Royal College's Report on CFS (1996)

[Glycon]

There's that bloody Horton, hijacking the agenda and distorting the debate.

Richard Horton. Young man. Borderline psychopath.

 

[RogerBlack]

How old are White and Wesley?
Though they are probably unlikely to retire at the 'normal' retiral age.

 

[Keith Geraghty]

there is a clear chronology that is easy to follow

late 1980s, Wessely is a junior doctor looking to do research - he stumbles upon ME patients in neurology clinics - so he does a thesis on them
- helped by his mentors and having a desire to do psychiatry he develops a model of ME as an affective disorder with somatisation - which he re-classifies a form of neurasthenia/somatoform syndrome (chronic fatigue syndrome) - helped by CDC use of this term.
- he gets together with colleagues in London and Oxford to look to promote this view
- he writes to DSS (DWP) in the early 1990s circa, 1992-1993 expressing his concern that ME is to be classifed as an neurological illness by the social benefits agencies in the UK
- this is critical, in his letters Wessely dangles the carrot in front of the Gov DSS head (Prof Alyward Mansel) that if the DSS goes ahead and uses the neurological classification, they may be deluged with sickness claims and patients with ME would stay sicker for longer, taking advantage of this classification
- Mansel writes back to Wessely inviting him to meetings the DSS is holding - this is when Wessely begins to rise in promience
- Wessely then works with Royal College of Physicans to draft his ideas on what CFS should be and how it should be treated and studied

the rest is pretty much history - Wessely moves to Institute of Psychiatry, next to Kings and rises up the ranks with his ideas on CFS -- as he goes up he recruits others, gets funding and the whole enterprise increases
he and his coleagues hold great positions of power and seek to influence the entire medical profession, both in psychiatry, primary care (with his wife Chair of a GP group), and medicine generally, UK, US and EU, about the BPS model and CFS and other illnesses

fast forward 20 years - PACE - Wessely helps design the study and his junior colleagues (now senior) Chalder, White, Sharpe and others are PIs of the study, Wessely helps administer the trial at Kings, and guess who is on one of the trial's oversight committees - Prof. Alyward Mansel, oh yes, that follow up meeting at the DSS between Alyward and Mansel has lasted 20 years, right up to PACE.

Its one of the most extraordinary examples of professional group think and power networking I have ever come across in my life.

Now we all have to do our best to do better research and collect better data - thats what Wessely advised me the day before yesterday.

He also said I was spreading erroneous allegations - thats what he says about anyone who dares to bring the facts up the public view; they are a small minority of anti-psychiatry militants, bent on stopping good science. This is the narrative Wessely and his colleagues have used sucessfully over 20 years, helped by their PR centre, the Science Media Centre, to dismiss any crtics of them or their research.

Lets go forward and do better research.

 

[worldbackwards]

How old are White and Wesley?
Though they are probably unlikely to retire at the 'normal' retiral age.

They'll never die. Their work is already undead, I'm sure they intend to follow suit.

 

[CCC]

Its one of the most extraordinary examples of professional group think and power networking I have ever come across in my life.

Sadly, it's completely normal for research. Research/adademia/science politics can be brutal. There are careers and external funding and reputations at stake here.

 

[BurnA]

Its one of the most extraordinary examples of professional group think and power networking I have ever come across in my life.

Could you write a paper about it ?

 

[Kati]

there is a clear chronology that is easy to follow

late 1980s, Wessely is a junior doctor looking to do research - he stumbles upon ME patients in neurology clinics - so he does a thesis on them
- helped by his mentors and having a desire to do psychiatry he develops a model of ME as an affective disorder with somatisation - which he re-classifies a form of neurasthenia/somatoform syndrome (chronic fatigue syndrome) - helped by CDC use of this term.
- he gets together with colleagues in London and Oxford to look to promote this view
- he writes to DSS (DWP) in the early 1990s circa, 1992-1993 expressing his concern that ME is to be classifed as an neurological illness by the social benefits agencies in the UK
- this is critical, in his letters Wessely dangles the carrot in front of the Gov DSS head (Prof Alyward Mansel) that if the DSS goes ahead and uses the neurological classification, they may be deluged with sickness claims and patients with ME would stay sicker for longer, taking advantage of this classification
- Mansel writes back to Wessely inviting him to meetings the DSS is holding - this is when Wessely begins to rise in promience
- Wessely then works with Royal College of Physicans to draft his ideas on what CFS should be and how it should be treated and studied

