogs that rile. It’s the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues — the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word ‘not’ deleted, for instance. And transcripts of our speeches are sometimes altered so that ‘yes’ becomes ‘no’.

How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers — who did believe that many illnesses were ‘all in the mind’ — led to an increasing separation of the two disciplines.

By and large, the current generation of psychiatrists accept that many disorders — autism, schizophrenia, bipolar, OCD, Alzheimer’s and others — are disorders of brain function. Yet the division between neurology and psychiatry remains. It is almost impossible, for example, to train in both fields in this country, unlike in Germany. A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. ‘If we could identify the problem with the brain, we could tell patients it’s not all in their heads,’ he said, without apparent irony.

We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on with our jobs — improving the treatment of patients and their illnesses.

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Frank P

August 30th, 2011 4:46pm Report this comment

Ohhh ...FFS!

Ian Pemberton

August 30th, 2011 5:13pm Report this comment

Simon

An interesting piece. I suspect that the artificial split of mind and body in modern medicine goes back further than Freud to Descartes - he laid the foundations to this false view. Keep up the good work and good luck with the detractors - no doubt a few will post here.

James W

August 30th, 2011 5:46pm Report this comment

Frank P - there are a set of buttons marked "Previous", "Next" and "Back to Coffee House". It's easier to click on these than submitting such a short dismissive response.

Open your mind and/or engage with the article.

Quickly shutting down any debate that falls outside your own specfic interests and opinions is such a tragic waste.

London Calling

August 30th, 2011 6:12pm Report this comment

I apologize if my comment is repeated...only your comment box did not close properly..:)

Frank P

August 30th, 2011 6:31pm Report this comment

James W
Quackery squared! Does that help?
How many more parasites can we afford sucking on the resources of the NHS? I thought the idea was that there would be a culling of waste, not new ideas for extending it exponentially.

Btw, you express your thoughts your way, I'll stick to my shorthand, iydm. No doubt you'll diagnose that as Frank P Syndrome. Perhaps you'll work on a new medicine for it with your Pharma friends.

Louisa

August 30th, 2011 6:53pm Report this comment

As usual, more charm from Frank P. You are obviously in need of treatment yourself Frank but not the variety described above.

London Calling

August 30th, 2011 7:18pm Report this comment

My original is not getting through...I'll try again later...the copy and pasting it into your comment box has caused your comments box to block it for some reason...:)

It started with ...

My Doctor informed me I had a slit personality, so I asked him if I could have a third opinion on that...;0

Jeremy

August 30th, 2011 7:23pm Report this comment

I think it ought to be remembered that Freud originally trained - and practised - as a neurologist.

Esther Siebert

August 30th, 2011 8:18pm Report this comment

I deeply regret, as do many in my ME/CFS support group in California, the attacks and death threats being made by a radical fringe of patients. They distract from the real issues of finding treatment for those of us suffering for so long. The disrespect and ridicule we've had to endure for so long is being confused with efforts to find some means of helping us cope. Still I wonder if any research is being done in England to find the biological cause/s and treatments of our illness. All I hear from England is about graded exercise and cognitive behavioral therapy.

I've been ill for 25 years now and have tried graded exercise alone and with physical therapists multiple times. It feels so good to move my body but because it very quickly results in a relapse, I have not been able to sustain graded exercise. The method implies that we are simply deconditioned and if we start exercising slowly enough, we will be able to build up stamina and improve or recover. Not true for me or any of the others I know.

Now however, Dr. Nancy Klimas of the University of Miama, who is a clinician and researcher who treats half AIDS patients and half ME/CFS patients, has proposed a system of exercise for us that prevents relapse and considers our physical state in her prescription. I invite patients in England to look into this system as a replacement for graded exercise to address our deconditioning from years of inactivity. I believe research here has shown that our physical reaction to exercise differs from that of normal sedentary people.

For those of us suffering from this often totally disabling illness, we do need help with depression, anxiety and general hopelessness. The difficulty lies in finding meaning and peace despite a lifestyle filled with disappointment and loss. Not easy at all. I believe CBT might be helpful in re-framing our thinking and thereby improving our emotional health. But probably equally important is logotherapy, the psychology of meaning developed by Victor Frankl. If you feel that your life has no meaning, that you are in-valid and have no purpose, no part of CBT will be of help. First you need a reason to live.

What I've found is that no matter how sick I am, there are ways I can be of service to others. And that a life lived only for myself is not worth living. These realizations came to me through working the 12 steps of the anonymous programs.

Psychiatric drugs have been helpful to me and my psychiatrist has recommended a drug, Cymbalta, which helps Fibromyalgia patients, to try for depression and anxiety. Unfortunately it has no effect on my energy level so far. I no longer care whether my illness is psychiatric or not; if you believe it is psychiatric in origin, find a cure for it! I'll embrace it! Even if it doesn't explain why my illness began with a 10-month Epstein-Barr virus infection. Virus'
can infect the brain too, after all.

Finally, we all need to note what Dr. Klimas said in the New York Times: I'd rather have AIDS in 2009 than Chronic Fatigue Syndrome. My CFS patients are much sicker than my AIDS patients.

We patients need to remember that shocking statement to validate the reality of our situation and illness and put aside the self-doubt brought about by years of dismissal and ridicule.

