Royal College's Report on CFS (1996)

[Tom Kindlon]

20 years ago this year, the following very influential report was published:

"Chronic Fatigue Syndrome
Report of a joint working group of the Royal Colleges of Physicians,
Psychiatrists, and General Practitioners.

I've uploaded it: https://www.mediafire.com/?jjlowqc79sx1an5 or it can also be downloaded from:
www.ibrarian.net/navon/paper/Chronic_Fatigue_Syndrome.pdf?paperid=3116310

It was arguably the first and/or the most important concerted attempt by the CBT/GET school of thought to try to take dominance of the field.

One can see in the image how little research Peter White, Simon Wessely & co thought should be done into the illness. Thank goodness we have other researchers now.

 

[Tom Kindlon]

ITN coverage: (129 seconds)

 

[Sidereal]

This is one of the most damaging documents ever written on the subject of CFS.

 

[charles shepherd]

Thanks for the reminder Tom!

I can still remember spending the day in London trying to persuade various people from the media that this was a very unbalanced and unhelpful document

And this is part of what The Lancet had to say in their editorial that accompanied the report:

"The report points out that in studies of psychiatric
disorder in CFS, about half the patients fulfilled
criteria for affective disorder and a further quarter
had other psychiatric illness, mainly anxiety and
somatisation disorders.

This is where the charities
cry “foul”.

The sixteen-strong committee was topheavy
with psychiatric experts, so the emphasis on
psychological causes and management (introduction
of graded exercise and cognitive behaviour therapy)
is no surprise.

Charles Shepherd, medical director
for the ME Association, told us that “the committee
was rigged, with dissenting voices excluded”. He
feels that a 1984 report published by the charity
Westcare, which prompted the latest report, was
“too physically oriented” for some people and it
called for the government to fund research.

Certainly, the expert committee describes no
attempt to collect external opinions, and the report
is little more than a literature survey.

The latest report has few implications for funding,
even though it takes a broad sweep at the burden of
the condition for patients, their families, and society,
without any quantification.

The committee’s terms
of reference included a brief to look at service
provision; indeed, one member was a commissioner
who buys health-care services, and a whole appendix
is a special summary for commissioners.

After emphasising management within primary care, the
report then says that the secondary sector is “often
inadequate”, suggesting the low-cost option of
setting up multidisciplinary teams.

Psychiatry has won the day for now.

A decade hence, when an organic cause for at least some cases
of CFS may have emerged, it would be tempting to
ask the committee to reconvene.

We believe that the
report was haphazardly set-up, biased, and
inconclusive, and is of little help to patients or their
physicians.

Or as the Department of Health weakly
put it, the report will “provide a further contribution
to the ongoing debate”.

Incidentally, the
Department still talks about CFS/ME.

Complete editorial:
http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(05)64917-3.pdf

For once, the Lancet had listened to what we had to say and come down on our side!

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[daisybell]

It's so awful I had to stop reading.

 

[GreyOwl]

Wessely was less confident of his schtick back in 1996, judging from that clip.

 

[Comet]

It's so awful I had to stop reading.

Me too. I have no words...

 

[Chrisb]

Thanks for reminding us of this Tom. I must sat that it largely passed me by at the time, as did most things. And thanks to Charles for his efforts.

For the benefit of our younger members, it is interesting to speculate as to whether such a report would have been contemplated by Kenneth Calman's predecessor, Donald Acheson - credited with originating the term benign myalgic encephalomyelitis. It would be interesting to understand more of the politics. Calman replaced Acheson as Chief Medical Officer in 1991 in the early days of the Major government. One does not know why.

We are not the only group let down by the medical/political establishment of the time. The comments attributed to Professor Collinge in this article may seem familiar.

http://justice4andy.com/whos-to-blame-2/kenneth-calman

Did I see somewhere that Ian Gibson is writing a book on the politics of ME? I look forward to reading it.

 

[worldbackwards]

This thread feels slightly unnerving. Like celebrating your own funeral.

 

[Yogi]

Who writes editorials?

Is it the editor?

Richard Horton was the editor from 1995?

https://en.wikipedia.org/wiki/The_Lancet

What happened to him for a 180 degrees turn a decade later?

Was he leant on ?

A decade hence, when an organic cause for at least some cases
of CFS may have emerged, it would be tempting to
ask the committee to reconvene.

 

[Dolphin]

Who writes editorials?

Is it the editor?

Richard Horton was the editor from 1995?

https://en.wikipedia.org/wiki/The_Lancet

What happened to him for a 180 degrees turn a decade later?

Was he leant on ?

A decade hence, when an organic cause for at least some cases
of CFS may have emerged, it would be tempting to
ask the committee to reconvene.

I have seen various people say Richard Horton wrote this over the last 20 years with nobody saying this was incorrect. Ellen Goudsmit in particular seemed to be sure he wrote it.

 

[Yogi]

Thanks @Dolphin.

It really begs the question what happened to him?

 

[Snowdrop]

Drinking the Kool-Aid generally isn't seen as the good choice but when one's esteemed collegues are offering it in chaliced goblets and they've all partaken. . . .