the rest is pretty much history - Wessely moves to Institute of Psychiatry, next to Kings and rises up the ranks with his ideas on CFS -- as he goes up he recruits others, gets funding and the whole enterprise increases
he and his coleagues hold great positions of power and seek to influence the entire medical profession, both in psychiatry, primary care (with his wife Chair of a GP group), and medicine generally, UK, US and EU, about the BPS model and CFS and other illnesses

fast forward 20 years - PACE - Wessely helps design the study and his junior colleagues (now senior) Chalder, White, Sharpe and others are PIs of the study, Wessely helps administer the trial at Kings, and guess who is on one of the trial's oversight committees - Prof. Alyward Mansel, oh yes, that follow up meeting at the DSS between Alyward and Mansel has lasted 20 years, right up to PACE.

Its one of the most extraordinary examples of professional group think and power networking I have ever come across in my life.

Now we all have to do our best to do better research and collect better data - thats what Wessely advised me the day before yesterday.

He also said I was spreading erroneous allegations - thats what he says about anyone who dares to bring the facts up the public view; they are a small minority of anti-psychiatry militants, bent on stopping good science. This is the narrative Wessely and his colleagues have used sucessfully over 20 years, helped by their PR centre, the Science Media Centre, to dismiss any crtics of them or their research.

Lets go forward and do better research.

We are truly fighting a monster. Thank you for highlighting this @Keith Geraghty

 

[Art Vandelay]

Sadly, it's completely normal for research. Research/adademia/science politics can be brutal. There are careers and external funding and reputations at stake here.

You're right. If you work in politics or government, you see examples of this all the time. Certain individuals, organisations or groups will lobby for government funding and/or favours and, upon getting it, grow into powerful leviathans of vested interests. They're almost impossible to strike down. The Wessely School is a perfect example of this phenomenon.

 

[Chrisb]

helped by his mentors and having a desire to do psychiatry he develops a model of ME as an affective disorder with somatisation -

This is an interesting part of the story. So far as I know Wessely's first paper on the subject was "Post viral Fatigue Syndrome: time for a new approach" published with David and Pelosi in 1988. Since first reading this I have always found the sentence in the conclusion of interest:

"We thank Dr Peter White for helpful advice. AJP (Pelosi) is supported by a Wellcome training fellowship in clinical epidemiology."

This makes it appear that White was an influence on Wessely, rather than the other way round. It would be helpful to have a better understanding of the beliefs circulating in the Maudsley at the time. The suspicion must be that the ramblings of McEvedy and Beard were highly influential within the department as a whole, and that it would perhaps have taken a more iconoclastic mind to break free of the influences of his teachers.

Sorry to bore on this subject, but I find it interesting to consider the point at which rationality lost out to the "endarkenment", as I read someone describe it.

 

[Keith Geraghty]

yes McEvedy and Beard's paper - both at Oxford, refuting Ramsay's work had a big impact in the late 1970s and really gave psychiatry a boost, as it was entering a dark phase as psychoanalysis came under scrutiny - at the very same time Engel's model and work of those at Penn University in the US was also taking off - so there was this marriage of convience, the biopsychosocial model and re-inventing psychiatry.

Whats interesting is that McEvedy and Beard said Ramsay was wrong - that ME was hysteria - yet they never interviewed any patients, they simply sat in their office in Oxford reviewing case notes. I must say there probably was an element of social hysteria around some viruses in the 70s, remember this was a cold war era and there was fear of biological weapons and so on - McEvedy and Beard dismissed many cluster out-breaks - Iceland, Los Angeles and so on

where they got it wrong was the Royal Free Disease - Ramsay actually followed up his patients and many remained ill for years.

In steps Wessely and White - who influenced whom is probably not too important - Wessely was most inflenced by his mentors no doubt, I think one was called Moses. Wessely and White quickly saw the potential for the BPS model and ME patients were the perfect candidates to test their emerging ideas on.

The meeting of minds between the Gov authorities in the DSS (welfare benefits) and Wessely - light the match in Wessely's mind; "we can argue that we can reduce benefits" -- hence funding and so on that followed

the same model was applied to the Army - Wessely writes he contacted them, they rejected his approach in the UK at first, he then approached the Americans - with the same model, Gulf War Syndrome could cost a lot, we have a model to investigate and intervene (taken from CFS) -- the Americans gave him that in and then the UK Army quickly jumped on board and made Wessely their main Dr. for all of mental health. He has since got most of his awards of this work - but the CFS work is the basis of it.

 

[A.B.]

but the CFS work is the basis of it.

... and the CFS work shows the approach does not work at all.