But we need not reject out of hand any sincere help being offered by psychiatrists, neurologists, therapists. Truly, we don't know from whence our help shall come.

Esther Siebert

Bob

August 30th, 2011 8:29pm Report this comment

Yes, I agree Pemberton, there is no place for those who think the mind can cause anything. There is only the brain.

ME does of course include many other symptoms and signs that cannot ordinate or be derived from the brain.

It is time the Wessely School were left behind so that science can progress on what is already an accepted neurological disease with a vast body of biomedical research showing the underlying abnormalities in every system of the body.

Scott Wilson

August 30th, 2011 8:29pm Report this comment

As a patient who does think that Simon Wessely's work has been harmful for patients, I want to make it quite clear that it is not because he is a psychiatrist, or that I have any concerns about the stigma of mental health, but because of the paternalistic and often incompetent approach to CFS/ME that he has taken. His early work exaggerating the link between depression and disability for patients, and downplaying the role of viral triggers, set the scene for a decade of quackery which has continued long after Wessely himself has changed his own mind.

If doctors are to expand their own purview to include the psychosocial factors of illness, then we need to also expand the regulation and over-sight which they face. Power without responsibility or accountability often leads to the sort of resentment and distrust which we have seen develop with CFS/ME.

CFS/ME patients have been used as guinea pigs for a biopsychosocial approach to medicine - given the animosity it has resulted in, I think that we need to recognise this experiment has now failed.

Frank P

August 30th, 2011 8:34pm Report this comment

And another thing

I loved the last line of the post: "you can subscribe to the Spectator for just £1"

Obviously the post was truncated, the remainder of the last sentence was: "particularly if you are a patient of Simon Wessely."

And James W - are you his dad, his son or his brother?

Angela Kennedy

August 30th, 2011 8:42pm Report this comment

There has recently been a sustained and ongoing negative PR media campaign claiming ME/CFS sufferers and supporters are criminally harassing researchers. There are key problems with these articles/radio programmes:

1. The allegations themselves are unsafe. For example, an anonymous comment that "you will all pay" is deemed a 'death threat', when no threat is actually made, and the comment appears to denote instead a prediction of being accountable. Ironically, David Cameron used the phrase "you will pay" towards rioters recently, without it being deemed a 'death threat'.

2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.) as 'malicious harassment', or 'abuse' or 'intimidation’. Legitimate actions are juxtaposed with alleged acts of criminal harassment to falsely construct non- criminal parties as harassers.

3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed 'extremist', even ‘criminal‘, but no chance is given to such objectors to express their position.

But why DO patients object to psychogenic explanations for their illnesses? They do firstly because psychogenic explanations for somatic illnesses are often implausible, and the result of fallacious medical reasoning: a lack of bio-medical knowledge, on an individual or disciplinary level, gives rise to often increasingly absurd and confused metaphysical explanations (beliefs, lies, delusions, the awesome 'Carrie'-like kinetic power of the mind over the body to nth degrees) by default. This leads to psychogenic dismissal of serious physical illness, so that patients' lives and health (and quality of life) are endangered. Psychogenic misdiagnoses have led to tragic, premature deaths. One example in the medical literature is a woman with Creuztfeld-Jakob disease, who choked to death because doctors thought her illness was psychogenic: her having had difficulties with coming out as lesbian, and a difficulty in finding organic signs (eventually found, but too late for the patient) leading to this fallacious conclusion.

Accompanying psychogenic dismissal of serious illness is the use of harmful treatments, such as incremental exercise regimes for people in cardiovascular and neurological failure (if you look at the medical literature this is a phenomenon related to ME/CFS, NOT caused by 'deconditioning'), or Cognitive Behavioural Therapy that blames the patient for 'thinking' themselves ill and not being able to recover.

On top of this, patients given psychogenic diagnoses are deemed, by medics and other health workers, other state institutions such as education and social security, communities, even families, as authors of their own misfortune, as moral deviants. This leads to contempt for patients from all directions and serious mistreatment, including, for example, but in no way limited to, the withholding of benefits for people in serious need.

So, a patient facing a psychogenic explanation, whether in a media campaign like in recent weeks, in an opinion piece from a young doctor, in a clinic, is facing a HIGH potential of misdiagnosis, with a HIGH potential for serious adverse effects of this. Rationality and self-preservation will inevitably lead to protestation from patients, though they may still find themselves, at least initially, reeling from such a whirlwind of absurdity from professionals they are exhorted to trust and defer to, and usually do.

As a supporter of the ME community (not a sufferer myself), while I condemn any ACTUAL acts of harassment and intimidation, I am nevertheless disgusted at the level of attack on and misrepresentation of sufferers these past few weeks in particular. That legitimate actions and public objections are being falsely characterised as 'harassment' is the most insidious part of this campaign.

M Walton

August 30th, 2011 8:45pm Report this comment

Oh dear oh dear. All those scientists working in bio-medical research into ME (such as gene signatures, immunological markers etc) must be really getting to you, Mr Wessely.

