Mind the gap

Angela Kennedy

There has recently been a sustained and ongoing 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 eventual accountability for mistreatment of ME/CFS sufferers. Ironically, David Cameron has 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 cynically juxtaposed with alleged acts of criminal harassment to 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 put forward their reasonable positions.

I am a social sciences researcher and lecturer, and the parent of a person diagnosed with ME/CFS. In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him, though he once wrote an unsolicited email to me, after a critical comment I made about flaws in psychogenic explanations was quoted in a parliamentary debate in 2004. When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they sadly refused to provide that clarification. A few weeks ago in the British Medical Journal, I found that people who wrote to employers were being falsely juxtaposed with alleged 'death threat' makers, as harassers. Perhaps Professor Wessely might clarify that point here?

I have also publicly and offically complained about a recent published trial of psychological 'treatments' in the Lancet (the PACE trial), and certain extremely unsafe (as in dangerous to patients) claims made from this trial. This is not harassment, unless any official enquiry, complaint, or public testimony counts as such, which it does not.

I'd like to take this opportunity to make another one of my public, legitimate, non-criminal disagreements with Professor Wessely here, and that is on the problematic attempt to conflate mind and brain, which is what is actually being advocated in the above article. There is a key tendency in deliberations around ‘the mind’ to perform a linguistic ‘sleight of hand’ (whether deliberately or unwittingly), which results in the mind (an abstract concept) being incorrectly presented as synonymous with the brain, and this call to mix up psychiatry and neurology is axiomatic of this. By this logic any signs or symptoms resulting from a lesion on the brain would be psychogenic (and not organic): because Professor Wessley and his colleagues do NOT think ME/CFS sufferers have a brain (neurological) disorder at all: their use of cohorts in which anyone with a sign of organic disease (including brain disorder) is deliberately selected out, by use of the 'Oxford Criteria' is testament to this: as is the magically voluntaristic approach of their form of Cognitive Behavioural Therapy, in which ME/CFS patients with multi-system dysfunction are led to believe they can get better by adjusting their beliefs; as is the belief in the concept of 'medically unexplained illness' in which a default explanation of 'psychogenic' is proffered.

A full delineation of the problems in the claim psychiatry and neurology are conflatable in regard to ME/CFS (let alone other illnesses) is outside the scope of a comments page. There is much more that can be written. The reasons ME/CFS sufferers and their supporters publicly object to the claims and beliefs of Professor Wessely and many others, and criticise their research, is because (a) these are often implausible, and (b) they have led to the adverse effects of psychogenic dismissal and construction as deviants, which include non-treatment of serious physical damage, and refusal of much needed benefits for seriously disabled people, as just two examples of many adverse effects.

ME/CFS (categorised by the WHO as a neurological illness) is also not the only disease in which a psychogenic misdiagnosis has led to death. One example in the literature is a woman with Creuztfeld-Jakob disease who choked to death because doctors thought her illness was psychogenic: her having had psychological difficulties with coming out as a lesbian, and a difficulty in finding organic signs (which were eventually found, but too late for the patient) leading to this fallacious conclusion.

I can offer referenced evidence sources to support my above assertions if readers are interested.

bizteach1

Thank you Simon for all your hard work. I am a CFS sufferer. I have always been a strong determined person. To be hit by this, and realise how much emotional issues and stress effects me physically still surprises me to be honest. I look forward to a cure/help of any kind in the near future. I was a fitness freak, and now cannot do anything, I tried the graded exercise but I ended up having a relapse. However I do believe in CBT and any kind of treatment that will help me cope and get through the days ahead. I try to stay positive, and I know I am depressed because I have CFS (wouldn't anyone?) and indeed if I did not have CFS I could get back to work and enjoy my life once more.
So please keep up the good work I can appreciate what your article is saying, but we have had so much negative press, sometimes its hard for people to 'read between the lines'.
Cheers

Kevin

When Simon Wessely starts to use only objective measure in his studies on fatigue (not ME), maybe there would be no real separation between psychiatry and neurology. Report questionnaires are after all not scientific. Secondly, maybe if Wessely didn't think thoughts can create disease, rather than the obvious facts that there is only chemicals creating thoughts there would not be this need for separating a subjective labelling system from a science. Finally, if only he didn't suggest all these diseases, that he is incapable of understanding because he is not a scientists and is not up to date on the known biology of the diseases, were socially driven he would stop trying to attach a label of hysteria. No, psychiatry cannot be combined with a science. Secondary depression and anxiety that some patients will get require biomedical science, not labelling and cost cutting.

The Afflicted

Dear Professor Wesseley

As a patient I have noted direct and adequately cited critiques of your research and conduct in public life.
Participants of this critique include respected and highly qualified professionals who have been extremely dissatisfied with your approach to ME for many years.

You have recently interviewed repeatedly for articles which are full of circumstantial, speculative and spurious evidence. Also there are no records of convictions by date or by name to support any of the claims being made.

Not only have your actions stood to exacerbate any dangerous adversarial relationships that may or may not exist, but they also publicise and exaggerate the risk of working in ME research, potentially discouraging the profound and highly demanded interventions of quality professionals.

There is a growing number of informed patients, who have experienced CBT/GET first hand without prejudice only to find their health exacerbated. These patients when looking for answers will quickly find their way to Nunez et al and many other papers which directly challenge the wisdom of prescribing such interventions, moreso on the basis of such alarmingly vague diagnosis criteria.

I would however urge such patients not to spend their time making small complaints against you. The body of evidence that strongly supports incompetence and misconduct grows from year to year. I feel patients should support your learned critics as it would be better that one well researched and fully cited complaint with adequate legal support be made in the best interests of patients everywhere.

I feel I should finally state that, there is a profound role for psychological interventions in the lives of ME patients when used appropriately. Without decent access to good mental health care patients can expect to deal with the following issues unassisted:-

-A perpetual sense of bereavement for the life they had but can no longer maintain
-Young adults who are diagnosed with ME will find the transition from child to adult especially difficult since defining the adult role under the banner of disability becomes a very tricky prospect.
-General depression precipitated by long term suffering.
-Heightened sensitivity to stress
-Loss of identity and status within both peer and family groups.
-Prejudice and stigma

Nash

" I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim."

People can read about the case here.

http://www.cfscentral.com/2010/06/hard-cell.html

As you can see Wessely was involved in the case.

"To compel him to move, the staff placed Ean facedown in a swimming pool without water wings. Too weak to dogpaddle, he sank underwater and had to be rescued. “It was out of the dark ages, the way Ean was treated,” Barbara Proctor laments."

Yes, I agree dear reader, anyone who sanctioned that and knew that it was to happen should not be allowed anywhere near patients.

What about all those symptoms and signs in ME, not fatigued people, that are not in the mind? What about the known and published abnormalities in the immune system, the heart, the muscles, the endocrine system, the bowel? ME has always been the name of the disease since 1956, when a former Cheif medical officer named the disease after a series of outbreaks. It was accepted into the WHO in 1964 and entered in1969 as neurological, again with the name ME. CFS, which does not describe any disease (but which patients with ME have be pushed into) wasn't invented until 1988. The name ME and the classification were based on science, not Simon Wessely's subjective labelling exercise.

The PACE trial that tested CBT and GET showed they don't work at all. Patients were still classed as profoundly disabled and the only objective measure used (6 min walking test) showed no change. Lets just get rid of the Wessely School and aim for the scientific stars. Patients don't need to be hindered by word games and re-wrting of history, denial of scientific evidence and uneducated doctors who have been forced to only listen to people of Wessely's ilk.

Phoebe Snowden

Mr. Wessley, the bottom line is that you are not qualified to medically treat ME/CFS patients, since ME/CFS is a neuroimmune disease similar to both AIDS and MS, and you are just a psychiatrist. You should leave the medical treatment of patients with neuroimmune diseases to virologists, infectious disease drs, immunologists, neurologists, and those physicians who have the appropriate credentials and training. Your insistence that ME/CFS is caused by "false illness beliefs" has been disproven over and over again for the past 20+ years. Numerous pathogens, including HHV-6, Epstein-Barr, CMV, and mycoplasma are found in high levels in ME/CFS patients, as are brain lesions, orthostatic intolerance, and many other quantifiable abnormalities. Most recently a retrovirus called XMRV has been found in both ME/CFS and prostate cancer patients. It must be somewhat devastating for you to find that your hypothesis about the cause of ME/CFS has been incorrect, however, by refusing to capitulate and then spreading vicious lies about how bedbound patients are trying to kill you, you are violating your Physician's Oath. You are intentionally harming innocent, desperately sick people for your own gain, and it is shameful. Patients do not need psychiatric help: they need antivirals, antibiotics, and immune modulators. They need to get the appropriate testing. You cannot think yourself well from CFS any more than you can think yourself well from AIDS. And as the main symptom of ME/CFS is post-exertional exhaustion, GET is detrimental to ME/CFS patients. Please do yourself and the ME/CFS patient community a favor, and treat the patients who you were trained to treat, ie those with psychiatric problems, where your assistance will be helpful and appreciated. There is no place for your contributions in the ME/CFS field.

Dr Ellen Goudsmit

As another target, I am well aware of the tactics used as they were also directed against me. However, it's misleading to claim that the anger reflects prejudice, a problem with the stigma against mental illness, or mind and body dualism.

I've been a long time critic of the specific psychological models promoted by Prof. Wessely. As a psychologist, I do not share the lay views of psychiatry. I don't know the cause of ME but was known for challenging some of the arguments concerning the role of fear and avoidance in maintaining the symptoms. I've also written at length on the flaws in the trials assessing CBT and GET, currently recommended in the NICE guidelines. In short, I disagreed with Professor Wessely's approach which emphasizes a psychogenic aetiology, simply because I am a scientist and was aware of the evidence against it. This didn't protect me from poison pen letters, two complaints to my professional organisation and two court cases for harassment (which I won).

