CFS Myths

MISUNDERSTANDINGS AND MISPERCEPTIONS

In the companion essay I gave a swift whistle stop tour of my work in CFS. Perhaps I ought just to leave it there.  But unfortunately out there is an alternative reality, since it would naive of me to pretend that anyone who decides to look up my work “cold” via the internet, and not the journals, might stumble across some stuff that seems to be saying the opposite to what I have described above.

The reason is that for 20 years a very small group of people have targeted me and many of my colleagues because of our work on chronic fatigue syndrome.   This has involved their making a series of allegations portraying all of us as guilty of a vast range of nefarious conduct, and who are part of a spider’s wet of conspiracies, all designed to do down, denigrate and demean those with this illness.

So far, we rarely answer these allegations.  To do so gives them more credit than they deserve.  The impact of this constant drip of allegation, distortion, innuendo and guilt by association has been minimal within medicine and science, unless one includes scientists who have been dissuaded from getting involved as a result.   Most people immediately spot all this stuff for what it is.  And all of us have better things to do with our time than respond to it, especially given that the material runs to dozens and dozens of different pieces, many of them 400 hundred pages long, and nearly all of it coming from the same handful of people.

So why break the habits of a life-time?  The problem is that many people do not have ready access to the real evidence (by which I mean what myself and my colleagues have actually written, not what these people say we have written).  So I have decided to address just a few of these unpleasant allegations, for the benefit of those who wish to know the truth.  For those interest in a more forensic dissection of how quotes from one of our papers can be manipulated and distorted see the following discussion on the Bad Science forum.

Allegation: “In 1989 Wessely abused his position on the Medical Research Council (MRC) to ensure that £1,000,000 of ring-fenced money went to his friends at the Institute of Psychiatry”
The reality: The IOP was awarded a grant of £95,000 for work into postviral fatigue syndrome in 1989.   I was not part of this grant. I did not join an MRC Board until 1998. It would always have been impossible for me to have anything to do with any matter concerning my own institution.

Allegation: “All the MRC money for CFS has gone to Wessely”
The reality: I have so far received 67 grants, five of which were from the MRC.  Only one of these was related to CFS .  I was not the principal investigator (PI), the total amount was £150,000, and none of it came to my department/institution, but to the department of the PI.  All of this can be easily checked via the MRC Annual Reports.

Allegation:  “Wessely blocks the MRC from funding biomedical research into ME”.
The reality: Between 1998 and 2002 I was a member of the Neurosciences Panel, which was the principal body for allocating funds in neurosciences and mental health. During that time I don’t recall seeing a single application for biomedical research into CFS/ME.  It is possible that there were, and I have no recollection of them if so.  As it is, applications for work in areas such as virology, immunology, physiology, biochemistry, proteonomics etc. would have gone to another panel anyway.

Allegation: “The patients that are seen at King’s don’t have CFS and/or ME.
The reality: This is not so much insulting to me and my colleagues, but to the patients that we see.  Here is our response to this claim, published last year in PLOS One.

“Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere. We refute the suggestion that our patients are in some way more “psychiatric”, whatever that means, than those with “real CFS”, an assertion that has been repeatedly made in other venues.

The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere. We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion.” PLOSONE ANN.

Allegation: “Their patients do not show abnormalities on laboratory testing, unlike genuine ME patients.
The reality: Here is our response in the same paper.

“In addition we also perform tests as part of research protocols. We always tell patients that these additional tests and investigations are not necessary clinically, and are performed with informed consent. Thus patients in our service have also co-operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti-nuclear antibodies, immune function, neuroendocrine function and genetics (see references).

“Hence it is untrue to state that patients at King’s for example do not show alterations in immune function – in fact they do – see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome.” Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.

“As the publications list shows, we have pushed multiple studies that look for biomarkers for CFS, and have found positive findings of both neuroendocrine and immunological dysfunction.  Unfortunately none of these are specific enough to serve as a diagnostic test.”

Allegation: “Wessely threw a boy into a swimming pool to see whether he would sink or swim”.
The reality: In 1988 I was a senior registrar in psychiatry at the National Hospital for Neurology. A child had been admitted unable to walk or speak.  I was asked to assess him as part of my regular duties, which I did.  My intervention was to get him transferred as rapidly as possible from the ward on which he was, which was an adult ward largely full of people with advanced neurological diseases such as motor neuron disease and multiple sclerosis, and get him admitted to Great Ormond Street hospital next door.  I did not see the child again. Some month later I was asked by social services to provide a report to support the care proceedings that had been brought by child protection services elsewhere, which I did.  Needless to say, I have never thrown this child, or any other, into a swimming pool.

Allegation: “Wessely is an officer/paid employee/advisor/share holder/board members etc. for UNUM” The reality: I have never worked for UNUM, an insurance company. I have never advised them, never owned any shares, never been on a board.  I have given two talks for UNUM. One was in London in 1995 and was about CFS, the other was in 2007 and wasn’t.