All the ones you say have given dipped a toe in and given up...funny how more and more bio-medical research, outside of any psychiatric framework are being published, and you have to start on a prolonged media defensive to sand-bag your intellectually impoverished castle. But don't worry - I'm sure you can keep blaming ME patients for their "illness beliefs" rather than enter into intellectual discussion with the scientists who oppose your neurological paradigms with real empirical research.

nasim marie jafry

August 30th, 2011 8:45pm Report this comment

Alas, it's not really about debate, James W, it's about criteria being wholly muddied and misused. Simon Wessely hijacked a neurological illness - ME - for reasons I will never truly understand - and remodelled it to suit his own (bio)psychosocial model, renaming it CFS in UK. He denied that ME existed, calling it ‘a belief that one has the illness ME’.

(Also, the terminology CFS when used in USA is what we know here as ME, it is confusing, but the USA is slowly adopting ME as the most apt name).

You can read the International Consensus Criteria of ME, published in Journal of Internal Medicine in July 2011, which expresses great concern about the criteria used by the Wessely school.

http://www.meassociation.org.uk/?p=7173

Crucially, the people who respond to psychological interventions of CBT and graded exercise (GET) have a less complex, less disabling 'fatigue' syndrome as defined by Simon in early 90s - CFS. They do not have ME, the neuroimmune illness.

In 1984, I was in a neurology ward having a plasma exchange and immunosuppression for ME. I was 20 yrs old, my illness triggered by an enterovirus. The consultant neurologist who treated me was not in the least irritated, but I suspect he might be that Simon is so hotly in denial of a diagnosis of ME - just like he is in denial of the now 5000 papers on the biomedical aspects of ME. And denial of the 1969 WHO classification of ME as neurological. If Simon wants so desperately to be a neurologist, he really should not have specialised in psychiatry.

You can read more here on the government position that ME is neurological.
http://www.investinme.org/Article-704%20UK%20Government%20Position%20on%20ME.htm

This is what people with ME feel angry about: Simon Wessely – and his followers - have conflated two illnesses and caused absolute chaos. It’s that simple. We are not detractors, we are people whose lives have been broken by a dreadful illness. We only want to be diagnosed and treated by people qualified to do so, is that so wrong? I am relieved to have been seen by a neurologist, many years before Simon started changing the narrative.

Rich

August 30th, 2011 9:03pm Report this comment

There may be no specific markers for CFS/ME but many of us have many abnormalities in immune parameters, which can be measured. They are biochemical phenomena.
True, changes in immune function can also occur in e.g. depression and respond in some patients to anti-depressants. The mind/brain/body influence each other and psychological states can influence biology profoundly. But this should not lead to endorsement of simplistic psychological models which put ALL the emphasis on psychological causes and specifically, in the NHS, "false illness belief", the basis of most NHS treatment of fatigue state illness.
Mental illness should be appreciated in the light of psychiatry and neurology. Similarly physical expressed illness involving neurology may well have a psychiatric aspect. This is the case for e.g. lupus, MS, Parkinson's. If e.g. the brain is inflamed, or under the influence of noxious chemicals due to e.g. inflamation in other parts of the body, that is in a sense "mental". The brain is involved, there may well be psychiatric symptoms too. But the physical inflamatory state deserves investigation/treatment as a physical phenomenon. It is natural to allow that there may well be a primary physical cause and look for one. Even if the cause cannot be found,it is reasonable to treat such inflammation and its consequences, if possible, as a physical problem. Without denying that psychological states such as stress can also contribute to inflammatory states and may need treating too, it is entirely illegitimate is to claim for no good reason that the physical symptoms are caused soley by psychological states. That is an inversion of medicine and exactly what the "False illness belief" paradigm underlying CBT/GET as sole optionfor for ME sufferers represnts.

Derek Cantona

August 30th, 2011 9:55pm Report this comment

do you accept comments

Yvonne L

August 30th, 2011 10:22pm Report this comment

There are estimates of 250K people in the UK suffering from ME to viable degrees, 25% so severely they are bed-bound. SW has said that his clinic has treated in excess of 3000 patients; he has personally seen 1000. His recommended therapies are replicated in clinics throughout the UK, yet we seldom see letters from genuine ME patients thanking him for his work and their renewed health, or even from friends and family of those patients. We do, however, see letters from friends and families of sufferers who are crying out for effective treatment.

Jeremy

August 30th, 2011 10:36pm Report this comment

My point being that Freud always considered himself to be a man of science, and I am not at all sure that he would have regarded the division between the psyche and the brain to be as absolute as this article suggests.

Gerwyn

August 30th, 2011 10:52pm Report this comment

I did not know that an artificial split between the brain and the body existed in modern medicine.When did that happen?