Most patients with ME are just like people with cancer and MS. I know that from my many years as a patient and from research carried out for my PhD. I know the ring leaders and most do not have ME. It was a small group who incited others using the internet. They were able to exploit the frustration caused by totally one-sided articles in journals such as the Lancet, and more than ten years of misrepresentation and trivialisation in the general media.

History will demonstrate the extent of the bias which continues to this day. Unless you know your way around medical search engines, few will be aware of the growing evidence for a persistent infection and the abnormalities in muscle and immune function. Are there no journalists able or willing to write a balanced article noting how some of my colleagues have shown little respect for those of us with a different view. Those of us critical of the CBT protocols requiring patients to disregard symptoms based on the assumption that there is no underlying disease? Who are aware of the evidence of ongoing disease which deserves more research? Isn't this article part of 'group think'?

Yes, some of us had a hard time and it was extremely unpleasant. However, what we went through wasn't so much about psychiatry, as about power, laziness and intolerance.

Ian McLachlan

If Professor Wessely feels that there should be no acceptance of a separation between Psychiatry and Neurology then does his view not raise the question: Why not go further and confine Psychiatry to history by making it a redundant discipline? The emphasis today is on evidence based medicine, and any division between psychiatry and neurology is really based more on the requirement of a standard of scientific proof; with neurology been the much higher of the two. A rigorous cost effective scientific approach is all ME sufferers have been seeking for years as their instinctive and accurate perception of their level of suffering, has always indicated that a required medical approach has to be at a much higher level than that of psychiatry. All psychiatry has really achieved is that patient views have been downgraded and their illness misrepresented as psychogenic in nature. The fact that this is never acknowledged is the real issue. Anyone who suffers from any illness has the right to question an approach they feel is inappropriate. The fact that sufferers are doing just that should not be lost in amongst the various accusations currently being thrown at them.

Bill Wallace

Disclaimer, I am married to an ME sufferer

Dr Wessely seems to be conducting a campaign of vilifying people who disagree with him while seeking self-justification.

The fact is that the NHS in England, heavily influenced by Dr Wessley s out of step with the World Health Organisation and medical organisations across the world, including the NHS in Scotland.

The illness is Physiological, not Psychological as Dr Wessely asserts. The treatments he proposes, and which NICE and the NHS have adopted, are not suitable for a Physiological illness and, in many cases, have been shown to be harmful

The criteria Dr Wessely points to as the foundation of his theories were selected by Psychologists and reflect biases that favour their profession. The criteria accepted everywhere else are the Canadian criteria, as the Oxford criteria have been shown to be reply flawed.

You might find an article examining the history of Dr Wessely with this illness, how he stands to the rest of the world and the unsubstantiated accusations he has made with those who disagree with him of some value.

bella

If you care so much about people with ME, why - as a member of the Science Media Centre who (clearly) has access to having your views widely disseminated in the media - didn't you express your outrage at Rod Liddle's phrase 'malingering mentals' or at the spiteful cartoon about people with ME in the Times recently? Surely, as a specialist in ME and with such direct access to the media, and of course caring about your patients as you say you do - surely you would've felt compelled to correct such cruel misrepresentations of people with ME. Surely.

Jane Clout

Oh Simon, you sound so reasonable here. And yet before you and your colleagues, Peter White, Michael Sharp and Trudy Chalder became the 'experts' in CFS, there was a neurological illness called ME. You have done your best to hide it under the label CFS - rather like calling Alzheimers "Chronic Forgetfulness Syndrome".

People with Myalgic Encephalomyelitis then were treated with more respect, not less. How many of us get better under your regime? Most of us who have ME and are put through your 'treatments' get worse, some much worse. Remember Sophia Mirza? Lynn Gilderdale? May they rest in peace.

You have done so much to include ME in Chronic Fatigue, with your input into the NICE guidelines (precluding biomedical testing), your position as pundit for the Science Media Centre on all things CFS and ME, your recent studies spending millions of pounds of public money and coming to no real conclusions.. and we are still sick. Many of us have been sick for decades. More and more people are getting this devastating disease.

Remember what you said in the BMJ podcast of 5th March last year in the wake of the discovery of a retrovirus in a large percentage of us?
"We're not going to go on doing more and more tests to find what was the virus, because frankly even if we found it there's nothing we're going to do about it, we're in the business of rehabilitation."
(at 11.24, http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/)

For a full, referenced understanding of Prof. Wessely et al's involvement in the obfuscation of a neuro-immune disease, as devastating as AIDS, MS, and Cancer (and perhaps, a form of AIDS) see here: http://www.meactionuk.org.uk/Corporate_Collusion_2.pdf

polly

PR exercise or merely free publicity?
Simon Wessley has publicly stated that he is no longer involved in ME research and yet we have had a orchestrated campaign over the last month consisting of radio programmes and newspaper articles regarding the "death threats" that he has received. If these threats are being taken seriously then where is the evidence of court actions and prosecutions? Could it be that a new book is being written by SW and this is a very good and free publicity campaign to ensure that the book sells well? What other explanation could there be for drawing attention to "a minority of people" who may not have ME? The involvement of Psychiatry in the field of ME has not helped our cause at all and has done untold damage.
Person with ME for 25 years.

renethorpe

Liaison Psychiatrists are supposed to work together with those knowledgeable in other fields of medicine not to take over the care of those with neurological, immunological, rheumatological illnesses To work in harmony with them and the patient. Right then here's the deal Simon Wessey . Take every body with a so-called neurological illness off their medication and offer them CBT and GET. no pain relief or anything else. Do NO research into finding the biological cause of their illness and see if they start to dislike what is happening and see if they behave in the same way that the disgruntled ME sufferers ere. Try asking immunologists., virologists and those who work with muscle abnormalities, gut inflammation, wide spread body inflammation and heart failure and see if they approve. There are many eminent researchers out there in the real world, including many in your own field of work who do not agree with your theories and who have disproved that CBT and GET are affective for the MAJORITY of people with chronic fatigue let alone ME. It is not the ME patients who are kicking of it is ME scientists working in their own field of expertise. People with ME know this it, as it is where they pick up such valuable insight into what is going on at a cellular level. We are not inventing the science you are ignoring.

Oh that's OK though whatever goes wrong in our relationship with you we can all blame Freud

ME survivor of 23 years

Scott Wilson

Given the way in which psychiatric patients are so commonly treated, it is entirely understandable for those with neurological disorders to be keen to maintain some distinction between neurology and psychiatry.

While CBT and GET have been shown to bring some benefit to patients with multiple-sclerosis, MS patients do not have to put up with the sort of misleading claims that CFS patients do. At my NHS CFS centre I was told that all patients who 'genuinely engaged' with a graded exercise programme would fully recover. While I expect that Prof. Wessely would condemn such quackery, he does not seem to understand the role that his own work has played in creating social system in which it is seen as acceptable to pragmatically manipulate the cognitions of patients in order to promote 'functionality' rather than an honest pursuit of truth.

I think that it is this pragmatism, and the series of false claims it has led to, which have caused the anger and resentment that surrounds CFS, not just the fact that it is psychiatrists who have promoted such an approach.

I had no problem being referred to a psychiatrist: they told me that I did not suffer from any mental health problems. When I later went to a CFS centre, it was the dishonesty of the CBT practitioner that left me feeling disgusted by the way CFS is treated, not the use of CBT itself.

The current discussion on CFS in the British media seems to be based upon the assumption that there have been no real problems with the way in which CFS has been treated, only the presumption of problems by unreasonable patients who stigmatise mental health problems, or are unduly committed to some naive form of Cartesian-dualism. As one of those patients who is angered by the poor quality of the psychiatric work which surrounds CFS, and the harmful impact Prof. Wessely’s work has had upon the treatment of myself and others, I want to make it quite clear that this is not the case for for any of the other patients whom I have spoken to.

It is always easy to dismiss the arguments of a straw-man, but when only one side is being heard, no real debate can take place, and very little understanding will be gained. I do hope that The Spectator will provide space for some of those who are critical of Prof. Wessely and the impact he has had upon the way CFS patients are treated.

Jack

Merge psychiatry and neurology? What another bad idea. A lot better would be to abolish psychiatry altogether, as this non-science has such a rich history of deeply unethical "treatments", an history of deception, an history of taking all patients the scientific branches of medicine don't want to deal with and putting meaningless labels on them, etc.

Medicine needs badly to move away from classifying diseases simply based on symptoms and start to look for root causes, and the very nature of psychiatry is to look for root causes that are not.

Irene Thorpe

The Crux of the matter is Simon has a very closed and fixed mind. He falsely believed that PWME had a false illness belief. (That is not neurological simon its psychological) he has to continue it now as his profession reputation at risk )) so now he blanks out all research that shows otherwise and blanks it out of SMC at the same time.Nothing is going to change his mind maybe it is he who needs CBT therapy. Why do reporters promote only his belief as gospel when there are many more modern day state of the art, this century's technology study s showing ME to be a neuro_immune illness. Are reporters being hypnotised

Edna Ellis

You've done enough, Professor wessely. Now please step aside.

Jenny Lay

"numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up."

Please can you name any of these people? (Other than Myra McClure, of course, who claimed she was giving up CFS research yet cannot seem to keep her fingers out of the pie.)

Because, in our patient community, it is exactly these scientists - those who are genuinely looking for causes, biomarkers and treatments - who are lauded for their work, thanked for taking us seriously, sometimes provided with funds by patients who struggle to afford even the basics in life, invited to speak at events and treated with the utmost respect. We live for their successes and sympathise with their failures. We are there for them, and they are there for us. If you don't believe me, ask Dr Klimas, Dr Mikovits, Dr Chia, Dr Montoya.

Could it be (particularly in the UK) that the 'scalding' these scientists experience has more to do with denial or withdrawal of funding and political pressure to come to the right conclusions?

