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

Discussion in 'PsychoSocial ME/CFS Research' started by Trish, Jul 4, 2020.

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  1. Trish

    Trish Moderator Staff Member

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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.
     
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  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The full report
     

    Attached Files:

  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  6. Daisymay

    Daisymay Senior Member (Voting Rights)

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    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
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    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.
     
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  8. chrisb

    chrisb Senior Member (Voting Rights)

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    Just realised. It was Ellen DeFreitas' retrovirus.
     
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  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    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.
     
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    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.
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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)
     
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  12. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    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.
     
    Last edited: Jul 10, 2020
  13. Forbin

    Forbin Senior Member (Voting Rights)

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

    Mithriel Senior Member (Voting Rights)

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    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.
     
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  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     

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