@Keith Geraghty this seems like a plausible explanation for how all this got started.

Engel was a psychoanalyst, and as you said at the time psychoanalysis was being discredited. The biopsychosocial approach was the answer to psychiatry being accused of denying the role of biological factors. A split seems to have occurred here: a part of psychiatry went on to focus heavily on drugs, another part tried to continue with the biopsychosocial model.

Arguably the type of biopsychosocial approach that White and Wessely have promoted is mostly a continuation of psychanalysis. The core belief that some diseases originate from the mind, and not from biological factors, is still there, and is never proven or questioned. Ironically this is the type of dualistic thinking that they disapprove of. Secondary gain and somatisation are also Freudian ideas and are still routinely evoked by White and Wessely.

PS: and drug focused approaches received support from big pharma, while apparently the BPS approach received support from companies and agencies that can save money by declaring unexplained physical symptoms a disorder of thought and behaviour.

 

[worldbackwards]

The meeting of minds between the Gov authorities in the DSS (welfare benefits) and Wessely - light the match in Wessely's mind; "we can argue that we can reduce benefits" -- hence funding and so on that followed

The focus on benefits (and increasingly social care) is key. Wessely can only get a foothold in medicine via MUPS style illnesses, because there is nothing and nobody there to challenge his decidedly ineffective treatments (except patients and we all know how little they matter in all of this).

Medicine is generally interested in outcomes - BPS has failed to demonstrate much in this way for "real" illnesses (or indeed any illnesses), so the widespread adoption across the board pushed for at the One Health conference was a complete pipe dream.

But in benefits and social care, there is no follow up - once someone has been judged 'fit for work' or capable of looking after themselves, despite protestations, that's it. Thus, quasi-scientific reasoning for such decisions becomes enormously influential without having to demonstrate an iota of effectiveness. It is, to coin a phrase, simply a belief that someone is not sick - nothing else required.

Whether it is as lucrative as was intended is open to question - my supposition is that the endless retesting, harassment and damage to the sick will cost a good deal on its own and is yet to provoke a significant fall in benefit claimants, largely because they all remain sick.

 

[RogerBlack]

Sorry to bore on this subject, but I find it interesting to consider the point at which rationality lost out to the "endarkenment", as I read someone describe it.

A book on the topic would be interesting.
Though one purely attacking White et al would be bad.
A 'balanced' treatment of the subject might be interesting.

CBT for example could I imagine help to a limited degree some CFS sufferers who can manage the sessions with obsessional thoughts about their disease and its symptoms as well as some with sleep.

_NOT_ in directly reducing fatigue, but worrying about the disease and its prognosis, as well as how to deal with and plan for and cope with emotionally others reactions all of which (at least in me) have in the past sapped my energy, and sometimes directly caused crashes.

I don't unfortunately believe that White et al are deliberately lying.
That might be easier. They seem to actually believe this.

 

[Wildcat]