Derek Benyon

Prof. Wessely, do give it a rest. We have been hearing about these death threats for ten years now. Every so often you raise them yet again to deflect attention from more positive news regarding M.E. Your personal influence in the "independent charity" that is the Science Media Centre sees to that.
Were any of these death threats, poisen pen letters etc ever reported to the police? Do you have any crime numbers? No? That's a shame.
As to people twisting your words, pot and kettle spring to mind. Any investigative journalist worth his salt could expose your contradictions and economy with the truth.
So now you wish to instruct the World Health Organisation how to classify M.E? Your self belief, nay arrogance is breathtaking. Today the W.H.O. tomorrow the world?
I ask but a simple question Prof. Wessely. Are you aquainted with the requirement of all clinicians, "First do no harm"?
I am a housebound M.E. sufferer who shows absolutely no signs of depression. To be in so much excruciating pain and to bear it stoically and with good humour, somehow doesn't fit the description of a threatening, hatemongering extremist does it?

John M

Are there not already moves toward this? With neuropsychiatry etc. Interesting take nonetheless on a clearly debilitating illness.

Anonymous

As someone who has suffered from depression on and off for years, often with physiological effects which include exhaustion, pains, and stomach-churning anxiety,I find it quite problematic that we should draw such a differentiation between what's 'all in the mind' and what's 'real'. If a symptom exists, it exists. I find it deeply offensive that psychological disorders are denigrated so much, and that the 'holy grail' of diagnosis is to find a physical problem as a cause. Why this fixation? It seems like a fairly arbitrary distinction based on a culture of quick-fix pills - we should acknowledge all suffering, no matter why it is, and find the best possible solution, whether that's therapy, drugs, or some combination of the two. We need an end to this tiered system of how we value illness.

Andrew

Regarding the research into human gammaretroviruses that has got the Wessely school in a spin about their employment opportunities.

The xenotropic polytropic hybrid that was found in ME patients by a consortium of scientists at the National Cancer Institute (Ruscetti - discoverer of HTLV, the first human retrovirus), Whittemore Peterson Institute (WPI) and Cleveland clinic, was supported by the findings of Lo et al. (FDA and NIH - Harvey Alter, discoverer of Hep C), who found xenotropic (Katzourakis, 2011), polytropic and modified polytropic sequences. The WPI and NCI have reported several months before this paper was published that they were also finding the polytropic and modified polytropic variants. Many of which are in the GenBank. These terms are by the way, subjective and not based on scientific principles. The findings therefore match.

All the negative papers have failed to replicate proven methodology or have not used clinically validated assays. Making it impossible for them to state that the people tested (after all some people used criteria that would exclude ME patients) were negative. It is unlawful to do this with a HIV assay.

We also have the JHK variant that was first detected in 1989 predating the hypothetical recombinantion of two viruses that John Coffin would like everyone to think happen in a human cell line between 1993 to 1996. A hypothetical idea that still does not argue against anyone being infected by the one variant in the cell line and cannot account for the other variants. Furthermore, the paper failed to mention in the text the RT-PCR assay that one of the authors said was used on one lot of items to be screened (later xenografts) whilst speaking a few weeks before at the CROI conference this year. The video of that is still on the CROI website.

Mark Henry

Dear Simon

I'm sorry you feel unappreciated.

Look on the bright side though. You have managed to build a very nice career for yourself over the last 25 years or so.

Coincidentally, over the same period, I have lost my health; career and future prospects due to an illness that only appears to be properly understood outside the UK.

Those are the breaks I suppose and I've no intention of whining about the injustices of the world - certainly not on public forum.

I'll leave that to readers of the Guardian.

Giles Meehan

trying to comment but it won't work

Phil Allen

Thank you for publishing this excellent and insightful article by Professor Wessely. Many people with ME are huge admirers of Professor Wessley but are too frightened to speak out incase we're attacked by animal rights activists.

Professor Wessely has acheived more for people with ME than Nelson Mandela did for the black majority population in South Africa yet only one has recieved a Nobel Prize.

It's time for the Nobel committee to stand up to these people who are often unable to stand up themselves and nominate Professor Wessely for a Nobel Prize. If not for medicine then why not literature?

Thomas

My partner was diagnosed with ME/CFS in 1996 and, after a number of years was lucky enough to get on a trial CBT programme at King's College Hospital.
It worked, she regained her strength and her life and we now have two children.
So I'd like to thank you Dr Wessely for whatever part you played in developing that treatment and wish you strength in your continuing work.
As for the people raging on this comment thread who have CFS, or know someone with it, give CBT a go, it might just work for you too.
I have two girls who are glad it worked for their mum.

Giles Meehan

I agree that separating mental illness from physical illness is often not helpful and often does not make sense. How often do we ask if a disease is cardiac or physical, or endocrine or physical?

Giles Meehan

(cont/d) Thousands of pieces of research from around the world have consistently shown that people with ME (with post exertional malaise, measurable cognitive and autonomic dysfunctions, persistent immune symptoms, etc... as distinct from generic chronic fatigue states or feeling tired all the time), do have ...

Giles Meehan

(cont/d) ... inflammation and lesions of parts of the brain and spine (including dorsal root ganglia) ...

Dr Art Tukcer

As I am very familiar with the PACE study and the ethics behind the project (approval, complaints and appeals) I applaud and support the research team in the face of aggressive, misleading and factually inaccurate reporting. The actions of a misguided minority have exceeded reasonable and fair discussion by far. If you don’t believe me just search via google to find the slanderous allegations from people hiding behind anonymous chatter.
The significant fact to consider is that each patient had given informed consent to participate.
The population against research in this area have the absolute right not to participate; but they have no right at all to prevent others.
The tactics used in this case are recurring in other projects within this area, and in other medical research. Shame on you.

Giles Meehan

( as shown in brain scans and in post mortems),

Giles Meehan

and abnormalities with cytokines,

Giles Meehan

the immune system,

Giles Meehan

hormmones esspecially the hyppothalamus pittuitary adrenal axis, mitochondrial function (and cell free DNA), cardiac output, and possibly liver function, amongst others.

Giles Meehan

So, whatever the causes and triggers of ME (which may partly include emotional or life stresses in some cases), and recognisign that there can be psychological symptoms associated with it (from neurological factors, and/or from living with a debilitating chronic illness), I hope the medical profession and media will now clearly acknowledge that ME is certainly not a behavioural disorder where people mistakenly believe they are ill but just need to be convinced that they are well. It is this assertion, I believe, that has caused anger and frustration, and a small minority to make threats. Let us look forward to research into the true causes of ME and associated treatments.

TomH

I do not want to comment on the science since clearly neither side is listening to the other, but suggest out that people with such entrenched opinions probably do not want a resolution since this would remove a part of their identity

Irene Thorpe

would Simon Wessely and anybody else here like to donate to Invest in ME's project to get the very first treatment and biomedical research centre of the ground please. The quicker we can do this the quicker all hostilities and misunderstandings will disappear and we can all be friends again

http://www.everyclick.com/doit4me?forumid=331851

hazel quinn

I've tried GET since 1991. When I collapsed from it I tried again later in case things had changed in my body....I collapsed after the first session and could not get well enough to do a second. I've tried a few times. Also tried CBT. Still sick.

I've had to live in appalling conditions in the past because if I was helped it would be confirming my belief I was ill. I was denied access to clinicians for help by the NHS for the same reasons. I went privately to Professor Weir (remember him, Mr Wesseley?) and he took me into my own room in an NHS hospital for months. Had he not I do not see how I would be alive today. During all this time had I donated my blood I'd have been prosecuted. The NHS do not want my blood.

Is this Mr Wesseley's fault? Indirectly he has a lot of responsibility for what us bottom feeders have to endure. The comments above this state it well. The medical people (some of them themselves suffering with M.E.) put the facts well. The personal stories like mine? I'm a scrounger denied the benefits I need to live on. I live on such low monies yet used to have a really, really well-paid job in music that was my life and soul. I've never been well enough to care for children so have not had them. I will never have grandchildren either. Life has been physical hell since I was a child but I did the best I could with it when others would have given up. Now? Mr Wesseley, come and take the place of my social services paid for home carer for a year. REALLY see...CBT/GET doesn't work for me. What else is on offer? You didn't publish in your article how much money has been given for psychological research into the illness and how little for physiological research.

Had I cancer or any disease I would welcome any psychological intervention if I needed it to cope with the pain, the limitations, the bereavement caused. I have welcomed psychological intervention to cope with the symptoms of this disease - but they've not cured me, helped me physically at all. Many more times I've needed help just to cope with the prejudice, the denial of the fundamental aspects needed to live such as food, water, cleanliness - denied to me by my inability to physically see to them and the refusal of society to co-operate and help support those needs. Many people with M.E. commit suicide. That proves they're depressed? For many it is because they have no hope, their symptoms are overwhelming and they can't access pain management, financial support, social care. It has been proven that when M.E. sufferers have their human rights upheld the suicide rates go down...

The way this disease seems to be spreading most people now know of someone close to them suffering. As they see it first hand they'll know what is truly going on. In the meantime because the seriously afflicted are bedbound/housebound or only outside at their very best it remains 'hidden'. Little or no integration between sufferers and the general population to see what hell looks like.

You've been saying you're out of M.E. debates for years but you still keep popping up. WHY? Also, I'd like to see evidence of these threats. Are there police records? What's YOUR psychological need to continue with this when you're clearly not wanted? Where are these grateful patients. Due to the lack of disgnostic tests (and the lack of funding to find any thanks to it going into psychological treatment funds) did they have M.E. or one of the variant diseases that may at the moment be coming under the umbrella?

BTW, if you can't stand the heat get out of the kitchen as you keep stating you already have (and that wasn't a threat just some good advice). We're sick and ourselves and many experts working in M.E. are sick to (almost)death of you...