Gerwyn

August 30th, 2011 10:58pm Report this comment

I think that it should be remembered that Freud falsified his case studies twisted data to fit his beliefs and that his theories are in direct conflict with modern neuroscienctific evidence.It should also be remembered that he was a cocaine addict

Occasional Ostrich

August 30th, 2011 11:15pm Report this comment

@London Calling 7:18pm

"a slit personality"

Obviously a suitable case for treatment.

papagray

August 30th, 2011 11:24pm Report this comment

hi folks, i am not qualified to really comment only the grounds i have been diagnoised with ME, from what i understand catagorising ME as CFS makes it a mental illness, hence invalidates any insurance you have..something which was adopted by the USA to save the bankers money i have been informed. reading the lines again i had bulber/spinal polio as a babay and no matter what drugs you give me it sends me to sleep now all after a fact i was given theholiday polio jab..i got ME..
its like looking through a fog, poor memeory, cannot spell anymore sorry tired..
but can someone stop bickering who is right and find a soloution for the problem.
if the person wants fame
GO ON THE X FACTOR

stop playing with peoples lives please

cambervanbrugh

August 30th, 2011 11:26pm Report this comment

Whatever ME and/or CFS actually is, it actually IS and it would be great if some serious ground was made re: getting to the bottom of both without all this strife and medical internecine warfare. My husband collapsed a couple of years ago with no warning and then spent the next two years coping with the most dire episodes of exhaustion, and he is a person with a motor on him, when healthy, believe me. After a plethora of worthless - and depressing - tests he has been left to fend for himself, gradually, he improves but it has taken months and the thing can and does reappear from time to time. Many friends and acquaintances have come forward to complain of just such a malaise: what, I wonder, is going on...?

celia joy

August 30th, 2011 11:27pm Report this comment

there is gene research to show immune system viral infection and much more physical signs of illness not mental health. see johnathon kerr research however this was blocked by the medical research council. imagine where we would be know if this research went ahead

not only that but many other researchers who have shown problems with heart and many other body systems inclucing blood flow to brain are always turned down for funding almost no funding ever for these researchers. see me research uk who did a study showing the above and also that 40 per cent of m.e. patients were wrongly diagnosed and had other serious and treatable illness.

26 medical experts with a combined 400 y3a4s or expeiene of treating m.e. patients from 13 countries have produced a document full of medical science and medical research papers

http://www.meassociation.org.uk/?p=7173

for those with enquiring minds wondering what the real story is prof malcolm hooper states it very well here.
http://www.meactionuk.org.uk/Response-to-Observer-article.html

the fact is that these treatments simon offers have left many housebound and suffering a life time of disability and have even lead to fatal outcomes

2trueblue

August 30th, 2011 11:43pm Report this comment

Most people who have ME/CFS are never referred to a specialist. They are treated by their GP and we all know that this is a question of luck. I had a very good GP and also with medical knowledge myself went to a lot of alternative people. It was the best move I made. There is no easy way to diagnose ME/CFS but it is certainly not a psychological illness. I don't care what people call it, I have been extremely lucky with the people I was treated by and whenever I have a relapse find I can deal with it. I am an energetic person and when it happened it was galvanising, and I had a get GP who was bright and did not offer me something for depression. I would hate to be in the same position today where my current GP looks at his computer and never even takes my pulse! I don't care what he thinks, he is just a modern GP who relies on his computer and knows nothing about patient treatment. I also don't care what anybody else thinks, I'll live.

Anon

August 30th, 2011 11:53pm Report this comment

Yvonne: there are many patients (like me) who have fully recovered from CFS after using psychological treatments. We generally don't publicise the fact because there are too many nutbars out there who harrass us when we post anything. Mostly we just get on with our lives.

Jeremy

August 31st, 2011 1:05am Report this comment

Gerwyn:

"I think that it should be remembered that Freud falsified his case studies twisted data to fit his beliefs and that his theories are in direct conflict with modern neuroscienctific evidence. It should also be remembered that he was a cocaine addict."

Freud also worked variously as a draper's assistant, an arms dealer and a black and white minstrel, before going on to found the popular beat group, Nirvana.

Susan Wenger

August 31st, 2011 1:09am Report this comment

"Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked."

The real question is, on whom did they work?

As others above have mentioned, the disease renamed "chronic fatigue syndrome" was given a definition so broad as to be a wastebasket diagnosis. There may be a number of people who have seen modest improvements on CBT and GET. Our skepticism is that those patients actually had ME to begin with.

I would be interested to know what you think of the new International Consensus Criteria for diagnosing ME. One of the things the ICC specifies is that sufferers must experience post-exertional neuroimmune exhaustion, in which symptoms become worse with even minimal exertion. Do you believe that these specific patients would benefit from graded exercise therapy?

James W

August 31st, 2011 9:01am Report this comment

@Frank P - I'm no relation to the author of this piece, I am not part of the medical industry and have zero knowledge of this topic whatsoever (hence I didn't comment on the article itself).

In fact I find the comments that argue against the article as interesting as the article itself.

I only responded to your comment because you rushed in with a pointless "Daily Mail" style rant trying to close down the debate before it even began. I thought that was a shame.

Sean Haffey

August 31st, 2011 9:17am Report this comment

My wife is the most active person I know - she can be quite exhausting just to watch.

Yet a little under 10 years ago, she suddenly started suffering extreme fatigue. For someone who needed 5 or 6 hours' sleep a night she deteriorated at one point to someone who slept for 23 hours a day. She couldn't climb the stairs.

She was extremely fortunate in having a supportive manager and company and over a period of several months regained 90% of her previous health.

Who knows what caused it? We don't. She was incredibly frustrated not to be able to get around but eventually recovered.

wisden

August 31st, 2011 9:23am Report this comment

Were patients in the PACE trial fully informed of the principal investigators' links with the insurance industry and the DWP, before they gave their consent to take part?