 

[Yogi]

"It will be recalled by the ME community that after publication of the Joint Royal Colleges’ Report on CFS in 1996 of which Professor Simon Wessely was the prime mover (CR54, published by the RCP) -- a report that was internationally condemned for its extreme psychiatric bias -- the Editor of the Lancet, Richard Horton, courageously spoke out against it, saying on the record: “The college representatives interpreted every piece of evidence pointing to a biological cause in a negative light. Medical paternalism seems alive and well in Britain today” (Why doctors are failing ME sufferers. Dr Richard Horton. Observer Life, 23 March 1997)."

http://www.meactionuk.org.uk/Politically-modified_Research.htm

Anyone got a copy of 97 Observor Life?

Margaret Williams is a one woman ME Library. Someone who knows her needs to ask her if all the resources she has can be put on MEPEdia for wider dissemination?

 

[worldbackwards]

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

 

[sarah darwins]

Anyone got a copy of 97 Observor Life?

If anyone happens to have a Guardian archive subscription (The Observer is a sister paper to the Guardian) or if they have more money than I do and can afford a one-day pass, the full article by Horton can be accessed through this page:

http://pqasb.pqarchiver.com/guardian/offers.html?url=/guardian/doc/477879799.html?FMT=AI&FMTS=AI:CITE&type=historic&date=Mar+23%2C+1997&author=Horton%2C+Richard&pub=The+Observer+%281901-+2003%29&desc=Health

 

[Daisymay]

I have seen various people say Richard Horton wrote this over the last 20 years with nobody saying this was incorrect. Ellen Goudsmit in particular seemed to be sure he wrote it.

The following two paragraphs are taken from a 1996 article on the RC Report by Margaret Williams and Eileen Marshall:

"The British Medical Journal offered a Leader to Dr Stephen Straus, Chief of the Laboratory of Investigation, National institute of Allergy and Infectious Diseases, Bethesda, USA, published for maximum effect just threedays after the launch of the report, in which Straus describes this report as "arguably, the finest contemporaryposition statement in the field".

Interpreting this as yet more evidence of the current trans-Atlantic mutual support between Drs Straus and Wessely, the more perspicacious readers turned to The Lancet, whose commonsense Editorial saw straight through the fabric of this Report:"The sixteen-strong committee was top-heavy with psychiatric experts, so the emphasis on psychological causes and management ... is no surprise. Charles Shepherd, Medical Director for the ME Association, told us that 'the committee was rigged, with dissenting voices excluded'. Certainly, the expert committee describes no attempt to collect external opinions.....Psychiatry has won the day for now.... We believe that the report was haphazardly set up, biased, and inconclusive, and is of little help to patients or their physicians".


Here's the Strauss BMJ editorial, you need to sign up for a free trial for full access:

Chronic fatigue syndrome - “Biopsychosocial approach” may be difficult in practice
BMJ 1996; 313 doi: http://dx.doi.org/10.1136/bmj.313.7061.831 (Published 05 October 1996)

"This week a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in Britain issued a report on chronic fatigue syndrome.1 The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic.

The term chronic fatigue syndrome is relatively new. It first appeared in the 1988 proposal by the United States Centers for Disease Control to formalise a working case definition for symptoms that had been variously named and attributed to numerous causes for over two centuries. Through field testing, the case definition was revised and simplified in 1994. In essence, it classifies a constellation of prolonged and debilitating symptoms as worthy of medical attention and study (see box). Related case criteria were developed by consensus at Oxford in 1991. Neither the American nor the Oxford criteria assume the syndrome to be a …..."


And here's the Lancet Editorial, fully accessible:

Frustrating survey of chronic fatigue,
The Lancet, Volume 348, No. 9033, p971, 12 October 1996
DOI: http://dx.doi.org/10.1016/S0140-6736(05)64917-3

Last paragraph:

"Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS may have emerged, it would be tempting to ask the committee to reconvene. We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians. Or as the Department of Health weakly put it, the report will “provide a further contribution to the ongoing debate”. Incidentally, the Department still talks about CFS/ME."

 

[Daisymay]

I've attached a pdf file with Margaret Williams and Eileen Marshall's article, "Observations on Joint Royal Colleges' Report" from 1996.

 

[Deepwater]

Wessely was less confident of his schtick back in 1996, judging from that clip.

Oh, Wessely's always been careful to carry a get-out-of-jail-free card - there is at least one in each of his papers on ME. Is this consistent with his actually believing what he says or an indication of - hmm - medical politics?
As for Richard Horton, funny but I wondered right from the start whether he was being leant on. Publishing a bad report is one thing, but joining in the publicity machine for PACE in the way he did was off the wall. And as for now, wouldn't you think the only two logical options would be:
a) despite al the criticisms, he still believes in PACE and so responds to Tuller with a defence; or
b) he realises he's made a terrible mistake, expresses his horror at the paper's false claims and retracts it, or at least supports the calls for disclosure of data.
But he simply goes to ground - as if he can't do (a) and daren't do (b).
Was having to support PACE perhaps the price he paid for his 1996 article and publication of Andrew Wakefield's paper?
I realise this is entirely speculative but there's surely more behind UK medical politics than meets the eye. How does a man like Wessely - tragically wrong about the Camelford water poisoning victims, Gulf War Syndrome and (now very publicly) ME - get to be a knighted for it or come to be President of the Royal College of Psychiatrists?

 

[TiredSam]

How does a man like Wessely - tragically wrong about the Camelford water poisoning victims, Gulf War Syndrome and (now very publicly) ME - get to be a knighted for it or come to be President of the Royal College of Psychiatrists?

Because the UK medical establishment is completely corrupt?