Mrs S Spearing

For the last month we have seen various aticles by the Psyciatrists & Journalists being very rude & ignorant about a very physically ill group of people.I will state that a couple of people who have been so threatening & if knives have been involved is dreadful but instead of doing a huge PR propoganda media articles should be going to the police & getting them to do their job.The Media have not done amy research into what ME really is & there are about 250,000 with this illness in the UK & about less than 1% been threatening but the others are being abused by the press.ME is a neuro endocrine Immune illness affecting the brain,the brain stem,senses,Autonomics ie Heart ,Breathing,Blood pressure,vessels, Gut,bowel & bladder,boweinflammation,Immune & Neuro Inflammation,muscles & mitochondria abnormalities but in the UK only get 2 therapies but no symptom medication or biomedical research,except what is being done at ME Research UK & Newcastle Hospital research.This is why the ME community are so angry with Prof Wessely & the NHS ,Dept of Health & NICE.

Enid Florence

I'd like to make 2 points -
1) ME is a well known multi-system disease - my Consultant Neurologist whilst accepting an abnormal MRI scan admitted he did not understand (too many other symptoms present), thought viral and asked me to find an ME specialist ie OUTSIDE his own field and to whom he would release all his own findings.

2) Why would one choose CBT and GET when one can now find Doctors at last finding and addressing underlying causes (pathologies) and treating.

My point is what a Psychiatrist doing in this area of medicine.

Louis Harper

I think it's telling that you seem to oppose brain imagery of people suffering from ME, Mr Wessely.

Perhaps you should step aside and let the virologists take over from here, where exciting new progress is being made into the real causes of ME.

Anonymous

In Holland, our neurologists are also trained in psychiatry, certainly to a greater degree compared to the UK, and in my experience, the standard of neurology is not as high. If routine tests come up negative, there is a tendency to diagnose a psychological problem at a much earlier stage. For example, a person with weak legs might have blood tests and a MRI but not a muscle biopsy before being diagnosed as having a form of hysteria or whatever the term for that is today.

May Owen

As a lay observer...

If there is no definitive set of symptoms (ergo no definitive test for ME) than can we not accept that it may operate as an umbrella diagnosis, occasionally sweeping up conditions which are different from one another. In that case, is decrying the offer of therapy which involves CBT and graded exercise sensible? Obviously there are patients for whom this is efficacious.

As for the prejudice against viewing ME as a psychological complaint - this is grossly unfair to those suffering from issues like depression and anxiety (both of which can and do stop people from living full lives). Also, depression can manifest itself physiologically, can't it? The hierarchy of physiology > psychology is arbitrary and superficial.

polly

The problem that patients have with the Wessely school of thought is that the only options for treatment offered are CBT and GET. There is no other chronic illness where the only treatments offered are these . Im sure MS , Aids , Cancer patients would also be appalled if they went to the doctors and were only offered CBT . I myself have suffered from constant abnormalities in my blood since becoming ill with ME . No amount of CBT will alter this fact , no amount of CBT will revert my abnormal blood results back to normal . Therefore whilstever these are the only options for treatment in this country I will remain ill . My health has drastically declined over the past 5 years , I have attended a so called me/cfs clinic it shared a waiting room with the gender realignment clinic need I say more . My bloods were never once checked whilst attending this clinic even though they knew my bloods kept showing abnormalities . I was told by the clinic they didnt really think I had tried with the CBT and that unless I accepted I had this illness ( which I have ) I would never get better . Nothing like blaming the patient is there ? Needless to say we parted company . I did not recognise myself in any of the literature produced by the ME/CFS clinics . I am not depressed , I am not anxious , I dont do self pity . I have always been very laid back , easy going and a very logical thinker . I knew nothing about ME/CFS when I became ill , so I had no views , thoughts or insights into this illness . I only began researching several years down the line and was appalled by what I found . No wonder I had been patronised and ridiculed by several doctors . Mr Wessely has played a huge part in all this and that is why patients are angry . Millions of people worldwide are suffering , the abnormalities are there however you cannot find them if you do not look for them in the first place . We need biomedical research now . Living with ME is like living in purgatory before you are even dead . I want my life back , I have a long to do list of things I would love to be able to do and the list is getting longer . CBT may help some patients cope with their illness however it can not change the many abnormalities that other scientists are finding in patients and it is these patients like myself who need biomedical research . Havent we suffered enough ?

nasim marie jafry

I was diagnosed with ME in 1984 by a consultant neurologist in Glasgow - I was not yet 21-yrs-old, my university studies had been violently disrupted 2 yrs previously when I contracted the Coxsackie B4 virus, an enterovirus - many people in the West of Scotland were infected at this time. On the contrary, my neurologist was not irritated by me, he was simply frustrated there was no known cure; he pronounced me 'gravely ill with a houseful of abnormalities' - this diagnosis after EMGs and muscle biopsies and much blood taken. All other serious illnesses had been ruled out. I took part in some clinical trials: a plasma exchange with immunosuppression; Imunovir - an anti-viral drug; high doses of evening primrose oil. None of these made me better, but I was being respected and this eminent doctor was at least able to explain to me why I felt like I was dying. Over the years, I have had private treatments, including intravenous Vit C and magnesium; and ACTH injections. Both of these helped, I guess because they are anti-inflammatory. After almost 30 years I can say without doubt that pushing myself makes me worse - causes catastrophic relapse - and resting is the ONLY thing that can help me. And in spite of my illness, I managed to complete two degrees - part time - and have a novel published. My life is still a shadow of what it would have been and it is incomprehensible to me that a consultant psychiatrist would hijack a neurological illness, ignoring 5000 papers on the biomedical aspects - remodel it to suit his own very flawed biopsychsocial model. He claims to have almost 3000 patients who are grateful to him. There are an estimated 250 000 suffers in UK alone, so what about the rest who are *not* grateful and are furious with him for conflating ME and the more nebulous CFS? This last month of media attention, with its hyperbole and bias to wards Prof W is simply farcical - one wonders what he is so afraid of that he has to promote himself endlessly with such a shiny PR machine behind him.

nasim marie jafry

Hello, I left a comment ten mins ago, it has not appeared automatically, please can you fix? I don't want to duplicate. Thanks

wntk

Dr. Art Tucker says people should be ashamed for complaining about the PACE Trial. In case people don't know, this trial cost £5m of taxpayers' money.

Is Dr. Tucker aware that the primary outcome measures as published in the trial's protocol (BMC Neurology) were not reported in the Lancet paper? I practicised frowned upon as it can lead to biased reporting - the whole point of registering trials is so investigators can data dredge.

At least in the Lancet paper, the mentioned that they had changed the primary outcome measures - they altered the adverse event outcome measures but didn't mention this fact.

Then they didn't publish many of the secondary outcome measures.

This included not publishing the recovery measure. Instead, they reported a post hoc definition claiming a score of 60 or more on the SF-36 physical functioning scale and 18 or less on the Chalder Fatigue questionnaire represented normal functioning, even when people entering the trial could get these scores, or indeed better scores - so you could deteriorate during the trial and they could still claim that the trial that the treatments brought about normal fatigue and functioning. A score of 60 is a typical score for people in their 70s and 80s, and much much worse than for normal functioning for the people in this trial who are of working age.

£5m of taxpayers' money was spent on this trial but the results were not well-reported.

If Dr. Tucker was aware of any of this, to use his language, shame on him for posting should a biased comment.

If he is not aware of these facts, it looks like he's been duped.

J Livingstone

@Louise Harper: I think you misread the article. I don't think he's opposing brain imaging at all: In fact his proposal to bring neurology and psychiatry closer together would imply MORE studies that involve brain imaging.

wntk

Drat, there were a few typos in my message to Dr. Tucker.

The second and third paragraphs should say:
-------
Is Dr. Tucker aware that the primary outcome measures as published in the trial's protocol (BMC Neurology) were not reported in the Lancet paper? A practice frowned upon as it can lead to biased reporting - the whole point of registering trials is so investigators can data dredge.

At least in the Lancet paper, they mentioned that they had changed the primary outcome measures - they altered the adverse event outcome measures but didn't mention this fact.

nasim marie jafry

From MEActionUK, 2007

http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Interesting to see a journalist’s words to SW in 2003:

“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.

wntk

Double drat, even my corrections need corrections!

I meant to say: "the whole point of registering trials is so investigators *can't* data dredge." Note to self: re-read your messages before not after you post them!

If somebody dealing with the messages could delete my two previous posts, it would be great (it's ok to leave in this part of the current message i.e. you don't need to edit this message). If not, it's not the end of the world, here's what I meant to say:
----
Dr. Art Tucker says people should be ashamed for complaining about the PACE Trial. In case people don't know, this trial cost £5m of taxpayers' money.

Is Dr. Tucker aware that the primary outcome measures as published in the trial's protocol (BMC Neurology) were not reported in the Lancet paper? A practice frowned upon as it can lead to biased reporting - the whole point of registering trials is so investigators can't data dredge.

At least in the Lancet paper, they mentioned that they had changed the primary outcome measures whereas when they altered the adverse event outcome measures they didn't mention this fact.

Then they didn't publish many of the secondary outcome measures.

This included not publishing the recovery measure. Instead, they reported a post hoc definition claiming a score of 60 or more on the SF-36 physical functioning scale and 18 or less on the Chalder Fatigue questionnaire represented normal functioning, even when people entering the trial could get these scores, or indeed better scores - so you could deteriorate during the trial and they could still claim that the treatments brought about normal fatigue and functioning. A score of 60 is a typical score for people in their 70s and 80s, and much much worse than for normal functioning for the people in this trial who are of working age.

£5m of taxpayers' money was spent on this trial but the results were not well-reported.

If Dr. Tucker was aware of any of this, to use his language, shame on him for posting should a biased comment.

If he is not aware of these facts, it looks like he's been duped.

nasim marie jafry

Would Prof Wessely accept blood donations from someone with a diagnosis of ME? Mmm, I wonder. Of course I couldn't donate mine because blood donation by PWME is banned in UK.

And, Prof Wessely, we only have your word for it that neurologists in 1987 were 'irritated' by patients insisting they had ME. When the consultant neurologist - a professor like yourself - diagnosed me with ME in 1984 I had never heard of it and had to write it down so I could remember. I don't recall telling him I had ME, it was definitely the other way round!

