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

The full report

 

this was the report that lead to the 'renaming' of ME as CFS.
(rationale on page 2)

see
https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-87#post-84448

there is also a link to rebuttal published in Lancet.

 

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.

 

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

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

(worth a read)

 

I've heard different definitions of somatisation, it seems to be used as code for either hysteria or hypochondria, or at least inconsequential symptoms.

Based on what evidence?

I wonder what the "eds" after Sharpe's name means.

 

I'm pretty sure it means "editors" and applies to Mayou, Bass and Sharpe collectively.

 

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.

 

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?

https://twitter.com/user/status/1298375506707001346


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?