.
Some well established US advocates state that there was communication between Wessely and Stephen Strauss of the NIH from 1987/8 onwards.
.
Roy S on this thread - http://forums.phoenixrising.me/index.php?threads/nih-strauss-cdc-fukuda-iom-the-cfs-report.29470/
" If I recall correctly Hillary Johnson had a PDF of a letter from Simon Wessely to Stephen Straus from 1988 (?) That would also be useful. Unfortunately, she took her blog down."
.
At the beginning of that PR thread RoyS reproduces the (now notorious) 1994 letter from Stephen Strauss to Keiji Fukuda.



~~~~~~~~~~~~~~~~~~~~~~~~~~
.



Mary Schweitzer here: Mary M Schweitzer Testimony to the CFSCC/NIH (?) (Unfortunately this is not dated, but must be post 1998. There is a second part to Mary's statement, on the link) :


http://www.axfordsabode.org.uk/me/ms-testm.htm

Mary M Schweitzer Testimony

"I wish to enter the strongest protest to the choice of experts at the "Internal NIAID Consultation" (formerly the "State of the Science Meeting") with regard to Chronic Fatigue Syndrome (CFS) held yesterday by the National Institutes of Health.

The reasons for my protest are:

1. The four experts represent the same point of view. It would have seemed more reasonable for different approaches to research regarding CFS to have been presented to the outside experts at the meeting. Drs. Straus, Demitrack, Wessely, and Sharpe believe that CFS is a form of "functional somatization." I wish to know why there was no one there to represent the research that has been published in peer-reviewed journals such as the Journal of the American Medical Association in the areas of cardiology, endocrinology, immunology, and biochemistry.

2. None of the three medical representatives to the CFSCC were asked to contribute to the meeting in any way; indeed, when they were finally permitted to attend, it was as observers only. They were not allowed to speak. If the medical representatives to the CFSCC are not to be consulted when the NIH puts together an "internal" consultation to present to non-specialists, what purpose does the CFSCC serve?

3. None of the three research scientists who head federally-funded CFS research clinics were asked to contribute to the meeting in any way.

4. Dr. Morans stated that he explicitly excluded researchers who had received NIH grants because he believed they would be "prejudiced." The four researchers who were permitted to speak are hardly disinterested parties.

Let me continue with specific objections to the four who were chosen - in the context that they were the only researchers chosen.

Dr. Mark Demitrack is the research partner of Dr. Stephen Straus. Hence, his views would be expected to echo Dr. Straus's precisely. Both Dr. Demitrack and Dr. Straus have received grants from the NIH, and although Dr. Straus is on the NIH staff, Dr. Demitrack is an executive with the pharmaceutical company Eli Lilly, the makers of Prozac, which Dr. Demitrack and the NIH have frequently recommended for patients with CFS (including pediatric patients), to the exclusion of other valid treatments.

Dr. Simon Wessely and Dr. Michael Sharpe are heavily involved in political debates currently going on in the United Kingdom over the use of the term Myalgic Encephalitis (M.E.) rather than the use of "CFS." M.E. has been in contiguous use in the UK since the mid-1950s to describe the illness that is best defined in the U.S. as CFS (although there are notable differences in the definitions: CFS-1994 emphasizes "fatigue," whereas Dr. Ramsay's M.E. definition emphasizes neurological difficulties). Dr. Straus flew to the UK to assist Drs. Wessely and Sharpe in their endeavours, implicitly placing the imprint of the U.S. NIH upon their use of the term "CFS" as globally correct.

However, Drs. Wessely and Sharpe do not use the same research definition for CFS as is used by the U.S. Centers for Disease Control. I testified directly to the Surgeon-General on this issue last April. The research definition that Drs. Wessely and Sharpe use corresponds more closely to the CDC's definition of "chronic fatigue" - not "chronic fatigue syndrome" - an important distinction, because the bulk of patients with "chronic fatigue" actually have mood disorders.

Dr. Wessely informed me personally that I could not have CFS because I also have Neurally Mediated Hypotension (NMH). He said that any patient with a physical impairment would never reach his doors at the CFS clinic he runs in the UK. I will note that we have a tautology here: he sees patients who have no physical problems; and he insists that CFS patients therefore have no physical problems. If a diagnosis of NMH excludes one from a diagnosis of CFS, then the referees and editors of the Journal of the American Medical Association must have been mistaken when they accepted the article written by Dr. Peter Rowe of Johns Hopkins specifically noting that NMH is a characteristic of CFS.

In a public exchange at the AACFS Research Conference in Boston, October 1998, Dr. Michael Sharpe stated that 5 percent of the population could be expected to have CFS. The U.S. CDC, however, estimates that only 0.2 percent of the population has CFS. Hence, when Dr. Sharpe puts together a sample of 100 "CFS" patients according to his definition, only 4 of them would actually meet the CDC's definition of CFS! I strongly urge this body to initiate the use of the terms CFS-CDC and CFS-UK to distinguish between these very different definitions, as the resulting research only clouds (rather than edifies) our knowledge of the disease.

I would finally like to point out that when I testified last November to the CFSCC about the infestation of HHV-6a found in my leukocytes last year, and that after six months of treatment with the experimental drug Ampligen all traces of HHV-6a DNA were gone, Dr. Straus immediately spoke up to state that "only three researchers in the United States are competent to do PKR analysis and therefore it is doubtful that I had HHV-6a to begin with, let alone that Ampligen eradicated it." As it turns out, the researcher in whose study I am a participant is Dr.Dhavram Ablashi, who was the co-discoverer of HHV-6 while working with Dr. Gallo at the NIH. I would like Dr. Straus to state for the record whether he retracts his denigrating comments about my experiences with HHV-6a and Ampligen, or whether he does not believe Dr. Ablashi is capable of this type of research.