Why, I wonder, is your version of my illness - 30 yrs later - more significant than my own or that of a professor of neurology?

Mark Henry

Lets see :

death threats - check;
knife wielding extremists - check;
young researchers being driven out of the field - check;
naive Cartesian dualism - check;
the ME/CFS patients don't respect those with mental health problems straw man - check;
no one knows what causes ME/CFS - check;
who could complain at treatments that 'help relieve symptoms' - check;
CBT and GET are used for many diseases - check;
CBT saved my (my wife's; my daughter's) life and the NHS staff were all angels and we are the silent majority - check;
Supported by 'Gold standard evidence based research' - check;
the ME/CFS patients believe all psychiatrists are 'evul' straw man - check.

Talk about a broken record. Is this the Speccy or "Bad Science" forum.

I'm surprised we haven't had the 'hordes taking off label anti retrovirals'; 'wasting scarce research funds chasing rumour viruses/time to move on'; 'no good biomedical research proposals coming forward' memes as yet.

I suspect its early days.

Bill Wallace

I'd be interested in a comparison of the IP addresses of the glowing testimonials for CBT

I'm not against CBT, I've found the methodology very useful in helping me assess activities in behaviour in my life.

However it is of very limited value with ME. gET is worse than useless.

Those saying "objective to characterisation of ME as a psychological illness is disrespectful o people with depression." no. No it isn't

If your leg dropped off, I told you you were imagining it and you kept insisting it was a physical problem, would that be disrespectful to people with psychological problems? No, because you want your physical issue treated ropily

So it is with ME sufferers, they want their physical illness treated properly, not mistreated in order to make Simon Wessely feel better about himself

nasim marie jafry

I have a piece up on Guardian's CIF, on living with ME. Alongside another ME sufferer. You can join the debate here:

http://www.guardian.co.uk/commentisfree/series/the-people-s-panel

Louis Harper

@J Livingstone

I'd agree that there's more than one way to interpret it, but reading between the lines, I get the distinct hint Wessely was against the idea of brain scans. That's my interpretation.

As to whether bringing neurology and psychiatry together would lead to more brain imagining. I'd say it could easily lead to LESS brain imagining, as specialists more easily conclude a psychiatric cause without greater investigation.

Louis Harper

The more I read about the PACE trial, the more obvious it is that it was a complete farce, manipulated to get the desired results, with inconvenient data hastily brushed under the carpet.

HP

What kind of doctor use the medias to misrepresent a quarter of a million people
with a debilitating neurological illness as violent terrorists because of the
alleged behaviour of a few cranks?

Where is the actual evidence that anyone with myalgic encephalomyelits has ever
threatened any doctor? Have their been any prosecutions? Why are genuine letters of concern and complaint being deliberately misclassified as threats?

M.E. has never been classified as a a psychiatric or personality disorder. it has always been classified as a physical, neurological illness alongside the similar illness MS.

The real victims here are not the psychiatrists who have taken all the research and treatment funding for M.E. since the 1980s whilst muddling it with other fatigue causing illnesses under their invented umbrella term' chronic fatigue
syndrome'. It is the patients whose lives have been wrecked by this illness and who can access no effective treatment, only contempt and psychobabble, who seem to be the targets of a campaign to denigrate them, orchestrated by the very doctors paid to care for them.

May

@Mark Henry; comment denying the validity of any critique or comment from anyone you disagree with - check.

Bill Wallace

In my last post above "ropily" should be "properly"

ME is being dealt with ropily now, that's the problem

There are a couple of other glitches in the post, but that's the only one that changes the meaning

andy

I feel Simon complains too much, he claims he has retired and prefers to work in Afghanistan and Iraq yet he has the loudest voice and wishes to push his ideas, views, opinions and complaints of ill treatment more than those he claims to support . At the same time he wants to deny people with ME their basic rights to complain about their lack of treatments, biomedical research, and recognition, even though these are conducted through the proper channels in a democratic fashion.
He also wants to radically change or redefining medicine by merging together neurology with psychiatry. He also thinks the World health organisation should combine together the two separate areas of neurology and psychiatry, which of course would damage our WHO definition of ME as a distinct neurological disease. No surprises there then from Simon.
For a chef who no longer works in the kitchen, he still wishes to decide the menus ,insult the guests, rearrange the furniture, close the hotel and reopen it as something totally different. Maybe it’s time that Simon (with his dislike of negative attention and his wish for people not to complain about him) like the chef, should also leave the building with dignity and grace.

Jackie S

Would a 'Neurosciences and Mental health' category for ME/cfs research grant proposals to the MRC preclude the success of a research grant proposal for say Cardiovascular research for ME/cfs, or Immunology, Toxicology or Genetic research proposals for ME/cfs?

Dr Kerr's recent Genetic research study at St George's Hospital in London successfully discovered that there were in fact 7 distinct sub sets of patients all languishing under a simplistic diagnostic title of 'ME/cfs' - indicating that 'the' disease is in fact likely to be several different entities rather than just one. This was a dramatic breakthrough using modern technology that has only recently been available to the research community and enabled scientists to take a large step forward in medical understanding of the heterogenous nature of the condition known as 'ME/cfs'.

However, Dr Kerr's proposal had had to be privately funded (by patients amongst others) as it had been rejected by the MRC 'Neurosciences and Mental Health' panel, a panel predominantly made up of psychiatrists who, by not funding it, indicated that they did not appear to recognise the potential value of this novel field of research towards uncovering, at least in part, some of the basic aetiology of ME/cfs, despite the frequent lament that much is not yet known about the condition.

The same can be said of recent Cardiovascular research conducted by Prof Newton and Dr Jones at the University of Newcastle, who, as a result of the grossly abnormal findings they discovered in ME/cfs patients compared to healthy controls, strongly recommended that tilt table and cardiovascular/ANS testing be part of the standard work up to be included in NICE guidelines for all ME patients on the NHS.

Prof Wessely's reaction to this? He would be likely to disagree as he considers tilt table testing to be a rather unpleasant ordeal for orthostatically intolerant patients and therefore be avoided at all costs - this in spite of the fact that many ME/cfs patients have said they would be prepared to endure the extreme discomfort in order that they might be accurately diagnosed. It is dreadfully unpleasant, but so, it could be argued, is angiography for coronary artery disease patients for eg, muscle biopsy for related disorders, or explorative laparoscopy for patients with inflammatory digestive/gynaecological/obstetric complaints, and there does not appear to be any shortage of very ill patients signing up for those investigations.

In other words, I am not convinced that the potential groundbreaking value and usefulness of multiple areas of research outside the remit of neuropsychiatry/mental health, which may contribute significantly towards our basic understanding of ME/cfs, are being recognised by a grant panel that consists primarily of neurologists or neuropsychiatrists, under our current paradigm of streaming all ME/cfs grant proposals to the MRC into this limited area.

David

I recently saw a youtube clip of Dr Richard Dawkins address a passionate man about his religious rapture. In reply he said the man was hallucinating. The audience member was agahst - and implored Richard Dawkins to realise the reality of the holy spirit. Much to my amazement he replied again that the man was suffering from hallucinations.

My jaw dropped, I simply could not beleive the gall of the man. I have seen him tackle fundamental Muslims in similar robust ways. Personal beliefs aside, I shuddered at the thought of the contents of Richards Dawkins' email tray - how could he step outside the door having made a living doing this?

Yet I greatly admired the man. I have never seen him complain about his difficult life as an advocacy of atheism, in fact he makes light of the rabid hatred he faces -

If some of the Psychiatrists involved in researching M.E would do the same, come out and tell it like they think it is - that patients are suffering from delusions, instead of obfuscating the issue with undergraduate essays on the outdated nature of dualism, I night have similarly more respect.

And surely Professor Wesseley can see the irony in using an essay on the pitfalls of dualism, to support the use of psychotherapy above physical intervention - it so obviously betrays the hand.

Paul Daniels

Like Dr Tucker I also have some insight into the recently published PACE trial. As a result I would actually go further than Professor Wessely and call for an end to the separation of psychiatry and magicology.

Rob

@Dr Art Tukcer
August 26th, 2011 2:06pm

You have not read the PACE trial then.

Firstly, ME is neurological. The PACE trial used a criteria that excludes those with neurological signs and symptoms. As the authors of the trials have admitted, there were no ME patients in the study. That would be fine, but the authors claimed from the start they were going to use some ME patients. They didn't!

Secondly, the trial showed CBT and GET failed to effectively improve the health of those fatigued people. (Not ME patients) There was on average a subjective improvement of 8% when compare to the control group, who only saw a doctor about 3 times and got a leaflet. Objectively 0 and even a decline in the distance walked over 6 minutes.

The NICE guidelines are useful to no one and have no evidence base. Hardly surprising this is also the case with ME, when that disease has many decades ago already been proven to be physical as opposed to psychiatric.

Don't you agree we cannot afford to employ the people who subscribe to the Wessely Schools denial of the facts? They are not scientists, they don't conduct scientific studies and blew 8 million on a failed trial that did not include ME patients.

Mallin

Polly, you said about a clinic you attended sharing a waiting room with the gender clinic. You say it in a horribly downgrading way. Excuse me but trans people are people too. I was diagnosed with post-viral as a child, my girlfriend has ME and I also happen to be trans myself. Before you judge trans folk as somehow underneath everyone else, perhaps you should look at how gender dysphoria has been treated in the past. It is something which evidence suggests has a biological cause, but that has been hijacked by psychs in a way that means treatment is delayed. Delays which have caused depression and loss of life. I myself am have spiralled into depression which requires medication BECAUSE a psych caused delays in me seeing expert treatment.