Allegation: “Wessely worked for PRISMA”. The reality: PRISMA was a small German company that was providing rehabilitation services for people on long term permanent health insurance, including CFS. I joined their supervisory board in 1999, because they wanted to set up a research programme. This is similar to being a non executive director in a UK company. I attended two board meetings in Germany, for which I received expenses. After about a year or so it became clear that they were not going to do research, so I resigned. I have had no connection with them for the last decade.  All of this was declared in my publications at the time.

Allegation: “Wessely advises the Department of Work and Pensions and as a result patients are denied benefits”
The reality: This is the response from the Department of Work and Pensions when the above allegation was made:
“Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment”.

In 2012 a letter surfaced in the National Archives that I wrote in 1992 to the Chief Medical Officer of what was then the Department of Social Security, on the subject of CFS in which I was lobbying for a change in Disablement Living Allowance guidelines on CFS. I had forgotten about this letter, and it is attached here for completeness.  It is clear that I was supporting patients and writing at the request of  one of the patient charities, arguing that the proposed changes might harm sufferers.
DWP LETTER 1992

MISQUOTATIONS AND DISTORTIONS.
One of the principal tactics that has been used against me and many of my colleagues is to manipulate quotes from our writings in order to reverse the meanings and show us in an unattractive light.  Here follows a few examples of such distortions, all coming from the same sources. I have added the emphasis so you can see where the quote actually is.

“Wessely says that ME patients are neurotic and he will often be disgusted with them”
Here is the full quote, from a chapter I wrote in a WHO book in 1990.
“The absence of abnormal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: “the average doctors will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible” (Alvarez, 1935). Thus, attitudes towards psychiatric illness affect both patient and doctor with equally adverse effects on prognosis”

I was quoting Walter Alvarez, a physician at the Mayo Clinic in 1935. He disproved of the way in many patients presenting with what would now be called CFS were dealt with, and continued  “and yet these poor people suffer the tortures of the damned”.  I was suggesting that nothing much had changed over the years to 1990, and the harm that this does to patients, that having no abnormal tests does not mean that nothing is wrong, and that doctors must always treat sufferers with respect.
“Wessely views ME patients as an unavoidable, untreatable and unattractive burden”
Here is the full quote

Patients with inexplicable physical symptoms are generally viewed as an unavoidable, untreatable and unattractive burden.  However, by adopting an approach that considers physical, psychological and environmental factors it becomes possible to make sense of at least some of the symptoms.  With improved communications, a therapeutic relationship may be developed which permits the introduction of techniques to reduce the patient’s symptoms, distress and disability , in other words to practice medicine which allows change to be brought about” ((Brit J Hosp Med 1994:51:8:421-427)

“Wessely views CFS patients as foolish, uncomprehending, hysterical or malingering”
Here is the full quote again so you can see the context:
“The causes of many health problems remain a mystery despite the advances of modern medicine. When a medical explanation is slow in coming, patients often infer that events (and perhaps people) are responsible for their condition. They may then judge harshly anyone who does not take their condition and inferences seriously. Physicians, officials, and companies often bear the brunt of this anger. For example, in the controversies surrounding chronic fatigue syndrome, Gulf war sickness, and cancer clusters, authorities who denied sufferers’ claims met with scorn and contempt.

Patients naturally want explanations and treatments for their ill health. Professionals, on the other hand, want to be sure about the diagnosis before acting, fearing the monetary and health costs of treating hypothetical conditions. But however justified hesitation may be medically, it can seem callous to patients. They may begin to doubt the integrity of doctors and see them as indifferent to their plight. The ensuing anger of patients will add to the mutual misunderstanding. No one wants to be distrusted. It is therefore only human for doctors and scientists to want to pull back from a hostile public or to view the public as foolish, uncomprehending, hysterical, or malingering. If such professionals speak less, or less respectfully, to the public, their credibility may decline further. They may eventually avoid health problems associated with hostile patients, expensive lawsuits, and government inquiries. This allows opportunists to fill the void, fanning patients’ discontent and hawking dubious remedies.  ((BMJ 2003:326:595-597)

“Wessely believes CFS Is a Non Disease”
Here is the claim, again from the same sources as before:  “In summary, Simon Wessely is on record as affirming that ME is a “myth” and a “non-existent disease”: between February and April 2002 the BMJ ran a poll of “non-diseases” with which Wessely is widely known to have been involved and to have proposed ME as a “non-disease”..

I had nothing to do with the poll or choice of subject, nor did I suggest ME or CFS as a non disease.  I wrote a letter in response arguing the opposite, this is its conclusion:
“But more commonly the act of giving a name to symptoms and disability brings relief. The acknowledgement by the medical profession that a patient’s condition has a name and is a legitimate illness is immensely reassuring and enabling. It also ends the battle of diagnosis—“If you have to prove you are ill you can’t get well.”.  Giving a condition a name is an intervention in itself with costs and benefits. Crudely handled, medicalisation can perpetuate disability and exclusion. But used constructively and appropriately it is the first step towards recovery” BMJ EXTRACT