Finally, Dr. Straus is an expert in virology. By his own statements, he believes that this disease is not caused by a virus. I would like to know why Dr. Straus did not turn over research in this disease to the National Institutes for Mental Health when he drew this conclusion, but has instead continued to receive funding to study a disease which he himself admits is beyond his area of professional expertise."

Copyright Mary M. Schweitzer, Ph.D. ©

.
.

 

[Sidereal]

Dr. Wessely informed me personally that I could not have CFS because I also have Neurally Mediated Hypotension (NMH). He said that any patient with a physical impairment would never reach his doors at the CFS clinic he runs in the UK. I will note that we have a tautology here: he sees patients who have no physical problems; and he insists that CFS patients therefore have no physical problems.

Holy shit. Problems with blood pressure and heart rate regulation are practically diagnostic of ME/CFS.

 

[A.B.]

Dr. Wessely informed me personally that I could not have CFS because I also have Neurally Mediated Hypotension (NMH). He said that any patient with a physical impairment would never reach his doors at the CFS clinic he runs in the UK. I will note that we have a tautology here: he sees patients who have no physical problems; and he insists that CFS patients therefore have no physical problems.

I note a self fulfilling prophecy here: he also instructs doctors to do only minimal testing. Supposedly that is to protect the highly suggestionable patient from being made to believe that they are sick, but it is highly advantageous to anyone who wishes to categorise the patient as somatiser because minimal testing typically shows no abnormalities in ME/CFS.

 

[Sidereal]

And just to add, these are the fatigue clinics they are going to be recruiting from for MEGA. Does Wessely really exclude dysautonomia patients from CFS diagnosis in his clinic or was this just something he said in the 1990s when he didn't know anything?

 

[charles shepherd]

A book on the topic would be interesting.
Though one purely attacking White et al would be bad.
A 'balanced' treatment of the subject might be interesting.

CBT for example could I imagine help to a limited degree some CFS sufferers who can manage the sessions with obsessional thoughts about their disease and its symptoms as well as some with sleep.

_NOT_ in directly reducing fatigue, but worrying about the disease and its prognosis, as well as how to deal with and plan for and cope with emotionally others reactions all of which (at least in me) have in the past sapped my energy, and sometimes directly caused crashes.

I don't unfortunately believe that White et al are deliberately lying.
That might be easier. They seem to actually believe this.

If you want to follow the history of the early outbreaks of ME, the outbreak at the Royal Free Hospital in 1955, the introduction of the term ME in the Lancet editorial that followed, and the demolition of the medical model and re-categorisation as mass hysteria by McEvedy and Beard, then you ought to get a copy of Dr Melvin Ramsay's excellent book on the history of ME:

This book was re-published by the MEA (with permission and co-operation of the Ramsay family) and is available from the MEA

MEA literature list:

http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-July-2016.pdf

 

[Valentijn]

And just to add, these are the fatigue clinics they are going to be recruiting from for MEGA. Does Wessely really exclude dysautonomia patients from CFS diagnosis in his clinic or was this just something he said in the 1990s when he didn't know anything?

Mostly he seems to acknowledge it exists in ME patients, but that it's solely the result of deconditioning. But I don't see anything about it after 2003 - maybe he found it more convenient to pretend it didn't exist, since he pretty blatantly didn't know WTF he was talking about

. . . lack of physical activity has profound effects on muscle function and chemistry as well as on cardiac function, but it may also affect both immune and psychological status. Particularly relevant is the fact that lack of activity is itself a risk factor for fatigue, which may set up a vicious circle of inactivity and impairment. Studies of CFS have reported abnormalities in many aspects of neuromuscular, cardiac, immunologic, and psychological functioning, yet the possible confounding role of inactivity is not always addressed.
Wessely S. The epidemiology of chronic fatigue syndrome. Epidemiologic Reviews 1995; 17:139-151.

Certain physical abnormalities may be found that reflect the consequence of chronic ill health and inactivity, Muscle wasting might he the result of prolonged bedrest, and suggests that active rehabilitation is an urgent priority, but will be prolonged. Another possible consequence of chronic inactivity is postural hypotension. We routinely test for this, since, if present, it can explain, and hence help the patient to understand, symptoms such as dizziness. In our experience it usually resolves with increased activity.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Rest reduces activity tolerance, and has profound effects on cardiovascular and neuromuscular function. With time, more symptoms and greater fatigue will occur at progressively lower levels of exertion. Inactivity therefore sustains symptoms, and increases sensitivity to them.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

 

[RogerBlack]

Mostly he seems to acknowledge it exists in ME patients, but that it's solely the result of deconditioning.

I haven't dug into the literature much.
Does 'deconditioning' have any physical basis?
Is the claim that this is purely due to physical inactivity as in someone who's been doing bed rest, and normal responses to exercise - delayed onset muscle soreness et al?