"PACE trial Conflicts of interest (extract)
PD White has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company). ... J Bavinton has undertaken paid work for the insurance industry. .... T Chalder has done consultancy work for insurance companies .... M Sharpe has done voluntary and paid consultancy work for government and for legal and insurance companies..."

"PACE trial Acknowledgments (extract)
The PACE trial was funded by the UK Medical Research Council (MRC G0200434), the Department of Health for England, the UK Department for Work and Pensions, and the Chief Scientist Office of the Scottish Government Health Directorates."

"There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical 'expert' in a field of
high controversy requires a different methodology of benefit assessment." www.erythos.com/gibsonenquiry

lborgia

August 31st, 2011 9:32am Report this comment

This has full permission to repost from Prof Hooper. It is at a tangent to the main thrust of the 'I'm Wessely It's all about me' original text but I'm sure it's relevant to the wider debate:

Permission to repost.

On the 18th of July, Professor Hooper sent a letter to the Secretary of State for Work and Pensions and to the Secretary of State for Health on the discrepancy between the departments' classifications of ME. This letter is already in the public domain:

http://www.meactionuk.org.uk/dwp_doh_classification.htm

To date he has received no response from the Secretary of State for Work and Pensions but has received a reply from the Department of Health. The following letter is Professor Hooper's response to that reply:

http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD

Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

Mr Adam Butler
Customer Service Centre
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS

28th August 2011

Your ref: TO00000632586

Dear Mr Butler

re: The major discrepancy between the Department of Health and the Department for Work and Pensions on the same medical issue

Thank you for your letter of 11th August 2011 sent in response to my letter of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at the Department for Work and Pensions that was copied to The Rt Hon Andrew Lansley MP, Secretary of State for Health, on whose behalf you replied.

I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not having been shown by Mr Duncan Smith from whose Department I have received no acknowledgement, so this letter will be copied to him.

In my letter I drew attention to a serious error in the Statutory Payments Manual (SPM 50605) used by decision-makers, namely the categorisation of ME as a mental health disorder.

In your reply you confirm that this error was the responsibility of the DWP: “You suggest that guidance used by decision-makers in the Department for Work and Pensions (DWP) is unsatisfactory. The DWP’s Health and Benefits Division was responsible for drafting the guidance”.

It is, of course, the case that Professor Peter White, a psychiatrist who works for the permanent health insurance industry, was and remains lead advisor on “CFS” to the DWP and, despite irrefutable evidence that he is incorrect, he is firmly committed to his belief that ME is a somatoform (mental) disorder and he advises the DWP accordingly.

Herein lies the major discrepancy between two Departments of State: whilst the DWP rejects the WHO ICD-10 classification of ME as a neurological disorder and follows Professor White’s beliefs that it is a mental disorder, the Department of Health nominally accepts the WHO ICD-10 classification of it as a neurological disorder.

There are in fact two related issues, one being the discrepancy between two Departments of State outlined above and the other relating specifically to the DoH, this being the failure of the DoH to comply with the 1995 mandate to observe the WHO-ICD-10 classification system (see below).

The first issue

To summarise (and reiterate) the position of both Departments of State and their previous public statements about the nature of ME:

1. the Department of Health accepted ME as an organic disease in 1987 (Hansard, HC 27th November 1987, column 353)

2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3) 2484/200), in his capacity as Parliamentary Under Secretary of State for Health, Stephen Dorrell MP set out the official view of the Department of Health on ME: referring to the Disability Handbook produced by the Disability Living Allowance Board, the Minister stated: “The Handbook recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised”

3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on public record confirming that “ME is established as a medical condition” when he addressed a meeting of the Leicestershire ME Group

4. not only the DoH but also the DWP recognises that ME is a physical disorder. In the British Library Current Awareness Topics Update for March 2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p; titles II and XVI; evaluating cases involving chronic fatigue syndrome (CFS). Fed Regist 1999 Apr 30;64(83);23380-4: “In accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling explains that, when it is accompanied by appropriate medical signs or laboratory findings, CFS is a medically determinable impairment that can be the basis for a finding of “disability”. This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures”

5. this was reported in the Disability Rights Bulletin, Summer 2000, in the following terms: “In assessing DLA higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. The Commissioner, in CDLA/2822/99, held that an award of the higher rate mobility component can be made on the basis of the physical element of the condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in the vast majority of claims, if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement”

6. on 18th September 2002, the Director of Communications at NICE issued a Communications Report which stated: “Following discussions with the Department of Health and other national agencies the Institute has adopted a new classification system that will be applied Institute-wide” (2.7.1.1); “The ICD classification has been used as a basis for the new Institute classification directed at the informed reader” (2.7.1.4); “ICD-10…classification codes are mandatory for use across England” (2.7.1.5)

7. ME has been included as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003

8. by letter dated 11th February 2004 to the Countess of Mar, the Parliamentary Under Secretary of State at the Department of Health, Lord Warner, confirmed that the DoH accepts the WHO classification of ME as a neurological disorder. That letter was placed by Lord Warner in the House library for access by all MPs.

