Chronic Fatigue Syndrome - Summary of a Report of a Joint Committee of the Royal Colleges of Physicians, Psychiatrists and GP's, 1996, Simon Wessely

Trish

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Found by @DigitalDrifter who asked me to post it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5401495/?page=1

Journal of the Royal College of Physicians, London, Nov-Dec 1996

Chronic Fatigue Syndrome
Summary of a Report of a Joint Committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners
by Simon Wessely

A 7 page scanned document, so I can't copy and paste the abstract which is very vague.

It concludes with 'Essential skills/tasks for a Multidisciplinary CFS unit'
The content is very much what I would expect - advice to doctors to do as little testing as possible, investigate psychological perpetuating factors, reassure patients there's nothing physical wrong, and advise on a program of increasing activity.
 
Royal Colleges 1996 report said:
The authors have extensive clinical experience in CFS and associated syndromes. However, they have not based the report solely on that experience but have also
drawn from the available methodologically sound research literature.

Royal Colleges 1996 report said:
A number of definitions have been proposed for CFS. We support the use of defined criteria whose reliability can be tested using tried and proven methodologies.
The most promising are those recently introduced by the Center for Diseases Control
in Atlanta, the so-called 1994 CDC criteria,19 and those produced as a result of a
consensus conference held in 1991 in this country, the so-called Oxford criteria20

Royal Colleges 1996 report said:
Since then the case definition has been
revised, and it is no longer necessary to exclude those with common psychiatric
conditions such as depression or anxiety.
 
It's really hard to put in perspective just how incompetent this process was. The Royal Colleges of Pseudomedicine, I guess. The gullibility score is off the charts.

With experts like this... well... best to find entirely new experts. The merger of politics and medicine, featuring only the worst of each, is about as effective as people should have expected it to be.
 
In case of interest, these articles from the time:


http://margaretwilliams.me/1996/observations-on-joint-royal-colleges-report-cr54.pdf

OBSERVATIONS ON THE JOINT REPORT OF THE UK ROYAL COLLEGES OF PHYSICIANS, PSYCHIATRISTS AND GENERAL PRACTITIONERS ON CHRONIC FATIGUE SYNDROME, OCTOBER 1996


http://margaretwilliams.me/1997/comparison-of-us-report-with-uk-royal-colleges-report-on-cfs.pdf

Comparison of the American Report for Physicians on CFS with the UK Joint Royal Colleges’ Report on CFS


http://margaretwilliams.me/1995/uk-task-force-report-cfids-chronicle_spring-1995.pdf

International News From the CFIDS Community: UK Task Force Report: CFS/M.E. is Real
 
I just thought I would highlight this part of the Margaret Williams paper as the question of ten seems to come up about blood transfusions, some thinking it related to XMRV but most thinking it is lost in the mist of time. This appears to be the evidence but the question of what might have prompted this in 1989, just as the psychos started to get a grip, is an interesting one, which should probably be investigated elsewhere.

3. The American report states on page 2: “No published data indicate that CFS…can be transmitted…by blood transfusion”. If such is the case, would Professor Turnberg be kind enough to explain why patients with CFS/ME are permanently excluded from donating blood, as per the “Guidelines for the Blood Transfusion Service in the United Kingdom” 1989: chapter 5: paragraphs 5.313; 5.42 and 5.410.
 
Just realised. It was Ellen DeFreitas' retrovirus.

Excuse my ignorance @chrisb, who is Ellen DeFreitas?

As a relative newbie I only know some of the history pre- 1990s, probably the more outrageous stuff. The name rings a quiet, distant bell, I think, but that could be my imagination.
 
Excuse my ignorance @chrisb, who is Ellen DeFreitas?

This is off the top of my head and so needs checking before quoting. She was a leading researcher at the Wistar Institute. Paul Cheney had Bell from Lyndonville send her some samples. She found what she thought was a new retrovirus and that she was eventually able to distinguish cases from controls. I think it was the NIH who said that they were unable to reproduce the results but DeFreitas claimed that they were not using her techniques, and refused to do so. She ended up being involved in a traffic accident and unable to continue.