I am saddened by the way that government seems more inclined to listen to psychs than doctors. It's a story of power that means that people aren't listening to each other and those with least power suffer the most. Whether they've ME, gender dysphoria or any number of other medical conditions.

lborgia

Simon Wessely seems to like attributing psychological aetiology to physical illnesses. Can't seem to keep his mitts off them, as Gulf War vets know only too well. But here we see that house of cards collapse too: http://www.meactionuk.org.uk/New-GWS-Treatment-Look-North-Hull-260811.wmv Is Mr Wessely getting a bit frantic in his old age, losing his grip on all these diseases he's tried to appropriate for himself? Is that why he's running around like a headless chicken from paper to paper defaming his own patients? Something's up for sure!

bella

When there is white noise - as Mr Wessley has created in the media this last month with his death threat stories - I wonder what other sounds are being drowned out. And why.

Perhaps the publication of the International Consensus Criteria on ME around the same time as these stories began being trumpetted from the media might be a clue.

The International Consensus Criteria on ME was created by experts from 13 countries, with over 400 years experience researching ME, and having treated over 50,000 patients with ME. They created this work without sponsorship of any kind. In it, they describe the physical abnormalities in ME patients and how these can be used diagnostically.

The independent minded among you can find out more here: http://www.hetalternatief.org/ME%20Carruthers%202011.pdf

mellster

Can Geico save you 15% or more on car insurance? Does ME/CFS have proven infectious origins? Case closed, please take CBT elsewhere..

Ernest Roberts

In her article "Storm brews over all in mind theory of ME" (20 September 2001), Sarah Boseley of The Guardian wrote that "Prof Wessely has quit the field".

Ten years later, in "Health in mind and body: bridging the gap" (available online, May 2011), Simon Wessely has discovered that "CFS" is "Perpetuated by behavioural and psychological factors".

Here, Simon Wessely modestly emphasises that "the treatments we pioneered ... 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".

It would be most interesting to learn from Professor Simon Wessely what it is that he believes "perpetuates" rheumatoid arthritis, Multiple Sclerosis, Parkinson’s and schizophrenia.

I am sure many experts in those fields would be most willing to learn from Professor Wessely's model, that there's no connection between the cause of a disease, infection in "CFS", and what "perpetuates" it, behaviour and psychology, and that in fact there's no connection between cause and effect.

It could also be a major revolution for the Department of Work and Pensions, the Insurance Industry, and other interested parties, who are so greatly interested in uncompromising science and logic.

In a recent article "Small Wins Matter in Advocacy Movements: Giving Voice to Patients" (available online), Leonard Jason, who has not quit the field, wrote that "There will continue to be social change efforts in the US and other countries to deal with these forums that trivialize CFS by portraying people with this serious chronic illness as being a form of hysteria ... social justice efforts are needed to focus on systemic change directed toward those responsible for creation of norms or policies that discriminate against or stigmatize marginalized groups such as those with the illness known as CFS".

Many other experts in this disease, who will not be quitting the field, that is to say those who suffer from it, would probably agree with Jason's analysis.

Justin Reilly, esq.

I agree totally with Ms. Kennedy's critique of Prof. Wessley, supra. Prof. Wessely has conducted a decades-long war on ME science and patients as documented in Prof. Malcolm Hooper's excellent publications including "Defiance of Science."

Irene Thorpe

Just in case Simon wishes to say otherwise below is an answer from a parliamentary question asking why The RCGP had included ME and CFS under mental illness.It confirms that ME and CFS are neurological illnesses

“Can the Minister explain to the House why the Royal College of General Practitioners continues to insist on categorising CFS as a mental illness?”. Lord Dazi replied: “The Government has made it clear that they consider that CFS/ME should be classified as a neurological condition. It is for professional bodies to look at the evidence base and I will encourage the Royal College of General Practitioners to look at the WHO classification which, as I said earlier, is that it is a neurological rather than a mental condition”.

Despite this recently the RCGP has issued GP with new guidance on CFS/ME and guess what its under mental health. Mrs Wessely happens to be chair of the RCGP

lborgia

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?

Irene Thorpe

So both WHO and our UK Government say ME and CFS are considered to be Neurological illnesses. Why then should I accept that I have a psychological illness just because Simon says so.

Irene Thorpe

Sir Liam Donaldson - BBC News 11 January 2002 “He said CFS/ME should be classed as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease”. On 12th June 2002 (Hansard: Column 973), in welcoming the then new Under Secretary of State for Health (Mr David Lammy MP), John Bercow MP (now The Speaker) pointed out to the Secretary of State: “In the House since 1997, interest in ME or chronic fatigue syndrome has been manifested in no fewer than 116 written and oral parliamentary questions; a number of early day motions…and several Adjournment debates”.
Mr Bercow continued: “There has been a long-standing argument about the cause of ME or chronic fatigue syndrome, but about its appalling symptoms and consequences there can be no doubt….It is severe and potentially disabling….The House and the wider public must understand that ME sufferers experience sheer exhaustion and excruciating pain. Those are often the daily endurances and harrowing ordeals of sufferers….There is an overriding need…for more research, not least into the physical causes of the affliction….We now have the endorsement of the chief medical officer, Sir Liam Donaldson, for the proposition that this is a recognised disease”.
Mr Bercow was asked by Mr Russell Brown MP: “Does the Hon Gentleman believe that great problems remain locally because some GPs continue to fail to recognise ME as an illness?”,
to which Mr Bercow replied:“I do….the Government should not only provide advice and communicate the new culture to GPs but put their foot up the backside of those who have consistently misunderstood and displayed insensitivity towards people suffering badly….The issue is too big for political games”.
The new Parliamentary Under Secretary of State replied: “I want to make it absolutely clear that the Government endorse the view of the working group that this is a chronic illness. Health and social care professions should recognise it as such….Research has demonstrated immune, musculoskeletal and neurological abnormalities”

Irene Thorpe

ME does have proven Infectious causes. The British Medical journal wrote in the 1960's that the infectious component of ME could be transferred to monkeys and recent work by Jill Belch in Scotland who has studied both adults and children and come up with the same conclusion that their immune system profiles are suggestive of an ongoing infection. It is very wrong to suggest that because the infectious agent has not yet been discovered that we should call ME a psychological illness unless proved otherwise. Facts are facts and The WHO recognise both ME and post viral fatigue syndrome(there is a clue there) as a neurological illness. Many other illness do not have known cause just biomarkers to show something is happening in the body.We have that same evidence in ME science it is just being ignored by Wessely and friends. He is in the minority here and he is ignoring the science and the law

Bert Alexander

In 2003 an international team published the ME/CFS Clinical Working Case Definition Diagnostic and Treatment Protocols in which they refer to Simon Wessely and UK colleagues "far from being confirmed" hypothesis, pointing out that: "there is much that is objectionable in the very value-laden hypothesis ... the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient’s autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment".

As previously mentioned, an update was published in the Journal of Internal Medicine in July this year titled "Myalgic Encephalomyelitis: International Consensus Criteria".

It is perfectly understandable that professional criticism can be upsetting, but rather than "internet extremists ... outraged minority ... malign tactics of the minority ... threatening emails and blogs ... insidious stuff ... bogus allegations ... ridiculous claims ... deliberate falsification ...", it would have been much more helpful and informative had Simon Wessely mentioned the recent publication of the International Consensus Criteria.

Mairi

I am over 60 years old and have lived long enough to have witnessed other struggles for recognition and justice. MS was just such a one that captured the attention years ago, with their poster campaign depicting the ravages this disease could cause. They had to do it because of the psychosomatic label attached to them at the time by the psychiatric establishment, negligee disease, duvet disease and other such maligning terms were levelled at them and they suffered the mistreatment and neglect that inevitably goes along with that.

Then there was the ulcer wars, stress was the cause of stomach ulcers and, (or so they said) and was again firmly in the domain of the Psychiatrists. It was the patient’s fault, for doing stressful things. People suffered a horrible fate unable to eat, having parts of their stomachs or all of it removed (I remember it well). Then along came Dr Barry Marshall who proved it was caused by bacteria in the stomach (Helicobactor Pylori), he was laughed at and side-lined, until 10 years later out of frustration at the lack of acceptance and progress, he made himself very ill by drinking the bacteria himself and writing his findings up in a medical paper.

Later there was the fight over repetitive strain injury this again was a problem that didn’t exist, a psychological problem. People imagined they were in pain, or were making it up to get time off work. This too was a battle that raged in the papers and was hard won over several years. Why, because companies didn’t want to give their employees better working conditions and insurance companies didn’t want to pay out.
Gulf war syndrome came next with the disgraceful slur on the character of these once so fit men who became so ill after their time in the gulf. These very sick men have had to fight a long, protracted battle, lasting decades, for recognition against psychiatric misdiagnosis and misrepresentation resulting in withholding of their benefits and pensions.

I was 38 when I and three of my children fell ill with ME in the 80s. I was appalled when I realise that the tragic circumstances we found ourselves in were not going to be taken seriously and that we were going to be brushed aside, left isolated and neglected because the psychiatric establishment had decided ME was mass hysteria. At least, I thought, we had time on our side, but over twenty years later we are still ill my children’s lives have been ruined and ME is no further forward.

But in all my years I have never witnessed anything like the abuse story that Simon Wessely, Easther Crawley and Myra McClure have just launched, to malign an entire community. Don’t they sign a document when they become doctors to do no harm? I find it quite extraordinary that this man could lead such an attack on a community of a quarter of a million sick and defenceless patients. He has turned everything on its head, now they are the victims not the patients.

Not only are they accusing the handful of people who overreact on the internet etc., (other sympathetic researchers understand patients distress and routinely ignore this) but everyone who has criticised them in any way, conducted biomedical research into ME or legitimately campaigned for the recognition of ME. And now just to follow it all up, there is implicit in this latest article a threat that he can affect the ME listing in the neurological category of the world health organisation.

Peter Kemp

Recent articles in the British Medical Journal, the Times and Sunday Times, Observer, Guardian, Spectator etc., have highlighted “death threats” directed at Professor Simon Wessely. Wessely claims these threats are from M.E. patient activists. He also claims he is so frightened by these threats that he feels safer when he is in Iraq or Afghanistan than in the UK. He adds that he is not joking, but is he serious?