9. ME has been included in the National Service Framework for long-term neurological condition since its inception in 2005

10. the DoH has confirmed on numerous occasions, many documented in Hansard, that the DoH itself and the UK Government accepts ME to be a neurological disorder, for example on 2nd June 2008 the then Parliamentary Under Secretary of State, Lord Darzi, was unequivocal: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition….I have acknowledged that CFS/ME is a neurological condition…the Government…have made it clear that… it is a neurological rather than a mental condition”

11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan from the Department of Health Customer Services Centre confirmed the following: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. (It is, of course, the case that Government officials such as yourself may use bogus names -- known as “office names” -- when writing to members of the public [“Civil servants use bogus names to sign official letters”; Roya Nikkhah; Sunday Telegraph; 20th June 2004], so the true authorship of both your own letter and that of Tim Morgan remains unconfirmed but must nonetheless be taken as authoritative documents).

You say in your letter: “As you may know, in 2007, NICE published Clinical Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and children, to advise the NHS on the treatment of CFS/ME in England and Wales”. The documentary evidence outlined above makes it all the more troubling that the NICE Guideline Development Group which produced CG53 expressly rejected the WHO classification of ME as a neurological disorder and voted to remove from its deliberations its initial acceptance of ME as an organic disorder, this being confirmed by patient representative Tanya Harrison in her letter of resignation dated 16th July 2007 from the GDG: “the final straw came when the group voted to remove that ME/CFS is a physical illness”, which reflects the beliefs and advice of Professor Peter White to the DWP.

Mindful of the above evidence, it will not be sufficient for you to reply to this current letter saying that this discrepancy between two Departments of State is a medical matter for the PCTs to address.

It is a policy issue and thus a matter for the two Secretaries of State themselves to address and resolve without further delay.

The WHO has classified ME as a neurological disorder since 1969 and ME cannot be taxonomically considered by the DWP or any other Department to be a somatoform disorder; that the DWP persists in doing so is all the more disturbing when, in another Department of State, the entire NHS is mandated to regard ME as a neurological disorder.

The second issue

Given that the NHS has been mandated since 1995 to implement the ICD-10 classifications, and given that “mandatory” means “obligatory, compulsory” and that a mandate is “an official or authoritative instruction or command”, not only the DWP but also the NHS has patently failed to comply with the 1995 mandate to implement ICD-10 classifications.

Influenced by the Wessely School (who act as advisors to other Government departments and to NICE as well as to the DWP), not only the Wessely School themselves but also many NHS neurologists are in breach of the 1995 mandate that pertains throughout the NHS: 84% of neurologists questioned stated that they do not believe ME exists as a neurological condition (J Psychsom Med 9th April 2010), despite the reported evidence of markers of severe ganglionitis having been found in the central nervous system in several post mortem samples.

In one particular case, that of 32 year-old Sophia Mirza who died in November 2005 (whose death certificate recorded that she died of [ME]CFS), examination of her spinal cord showed inflammatory changes affecting the dorsal root ganglia, which are the gateways for all sensations going to the brain through the spinal cord. These inflammatory changes affected 75% of Sophia’s spinal cord.

At the inquest held on 13th June 2006, one of the pathologists stated: “ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory because there was inflammation in the basal root ganglia”.

Dr O’Donovan (the neuropathologist who had examined the spinal cord) stated that ME “lies more in the realms of neurology than psychiatry, in my opinion”.

Given that NHS staff are mandated to use ICD-10 codes, I should be grateful if you would explain why such a medically unsustainable situation has been allowed by the DoH to remain unchallenged for the last 16 years, since there is a legal obligation for the DoH to provide accurate ICD data to the WHO.

Recently, 26 expert authors (from 13 countries) produced the International Consensus Criteria for ME (Carruthers B et al; J Int Med 20th July 2011) and they strongly advocate that ME be removed from the NICE CG53 definition of “CFS/ME”.

This should become a priority since, despite the fact that in ICD-10 the WHO currently indexes “CFS” only to ME at G93.3, the Wessely School psychiatrists and their adherents who work for the insurance industry have hijacked the term “CFS” to mean a syndrome of “chronic fatigue” (which is classified in ICD-10 at F48.0 as a mental disorder but which the Wessely School erroneously insist is synonymous with ME).

It is essential that in relation to internationally defined ME, UK Departments of State begin implementing evidence-based policy instead of creating expedient policy-based evidence (which the Wessely School has done successfully for almost 25 years) and separate ME from “CFS/ME”. This is now very important, especially as Professor Peter White confirmed in writing to the Editor-in-Chief of The Lancet (a copy of which was sent to me) that: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”. That statement is mystifying, since the PACE Trial documentation consistently refers to “CFS/ME”. Professor White’s statement also raises the question as to why he received £5 million from the MRC (co-funded by the DoH, the DWP and the Scottish Chief Scientist’s Office) to study chronic tiredness that is prevalent in many primary psychiatric disorders, yet he asserts that the results of his PACE Trial are generalisable to those with a serious neurological disorder that he now claims he was not studying after all.

These issues are of utmost importance not only to 250,000 people in the UK and their despairing families who are struggling to cope with a devastating neurological disorder, but also to the clinicians who see for themselves that people with classic ME are physically, not mentally, ill but who are thwarted in their attempt to investigate and support them by the overarching influence of the Wessely School.