There was a feeling that loose ends were left unattended to.
 
just found this rapid response to
Chronic fatigue syndrome or myalgic encephalomyelitis
Peter White, Maurice Murphy, Jill Moss, George Armstrong, Sir Peter Spencer

13 September 2007
by Douglas T Fraser

In their editorial of 1st September BMJ 2007; 335:411-412 ”Chronic
fatigue syndrome or myalgic encephalomyelitis NICE guidelines pave the way
forward for patients and doctors", Peter White, Maurice Murphy, Jill Moss,
George Armstrong, and Sir Peter Spencer state that:

"The uncertainty inherent in making a diagnosis of chronic fatigue
syndrome (CFS) is reflected by the variety of names (such as myalgic
encephalomyelitis; ME) it has been given."

A particularly protracted period before reaching a conclusion may be
indicative of uncertainty, the repetition of laboratory work may reflect
uncertainty, the variety of tests employed might also signal doubt, and
referrals to other specialists could be a sign of uncertainty.

It is inconceivable that a “variety of names” signals diagnostic
uncertainty.

This troubling claim appears in an editorial about a subject
affecting millions of lives, and perhaps the authors would welcome this
opportunity to clarify precisely what it is that they wish BMJ readers to
understand by this claim ?

The authors continue that: "The names reflect the hope that such
labels can impose some certainty where little exists"

Names and labels identify things, it's quite a practical arrangement,
and it usually "reflects" some kind of intelligent process.

The furry little four legged purring animal that meows in the kitchen
has been quite thoughtfully labeled as a CAT, and this is very useful
because it helps me not to buy DOG food in Sainsbury's.

The names "Iceland disease", "Akureyri disease", “Tapanui flu”,
“Royal Free Disease”, "benign myalgic encephalomyelitis", "epidemic
neuromyrasthenia", "atypical poliomyelitis" and "epidemic vasculitis",
amongst others, "reflect" the intelligence and rationality of many
individuals living in an era when great care was taken over detail and
documentation in the identification of a disease entity, and it is worth
reading about and learning from this pre-internet past, not only to
understand the present, but to navigate the future, and avoid mistaking
‘cats’ for ‘dogs’.

Interestingly, amongst discerning scientists in the field today, the
name "myalgic encephalomyelitis" is undergoing a significant renaissance.

However, in referring to this rich lode of instructive material, with
a dismissive lash of the pen, the authors write: "The names reflect the
hope that such labels can impose some certainty where little exists."

Perhaps that was not their intention, and so maybe they would like to
take this opportunity via the eBMJ “interactive rapid responses” to
clarify this important pronouncement?
In view of the authors’ uncertainty over diagnosis, surely the first
port of call to facilitate a reliable diagnosis would be to the obvious:
reliable diagnostic criteria.
Unquestionably, the best available clinical diagnostic criteria were
published in 2003 by Carruthers et al. (http://www.cfids-
cab.org/MESA/ccpccd.pdf).

Referring to a comparison study executed using these criteria, one
expert in the field observed that:

"The selection of diagnostic signs and symptoms has major
implications for which individuals are diagnosed with ME/CFS and how
seriously the illness is viewed by health care providers, disability
insurers, rehabilitation planners, and patients and their families and
friends.

I hope the results of this comparison study will encourage more
physicians to USE THE CANADIAN CLINICAL CRITERIA".

(Leonard A. Jason, Ph D Director: Center for Community Research,
DePaul University, Chicago IL Board of Directors: American Association for
Chronic Fatigue Syndrome - An Overview of the Canadian Consensus Document
http://www.mefmaction.net/documents/me_overview.pdf).

Giving fair consideration to the beliefs Wessely S, Chalder T, White
PD, Sharpe MC, Prins J, Bleijenberg G and their colleagues hold about
myalgic encephalomyelitis, the authors of the Canadian Guidelines have
remarked that:

"There is much that is objectionable in (their) very value-laden
(second) hypothesis, with its implied primary causal role of cognitive,
behavioral and emotional processes in the genesis of ME/CFS.

This hypothesis is far from being confirmed, either on the basis of
research findings or from its empirical results.
Nevertheless, 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.

It is unlikely that the CBT and GET studies that were included in the
recent review (Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD,
Pamirez G. JAMA 2001) of treatments dealt with comparable homogeneous
groups since different inclusion and exclusion criteria were used in
selecting the test patients and control groups".