In 2006 Wessely spoke at Gresham College about Gulf War Syndrome. The late Gurli Bagnal remarked (1): ‘“One of the first points Simon made, was that he was a little nervous because he had (quote): “received some intimidatory threats suggesting that it would be wise for me not to give the lecture…” Under these circumstances, some of those who attended the lecture were surprised that he brought along his son who apparently was very visible during the event. It would surely have been safer to leave the boy at home.”’

The OneClickGroup (2) observed: “Wessely claimed he had received "intimidatory" emails, and had reason to believe he would be physically attacked. This, he said, was why he considered not turning up, but he had changed his mind at the last moment.” This raises the question, why did he take his son with him, a youngster whom spectators noted was a boy of about 14 years old?

What parent, believing they were going into a potentially dangerous situation would permit their child to accompany them? I cannot think of a single good reason to do such a thing. Perhaps he took his son for protection, believing that an aggressive person would balk at violent action in front of a child? Perhaps he had exaggerated the threat to give his persona machismo? I cannot think of a reason that does not imply either putting a child’s safety at risk or catastrophizing a threat for self-serving purposes.

If this well documented incident is typical of the threats Wessely claims to receive then it raises the question of how serious such threats actually are and how seriously Wessely himself takes them.

There are many people working in professions where threats and actual physical assaults occur. As well as police officers, ambulance staff and doctors and nurses working in Accident and Emergency sometimes have to deal with unruly, drunken and violent patients; some mental health professionals including psychiatrists, “rationalize that violence is an occupational hazard” (3); bus drivers are subject to verbal and physical assaults (4), almost one-third of traffic wardens experienced physical assault in a period of 12 months and 10% were attacked or threatened with a weapon (5); 90% of social workers have suffered abuse, assaults and threats (6); teachers suffer from abuse, threats, assaults and sexual assaults (7-9)… the list could go on.

I am not aware of any incident of Professor Wessely being physically assaulted by an M.E. patient or patient advocate. So why is Wessely so frightened that he feels safer in Iraq or Afghanistan than here in Britain? His claims about ‘death threats’ do not make sense. If he is genuinely frightened then why would he risk provoking those dangerous people with his statements in the media? And if he is not really frightened then what is his motive in seeking such publicity? Perhaps instead of x-raying his mail they ought to x-ray his head – there might be a screw loose.

References
1. http://www.meactionuk.org.uk/Matters_Arising_by_Gurli_Bganall_050206.pdf
2. http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/The%20Simon%20Wessely%20Protest.doc
3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074201/
4. http://www.hse.gov.uk/violence/hslcasestudies/first.htm
5. http://sprinttelematics.wordpress.com/2010/06/15/violence-against-traffic-wardens/
6. http://www.communitycare.co.uk/static-pages/articles/violence/
7. http://www.guardian.co.uk/education/2010/mar/29/violent-students-schools-teachers
8. http://www.google.co.uk/url?sa=t&source=web&cd=7&ved=0CF8QFjAG&url=http%3A%2F%2Fedinburghnews.scotsman.com%2Fteaching%2F646-incidents-of-violence-against.6298994.jp&ei=9NlYTszXE4ex8QPd6IyMDA&usg=AFQjCNFQc_0Au4hnynl8-muGjzZkqUWtfg
9. http://www.google.co.uk/url?sa=t&source=web&cd=3&ved=0CEEQFjAC&url=http%3A%2F%2Fteachersupport.info%2Fnews%2Fwell-being%2FShocking-violence-against-teachers.php&ei=9NlYTszXE4ex8QPd6IyMDA&usg=AFQjCNHCtY1eSY7oGimvEzgz_ChCvDL1Dg

Mary Schweitzer

I was a tenured and published university professor before I was felled by this disease in 1994. An educator should at least offer the opportunity for educating readers about a problem, so here are my suggestions for how to start to learn about the severity of the invisible and misportrayed illness, Myalgic Encephalomyelitis (M.E.).

Let me suggest the website dedicated to the late Sophia Mirza by her mother

http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html

The "twenty-five percenters," a group of patients with M.E, that even the psychiatrists admit they can't help, who are extraordinarily sick. The name comes from studies that indicate 25% of those with M.E. are housebound and/or bedridden.

http://www.25megroup.org/home.html

Greg Crowhurst's You-tube videos of his wife - start with this one;

http://www.youtube.com/watch?v=LGsHr3x9pVE&feature=youtube_gdata_player

And I have recently written an essay about this strange media orgy of accusations against people with M.E.

http://slightlyalive.blogspot.com/

Let me repeat: anyone who is physically threatened should go to the police. Why did they go to the press instead?

Mary M. Schweitzer, Ph.D.

Sarah Lawry

Perhaps Prof W would like to explain how none of the contamination theories regarding retrovirus XMRV have been proven? Would he also like to take the opportunity to give sufferers of ME and the general public an up to date appraisal of work in his area of expertise - polytropic and modified polytropic MRVs? His expert opinion would, doubtless, be very interesting. If he is unable, I'd be delighted to have a go. I'd be even more delighted if a UK journalist could do it. Ooh, sorry, must stop whinging. 31 years of not being heard, being dismissed and neglected by NHS etc, despite having dutifully provided the data that Prof W chooses to ignore - brain lesions, muscle abnormalities, heart damage, massive inflammation, hideously high viral titres etc. Is there a medically qualified person reading this that would suggest I exercise myself better? Yes? Maybe take the time to read what many of the real experts in this neurological illness KNOW about exercise and ME. We need healthy folk to help end this farce, we are too debilitated to do it alone.

http://carersfight.blogspot.com/2010/03/101-good-reasons.html?spref=fb

Sarah Lawry

Perhaps Prof W would like to explain how none of the contamination theories regarding retrovirus XMRV have been proven? Would he also like to take the opportunity to give sufferers of ME and the general public an up to date appraisal of work in his area of expertise - polytropic and modified polytropic MRVs? His expert opinion would, doubtless, be very interesting. If he is unable, I'd be delighted to have a go. I'd be even more delighted if a UK journalist could do it. Ooh, sorry, must stop whinging. 31 years of not being heard, being dismissed and neglected by NHS etc, despite having dutifully provided the data that Prof W chooses to ignore - brain lesions, muscle abnormalities, heart damage, massive inflammation, hideously high viral titres etc. Is there a medically qualified person reading this that would suggest I exercise myself better? Yes? Maybe take the time to read what many of the real experts in this neurological illness KNOW about exercise and ME. We need healthy folk to help end this farce, we are too debilitated to do it alone.

http://carersfight.blogspot.com/2010/03/101-good-reasons.html?spref=fb

Sarah Lawry

Perhaps Prof W would like to explain how none of the contamination theories regarding retrovirus XMRV have been proven? Would he also like to take the opportunity to give sufferers of ME and the general public an up to date appraisal of work in his area of expertise - polytropic and modified polytropic MRVs? His expert opinion would, doubtless, be very interesting. If he is unable, I'd be delighted to have a go. I'd be even more delighted if a UK journalist could do it. Ooh, sorry, must stop whinging. 31 years of not being heard, being dismissed and neglected by NHS etc, despite having dutifully provided the data that Prof W chooses to ignore - brain lesions, muscle abnormalities, heart damage, massive inflammation, hideously high viral titres etc. Is there a medically qualified person reading this that would suggest I exercise myself better? Yes? Maybe take the time to read what many of the real experts in this neurological illness KNOW about exercise and ME. We need healthy folk to help end this farce, we are too debilitated to do it alone.

http://carersfight.blogspot.com/2010/03/101-good-reasons.html?spref=fb

Ernest Roberts

Following an attempt to capture "CFS" as a "mental disorder", and the last rather public rebuke on breaching rules of classification issued by Andre l'Hours at the WHO in 2004, Professor Wessely wrote: "Whats in a classification? The question of the World Health Organisation (WHO) International Classification of Diseases (ICD) and the WHO Primary Care guide has excited some controversy in certain quarters, although not, it is fair to say, in the medical profession.. For most conditions, and most professionals, ICD codes barely enter into their lives. What matters is what is the cause of an illness, not an ICD code.. the question of classification and the WHO is a storm in a teacup. It excites no division, controversy or even discussion in the medical literature.. We are perfectly happy with the status quo. There is no pressure from here or anywhere else to alter the current definitions, and we find it hard to see it as such an important issue.." (strangely deleted from Kings College website, but still available in public archives).

Now Professor Wessely wants The World Health Organisation to "think seriously about.. merging psychiatry and neurology into one category".

Quite a gap to mind.

nasim marie jafry

'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.'

Simon is very good at creating narratives, he really should write fiction. I would suggest an alternative narrative: he and his CBT/GET disciples and their myopic, blinkered tactics have effectively shoved other researchers out of the way by hoovering up all UK government funding. And the biomedical research that is going on in UK and abroad he simply covers his eyes and ears to. And if he is so keen on attracting other disciplines to ME - as he stated in a BMJ podcast last year, sounding very relaxed and 'unthreatened' , incidentally, no mention of unhinged patients chasing him - why does he insist on being centre stage week after week after week as if he is a Nobel prize winner?

I swear once we get our biomarker - and we will! - he'll still be shrieking in the corner about false illness beliefs and 'metaphors for our times'. He just seems to love the attention.

wisden

Dr Art Tukcer August 26th, 2011 2:06pm
"I am very familiar with the PACE study and the ethics behind the project (approval, complaints and appeals) I applaud and support the research team in the face of aggressive, misleading and factually inaccurate reporting. ... The significant fact to consider is that each patient had given informed consent to participate."

Dr Tucker, As a member of the ethics committee, did you ensure that recruits were fully informed of the principal investigators' links with the insurance industry and the DWP, before they gave their consent to take part? If not, can you explain why not?

"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."