I therefore once again call upon both Secretaries of State to provide informed and firm leadership by re-circulating directions that the 1995 mandate to comply with the ICD-10 classifications must legally be complied with by clinical and clerical staff in both Departments of State and that any individuals who refuse to comply are held personally and publicly accountable for any failure to observe that mandate.

It is obviously imperative that different Departments of State have a unified position regarding the nature of a serious disease such as ME and it is equally important that the legal requirements of the WHO be observed by the UK, which currently is not the case as far as ME is concerned. I should therefore be grateful if you would clarify what action is being taken by your own Department about these important issues.

Yours sincerely,

Malcolm Hooper

Simonscat

August 31st, 2011 9:57am Report this comment

By way of response I quote the following letter from Professor Malcolm Hooper to the Observer. It is of some relevance here I feel.

Quote
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC Emeritus Professor of Medicinal Chemistry University of Sunderland, SUNDERLAND SR2 3SD

Chief Scientific Adviser to the Gulf Veterans' Association President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

25 August 2011

Dear Sir,

No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.

It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.

ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.

The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.

No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.

For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.

These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.

The true ME story has yet to be told.
unquote

John Scincere

August 31st, 2011 9:59am Report this comment

We can't separate the mind and body???

How many Hepatitis C patients are cured by CBT - no wait the treatment is Ribavirin and Interferon.

How many HIV patients are cured by CBT - no wait it is antiretrovirals

How many malaria patients are treated with CBT - no wait, it is antimalarials.

All the above three illness have serious psychiatric symptoms associated with them, far more severe that the mild increases of anxiety and depression seen in ME - which incidentally are completely normal for a chronic illness.

Yet no one in their right mind would try and claim that the mind and body are one, and we should treat them psychologically.

In the hands of Simon Wessely psychological medicine, which has a real value in society, is being completely twisted. His views are dangerous and should, and indeed have been discredited my so many other doctors. It is sad that every now and then crazy extremist psychiatrists come along and try and force their idiotic views on others, often by using the media. Walter Freedman was one such person - he toured the USA in his lobotomobile cutting up patients brains. Never once did he show any remorese. Wessely, Freedman, Crawley, Sharpe, White... sadly these psychiatrists must be relegated to the history of abusive medicine.

Harry W

August 31st, 2011 10:02am Report this comment

Make up your own mind - this is what he really thinks.

In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients”.

That same year he wrote in a medical textbook: “The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”.

In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the clear implication that such descriptions apply equally well to today’s ME patients: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician”.

In 1992 the Wessely School directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms; that same year, Wessely went on record about his intention to “eradicate” ME.

In 1994 ME was described by Wessely as merely “a belief” and a “myth” (“I will argue that ME is simply a belief, the belief that one has an illness called ME……I will argue that this line here (pointing to a slide) represents…the line between real and unreal illness”) and he openly named and mocked a seriously ill ME patient in a lecture; that person is now dead.

In 1996, under the guise of a Report from the Joint Royal Colleges of Physicians, Psychiatrists and General Practitioners, the Wessely School recommended that no investigations should be performed to confirm the diagnosis. (This advice to doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School were instrumental. This means that investigations such as a comprehensive immune profile cannot be ordered in the UK -- even though one specific immune test always corresponds to disease severity in ME patients -- nor can patients be sent for fMRI scans that show clear evidence of hypoperfusion in the brain, nor can doctors request SPECT scans that show reduced blood flow through the brain stem in ME patients in a particular pattern that to date has not been found in any other disease process).

In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.

In 1999 Sharpe said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”.

Between February and April 2002 Wessely was involved with a poll of “non-diseases” carried out amongst doctors by the British Medical Journal: along with big ears and freckles, the poll found ME to be a non-disease that is best left medically untreated. As a result, patients with ME were struck off their GP’s list, one extremely sick person being told scathingly “This practice does not treat non-existent diseases”.

Gerwyn

August 31st, 2011 10:10am Report this comment

at Jeremy

Several writers have criticized both Freud's clinical efforts and his accounts of them.[32] Hans Eysenck writes that Freud consistently mis-diagnosed his patients and fraudulently misrepresented case histories.[12] Frederick Crews writes that "...even applying his own indulgent criteria, with no allowance for placebo factors and no systematic followup to check for relapses, Freud was unable to document a single unambiguously efficacious treatment".[33] Mikkel Borch-Jacobsen writes that historians of psychoanalysis have shown "that things did not happen in the way Freud and his authorised biographers told us"; he cites Han Israëls's view that "Freud...was so confident in his first theories that he publicly boasted of therapeutic successes that he had not yet obtained." Freud, in that interpretation, was forced to provide explanations for his abandonment of those theories that concealed his real reason, which was that the therapeutic benefits he expected did not materialise; he knew that his patients were not cured, but "did not hesitate to build grand theories on these non-existent foundations."[34]

Gerwyn

August 31st, 2011 10:13am Report this comment

at jeremy

After the "Cocaine Episode"[80] Freud ceased to publicly recommend use of the drug, but continued to take it himself occasionally for depression, migraine and nasal inflammation during the early 1890s, before giving it up in 1896.[81] In this period he came under the influence of his friend and confidant Fliess, who recommended cocaine for the treatment of the so-called "nasal reflex neurosis". Fliess, who operated on the noses of several of his own patients, also performed operations on Freud and on one of Freud's patients whom he believed to be suffering from the disorder, Emma Eckstein. However, the surgery proved disastrous.[82]