Given that medical science is mostly an international collaborative
enterprise, with repercussions on public health everywhere, perhaps the
authors could clarify why it is that they believe:

“It is (therefore) a welcome relief that the National Institute for
Health and Clinical Excellence (NICE) has just published clinical
guidelines on the diagnosis and management of this disease”, when these
Guidelines allow fatigue and a headache to be diagnosed as myalgic
encephalomyelitis?

Individuals suffer because of misdiagnosis, and medical science
involving the ‘misdiagnosed’ throws up yet more misleading data,
ultimately ruinous to individuals, medical research, and economies.

There can be no excuse; the ground work has been laid by Carruthers
et al., and yet four years later it is being destroyed in the UK and the
US.

Logic would dictate that individuals are trying to prevent discovery.

The authors of this BMJ editorial go on to imply that "chronic
fatigue syndrome" was the name "given" to name myalgic encephalomyelitis.

Quote: "The uncertainty inherent in making a diagnosis of chronic
fatigue syndrome (CFS) is reflected by the variety of names (such as
myalgic encephalomyelitis; ME) it has been given."

The authors may or may not be aware of the fact that it was the other
way around.

Myalgic encephalomyelitis was 'given' the name 'CFS'.

full article
https://www.bmj.com/content/335/761...onses&panels_ajax_tab_trigger=rapid-responses

(worth a read)
 
Royal Colleges 1996 report said:
Somatisation:
a condition where the patient presents with a physical symptom which is attributed to
a physical disease, but is more likely to be associated with depression or anxiety.
I've heard different definitions of somatisation, it seems to be used as code for either hysteria or hypochondria, or at least inconsequential symptoms.

Royal Colleges 1996 report said:
...while the commonly recommended
bed rest is more likely to exacerbate the patients problems. The most hopeful
approaches are thought to be controlled increases in activity, such as graded
exercise programmes (see Glossary), or cognitive behaviour therapy (see Glossary).
Based on what evidence?

Royal Colleges 1996 report said:
9. Mayou R, Bass C, Sharpe M (eds). The treatment of functional somatic symptoms. Oxford: Oxford University Press, 1995.
I wonder what the "eds" after Sharpe's name means.
 
Last edited:
This is off the top of my head and so needs checking before quoting. She was a leading researcher at the Wistar Institute. Paul Cheney had Bell from Lyndonville send her some samples. She found what she thought was a new retrovirus and that she was eventually able to distinguish cases from controls. I think it was the NIH who said that they were unable to reproduce the results but DeFreitas claimed that they were not using her techniques, and refused to do so. She ended up being involved in a traffic accident and unable to continue.

There was a feeling that loose ends were left unattended to.

From memory, she found a small round retrovirus. I think it was her samples that were sent to Gow in Glasgow where he found that the controls had the virus while none of her samples did and it was suggested at the time that the samples had been wrongly labelled.

She said that the NIH were doing her test wrong and invited them to her lab which I think was in Florida. They replied that they could not afford plane tickets! It was while she was trying to sort this out that her lab was destroyed by a hurricane.

As Chrisb said she was then in a car crash and was left very disabled. it was another promising avenue of research that just faded away with no serious attempt made to replicate the findings.
 
How was ME diagnosed (in the UK) before Fukuda 1994 was adopted as part of the change to CFS in 1996? (ie what was the criteria used)

Diseases used to be described the same as biological specimens like dinosaurs so a description was made after each epidemic which is one reason why there are so many names.

I can't remember the dates, but there was a scientific meeting where they agreed on the name Myalgic Encephalomyelitis. Donald Acheson, who was chief medical officer I think published the findings.

About 1982 Eleanor Bell, a GP from Scotland, published a paper where she said there were cases of sporadic ME in the community. It is very compassionate and she talks about patients who trudge round hospital departments with no answers and no help. This was the paper my husband brought home and we checked the symptoms off and finally had an answer to what I had after 16 years.

There were a few specialists who diagnosed ME from their personal experience but it was a forgotten disease. It was believed to be caused by enteroviruses and the prevalent view was that the polio vaccine had made them a thing of the past with the ones still around being trivial.
 
This paper probably fits that but on the pushing for the erasure of CFS, not explaining how it happened. Anyone else has suggestions?



David Tuller's article explains the US side of things at the CDC and NIH, is there one for the UK side of things? How the ME-BPS model was bullied through as tired-all-the-time?
 
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