And Prof Wessely, for the record, please note that a straightforward question about the extent of the information provided to PACE recruits does not imply you or your colleagues are 'pawns' of the insurance industry.

wisden

Hello... my previous comment should have appeared automatically.

Veronica Jones

The MRC, after many years of giving millions to psychiatrist Simon Wessely and his team to research CFS, has at last earmarked funds for *biomedical* research and is currently looking for new researchers.
Simon Wessely chooses this time to conduct a media campaign depicting research in this field as highly dangerous, saying he felt safer in Afghanistan (despite no evidence of any prosecutions).
Now in this latest article he wants psychiatry to be considered biomedical too!
Interesting timing!

Rita Joy

I do note that you did not have the courage to post up my comments of two days ago. Perhaps you cannot handle the Truth? I do know, and have had itconfirmed that, as I do have all my Medical Records, and have uncovered so very much, I am not libelling anyone, BECAUSE IT IS THE TRUTH. Would you now like to reconsider my offer for multiple physical testing as listed in my first comment

nasim marie jafry

http://www.transfusionguidelines.org.uk/index.aspx?pageid=6287§ion=8&publication=STD&Highlight=fatigue

Current status for blood and live tissue donation for ME/Post-Viral Syndrome: MUST NOT DONATE.

Margaret Wakefield Wallace

Disclaimer: I am an ME patient who has been ill for 19 years.

Something I don't recall seeing highlighted in all of this recent media frenzy about Professor Wessely's statements about threats to himself and the associated online comments is some of the cost of ME/CFS. To patients this is crucial.

As severely disabled people we often apply for DLA to mitigate the costs of living with our disability - as do most disabled people with neurological illness such as MS which is similar in its effects on the person.

By labelling ME as a psychological condition (somatization is a common label that psychiatrists like Professor Wessely would like to use) the government is able to refuse to pay out the higher rates of DLA for both care and mobility.

I suspect that the new "PIP" that will replace DLA soon will make things even worse for both ME/CFS patients and those people who are unfortunate enough to suffer from Depression and other illness currently regarded as "psychiatric".

Ernest Roberts

Peter Kemp wrote (above): "His claims about ‘death threats’ do not make sense"

You can view the Gresham talk by Simon Wessely here: http://tinyurl.com/3kujkqd

Towards the end Professor Wessely says:

"It's interesting because that's the 7 Tram, that happens to be my house just there, and this is the Dog House Pub just there, wasn't then but it is now, and as soon as this lecture is over that is in fact where I shall be going".

Clearly, there's much more to this "story" than meets the eye.

lborgia

Interesting turn of events at The Observer: (Posting with permission to repost):

This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie "Chronic fatigue syndrome researchers face death threats from militants", published on Sunday the 21st of August 2011, http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis/print

Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.

The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.

He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.

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.

Malcolm Hooper

Permission to repost.

lborgia

More from Prof Hooper..the rejected longer article for The Observer. Please note the permission to repost and the entreaty at the end which is pertinent to moderators of this page:
Professor Hooper has given permission for this longer article he submitted to the Observer to be made public:

http://www.meactionuk.org.uk/Response-to-Observer-article.htm

Observer article about Professor Wessely's allegations of death threats:
Professor Hooper's response

25th August 2011

No right-minded person could condone any campaign of vilification against scientists ("Chronic fatigue syndrome researchers face death threats from militants"; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years.

No matter what the degree of provocation, it is indefensible to liken people with myalgic encephalomyelitis (ME) to the Animal Liberation Front extremists. This will create a further tidal wave of loathing against them. It is an inexcusable attack on the whole ME community, not just on those few people who may have behaved irrationally. It might be thought that, of all people, psychiatrists would know how to recognise and deal with unbalanced behaviour instead of exploiting it.

Wessely says he is concerned that such behaviour is putting off researchers but it is he who is putting them off by his endless purveying of so much negative publicity about people with ME. He perpetuates the dismissive, often contemptuous, attitude of many healthcare professionals toward those with the disease.

The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic "fatigue" (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families.

Even though the World Health Organisation has classified ME as a neurological disorder since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.

There are about 250,000 ME patients in the UK. By comparison, there are about 83,000 people in the UK suffering from multiple sclerosis, yet the far larger numbers of ME patients coping with an equally serious neurological disorder are not only denied both medical and social support but are ridiculed, mocked, disbelieved, derided and abused by those charged with their medical and social care.

Dr John Greensmith noted in a letter to The Scotsman (when Wessely was making the same claims of vilification by patients seven years ago): "It is deplorable if he has been so treated, no matter how controversial his views. It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is".

There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the "Wessely School").

Most of them work for the medical and permanent health insurance industry. The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control. In 1994, Wessely went on record about the industry's concerns: "By 1990 insurance and disability claims (for ME) were doubling every year". There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a "functional" (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.

Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely's wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions, making it difficult for them to claim State benefits, with the financial support necessary for basic survival being ruthlessly withdrawn. Many very sick and destitute ME patients have had no alternative but to commit suicide, rates of which in ME are known to be higher than average (sadly, a fact does little to mitigate the charge that they were "mental malingerers").

The Wessely School's blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.

The Wessely School's endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, as the many doctors, nurses, medical scientists, lawyers, teachers, and others who have lost their valued careers, salaries, homes, marriages and even families because of ME will readily confirm) has created a climate of disgust for patients with ME, giving rise to such banner headlines as "GPs despise the ME generation" published in the medical trade magazine "GP Medicine". Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.

The Wessely School insist that they can cure ME by "cognitive restructuring" (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise (one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).

What is ME?

ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.

There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.

The muscles of people with ME have been shown to take much longer to recover from minimal exercise. Direct impairments in oxygen delivery have been clearly demonstrated. Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance.

There are more abnormal genes in ME than in cancer: there is compelling evidence linking ME with exposure to environmental toxins and chemical warfare agents. Gene expression research has demonstrated 16 genes as having an expression profile associated with ME. Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system. The researchers specifically pointed out the association of organophosphates (which include household pesticides) and chemical warfare agents with the damaged genes.

Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.

He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.

At a press briefing in the United States on 3rd November 2006, ME was described by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME expert as "this terrible illness".

People die from ME and UK coroners have recorded it as a cause of death.

Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: "Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients".

However, when in 2002 the UK Chief Medical Officer publicly stated that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease, the British Medical Journal quoted Professor Michael Sharpe responding by saying that just because the CMO says something, it doesn't mean that doctors will pay any attention.

The Wessely School's published views about people with ME

Since about 1987 the Wessely School have consistently rejected the biomedical evidence of serious organic pathology in ME.

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".

For those who want or need to find out about the published organic pathology in ME, a summary of the biomedical abnormalities can found in Section 2 of "Magical Medicine: How to Make a Disease Disappear" (http:///www.meactionuk.org.uk/magical-medicine.htm) and those who want a fully referenced account of what the Wessely School and the insurance industry are really up to can read the rest of the 442 page report.

The Wessely School's dismissal and rejection of the biomedical evidence on ME has continued unabated. It was not the fact that UK scientists such as Professor Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients by US researchers that caused such an eruption of anger within the ME community: it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME and the medical scientists and clinicians who are striving to help them.

Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see "Quotable Quotes about ME/CFS": http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf).

The views of the Wessely School about ME have repeatedly been shown by medical scientists of international repute to be completely wrong: the recently published International Consensus Criteria for ME produced by 26 world experts from 13 countries points to widespread inflammation and multisystemic neuropathology, consistent with the WHO classification of ME as a neurological disorder, of which the cardinal symptom is post-exertional nalaise. The authors state: "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measureable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology."

What is astonishing is that no NHS clinician has the autonomy to regard ME as a somatoform disorder because the WHO classifies it as a neurological disorder; the Department of Health has confirmed in writing that: "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".

Not only the Wessely School themselves but also many GPs and NHS neurologists are in breach of that mandate: in 2010, 84% of neurologists questioned stated that they do not believe that ME exists as a neurological condition.

Who is abusing whom?

For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is 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 and significant medical disorder with reproducible multiple systemic abnormalities is abusive.

This widespread abuse of ME patients continues unabated in the UK.

Robin McKie implies that it is these scientists themselves who are being abused by the very patients they are trying to help. If this is true – and if it is corroborated by the police and is not another public attack on people with ME so often used by the Wessely School in the past when yet more research appears that vitiates their own beliefs -- it is an entirely unacceptable state of affairs and must be condemned without reservation.

However, responsible journalists should exercise the requisite journalistic neutrality when reporting a "story" and report the whole issue, not just regurgitate uncritically what they are fed by those with well-established vested interests. McKie would do well to redress the balance by reporting the presentation by Catriona Courtier at the Royal Society of Medicine meeting in the "Medicine and me" series on 11th July 2009 in which she emphasised the scandalous situation faced by ME patients in the UK:

"Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated, that we are suffering, not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient's wishes.

"Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.

"I began by describing the severely affected as the weakest among us. In some ways they are the strongest… to live for many years with an illness like ME is a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to".

That patients with ME continue to be neither listened to, appropriately investigated nor correctly cared for but abused and effectively abandoned is believed by many to be the shameful legacy of the Wessely School.

Notes for Editors

1. All the above statements can be substantiated by literature references.
2. Much other information has been omitted purely for reasons of space; there are many harrowing stories, as documented by Natalie Boulton in her book "Lost Voices" and her DVD "Voices from the Shadows" that is to be shown at an international film festival in the autumn.

Irene Thorpe

I envisage that the next round of attacks will be on the antibody testing. The nay sayers are a little slow.. Dr lombardi has moved on even from notice he that he says it is the XMRV+ that have this low interferon.If it isnt XMRV they are picking up is is sure the hell something and if its antibody's to something else and normals arn't producing the same antibodys then this is where the research money should be going. The Psychos are running scared. I am so glad Bloomburg is on the case. Notice although he didn't get the result we wanted for ME research nobody had 'death threat' him,and he didn't abandon us, he worked with Judy et al until he sorted it... Don't these people realise its their personally disorder that the problem