Some critics[who?] have suggested that much of Freud's early psychoanalytical theory was a by-product of his cocaine use.[83]
[edit] The Unconscious

lborgia

August 31st, 2011 11:16am Report this comment

Muddying of the psychiatric with the physical is not a new thing. But history seldom seems to swing the pendulum in favour of the psychiatric paradigm when all is said and done and aetiologies are uncovered. Problems arise when the psychiatric profession want to purposefully decline any physical investigation to ensure their own theories may win the day. This is what we see with the Wessely School. One of Simon's best mukkers, Michael Sharpe, said in 1994: "WE dropped all physical signs from our inclusion criteria". He later said in 2000: " Special investigations such as brain scans do not help the diagnosis of this condition" (in reference to CFS/ME) . Garrulous as ever he later said in 2000: "Psychological factors are important in CFS. Prognostic factors include family factors and social factors." (By the way, and for the record: I have ensured I have NOT missed out a single 'not' in my transcription of these quotes!).

Even when bio markers of the disease are made public, and possible retroviral association (being one) is presented (which despite Wessley School suggestion has not been debunked) Wessely is incapable of relinquishing his own view of psychological trauma being the basis for this neuro-immune disease as an article in New Scientist in October 2009 Observes: Ewen Callaway noted Professor Wessely’s views apropos the discovery of XMRV in CFS patients: “Wessely points out that XMRV fails to account for the wide variety of other factors associated with the CFS, including childhood trauma…’Any model that is going to be satisfactory has to explain everything, not just little bits’ he says”.

Is there not a sense of déjà vu in reading such opinion when we also consider this excerpt taken from Randy Shilts' 'And the Band Played On' which chronicles the people and power plays behind the AIDS epidemic of the late 1970's and early 1980's : "A gay psychologist also wrote a series of articles on the "psychoincubation" of AIDS, maintaining that AIDS victims all had suffered an "emotional emergency" as children that made them feel abandoned. The abandonment now was being played out with AIDS, he said, meaning that a change in psychological posture toward the world could be the best prevention against the disease".

Who now would concur with that ridiculous statement, and why do otherwise (presumably?) intelligent journalists , editors, scientists et al fall for the equally ludicrous and, in the face of all the biomedical evidence to the contrary, entirely false paradigm which Wessley and his cabal have decided to cobble together? Hindsight does not view the AIDS epidemic debacle with much grace. How much worse will it be for ME in times to come when history teases apart the threads of this overly embroidered tapestry? Where will Wessely and those who were cowed by his rhetoric stand in the glare of that inspection?

EyeSee

August 31st, 2011 11:19am Report this comment

I remember seeing a girl in her early teens on the local news, with ME. She was a little plump, extremely bright eyed, with gleaming washed hair and immaculately painted nails. Her doting mother, who said she had to do everything for her child, due to this terrible illness was a paragon of parental care. I just found myself wondering if the 'doing everything for her' came first or not.

anne allan

August 31st, 2011 11:38am Report this comment

There does appear to be anecdotal evidence that ME follows a viral infection; it has only recently been accepted that Type 1 diabetes can also be triggered by infections.
I had 'glandular fever' as an adult, rather than as a teenager. For a couple of years afterwards I had days where I woke and knew I had to rearrange my schedule as I would not have the energy for all but the most essential of tasks. Perhaps ME is a more persistent and deep seated version of that problem.
On the plus side, I didn't have a cold for several years - to the degree where I began to feel a bit of a freak.

Augustus

August 31st, 2011 12:58pm Report this comment

Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.

purplefinn

August 31st, 2011 1:38pm Report this comment

"The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological." After 30 years with CFS, I concur with this statement from the article. The comment by Esther Siebert resonates with my condition as well. I do well with moderate exercise, but "pushing" myself to do more in any area of my life eventually results in relapse. A gentle approach works best for me. I have not tried any medications other than vitamins.

I understand people's resentment of being told "it's all in your head." It's not. But threats of any nature are not acceptable and not helpful.

Our journey toward a healthier life is often frustrating. I pick and choose among the solutions offered. I find that adopting good health practices in all areas of my life is beneficial. For those who work part or full time attending to one's health is essential, but extremely difficult. I had to take two early retirements, because I could just not keep up. The extreme anger at any suggestion that CFS is a personal failing may be due to the loss of livelihood as well.

ern rob

August 31st, 2011 2:33pm Report this comment

As previously mentioned, it's easier to understand Professor Wessely's article if one reads at least the abstract to the ICC, then go back to re-read the Professor's article.

Journal of Internal Medicince 22 August 2011

Myalgic encephalomyelitis: International Consensus Criteria

The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process.

In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology.

It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge.

Thirteen countries and a wide range of specialties were represented.

Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer-reviewed publications, diagnosed or treated approximately 50000 patients with ME, and several members coauthored previous criteria.

The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions.

The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi-type process.

The scope of this paper is limited to criteria of ME and their application.

Accordingly, the criteria reflect the complex symptomatology.

Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms.

Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.

Individuals with Myalgic Encephalomyelitis should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome

ern rob

August 31st, 2011 2:44pm Report this comment