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The UK Medical Research Council has a secret file on Myalgic Encephalomyelitis (ME)

Discussion in 'Action Alerts and Advocacy' started by keenly, Mar 17, 2017.

  1. keenly

    keenly Senior Member

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    The UK Medical Research Council has a secret file on Myalgic Encephalomyelitis (ME) that contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023. This present document is an overview of the misinformation and contradictions about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) that have pervaded some UK Departments of State and other agencies since 1988. It also considers the involvement of certain UK psychiatrists who have proven vested interests in the propagation of this misinformation that is contrary to world-wide scientific evidence and that for two decades has resulted in the medical abuse of UK patients with ME/CFS.


    This is from 2007 BTW.
    This really only touches the surface
    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
     
    Cornishbird likes this.
  2. Countrygirl

    Countrygirl ME is not MUS

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    @keenly The information contained in those files is available on the internet as Valerie Elliot Smith obtained their release.

    I was particularly interested to read them as I am one of the people who, I found to my surprise, is a subject of their contents although names are redacted.

    You can find a version of them in the document's section of the Grace Charity's site: https://www.thegracecharityforme.org/documents/
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Anyone who thinks there aren't dark and often, stupid, pointless, childish, cowardly or even murderous "conspiracies" are the ones who are naïve.

    as I've said before what I think started this way back was workers in UK's Weapons of mass Destruction factories getting poisoned by manufacturing V and VX nerve gas coming down with illnesses exactly like M.E. and Gulf War Syndrome.
    add in general and similar crap even in other areas such as asbestos, never mind the unbelievable lies and cover ups regarding the civilian nuclear industry

    read up on Sellafield if anyone ever wants to understand how FOUL and stupid the British Establishment really is, sigh.
    Big chunk of the North of England would be a dead zone to this day if one engineer hadn't fought his ass off to get filters placed on the reactor chimneys there, and the bureaucratic "bean counters" and numbnut politicians fought him tooth and nail to try and stop it, saying the cost was "pointless and prohibitive"...jebuz!
     
  4. Cheesus

    Cheesus Senior Member

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    Ah, you have reached the ultimate pinnacle of life: you're a redacted name in a medical conspiracy. You are so lucky :rolleyes:
     
  5. Countrygirl

    Countrygirl ME is not MUS

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    Ha!!!!! So my life has been worth it after all! ?

    44 years sick, loss of all life's dreams, family, career, financial security in exchange for often gruelling suffering, social isolation, and disbelief and poverty........but one or two of my ' ME underground' activities have been recorded in the 'Secret Files'. What more could a girl ask for in life???:p:cool::ill::aghhh:
     
  6. alex3619

    alex3619 Senior Member

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    This is at least the third thread on such topics. I had at one point some of these redacted files. There are at least two. They were, and probably still are, downloadable from the archive directly.

    However, aside from individual papers that have pieces redacted, it is unclear that every document that should be there actually is, or that there are not more files. Of those files we know about the first release is the one I want to reread, as it mentioned ME from vaccinations. It was about a comment from Prof Behan at a meeting in about 1992. The last time I looked I did not find it again. Maybe I missed it. Or maybe it isn't there any more. Does anyone reading the current files see such a comment?

    At least one of these files will be held until late this century. The full file will be released at that time.
     
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  7. Countrygirl

    Countrygirl ME is not MUS

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    Isn't that about about the year 2072? I think the usual time was extended by a few decades to ensure we were all safely dead and buried. Now they would be interesting.....................
     
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  8. Chrisb

    Chrisb Senior Member

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    I have just looked again at the file of papers. One fascinating aspect is the way in which the file is virtually "book-ended" by contributions from SW. Admittedly there is one later substantive letter. From a certain PDW.

    I do not find the initial letter dated 10 Jan 1992, at page 231, unduly problematic. The views do not seem dogmatic. They are expressed in the terms which might reasonably be expected. The same can be said of much of the rest of the file.

    My impression is that the tone changes with the summary of the talk given by Thomas and Wessely on 2 Nov 1993, at pages 6 and 7. The contribution of Thomas appears to be bizarre. There is then the apparently unsolicited intervention of White and, just as the correspondence appears to be heading in new interesting directions, the file closes. Very strange.

    "Their intention is to write to you shortly in far more detail ." What a cliffhanger of a way to close a file.
     
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  9. Chrisb

    Chrisb Senior Member

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    On reflection there is nothing particularly sinister about the closure of the file at that particular point. The final letter from PDW contains the handwritten note "I have overlooked responding to this note with all the other activities going on...." signed Mansel 13/1/94.

    Presumably that response is in the 1994/1996 papers. There might perhaps be legitimate surprise that "all the other activities" did not merit a mention in the papers.

    It always seemed unlikely to me that two relatively junior, at the time, consultants could have had a major impact on government policy and these papers clearly show that they did not. Sometimes apparent leaders are merely those pushed to the front by others who avoid the limelight.

    The date of SW's letter to MA at pp 17, 18 is assumed to be 1st October 1993.One of the papers is out of order. It may be that MA's response is at p9 and p11 and dated 13 October 1993. SW is invited to attend a meeting on 2nd November which has already been arranged and at which Prof Thomas is to speak on ME. The document at p10 is the conclusion of the summary of that meeting appearing at pp 6, 7 and 8.

    PDW then wrote to MA on 10 November 1993. This seems to be a "me too" letter.

    It is clear from MA's letter to SW that the department was already looking for other views to refute the model which was in danger of becoming accepted. One is reminded forcefully of the hapless MP at PMQs who has just had the whips hand him a piece of paper containing the question he is to ask.

    The question that needs answering is on what date did Peter Lilley employ John Le Cascio. I think it was some time in 1993 but cannot find a date. He was brought in to do a particular job so the idea must have been circulating in the higher realms for some months before. It does seem likely that Le Cascio's appointment preceded the interventions of SW and PDW.

    But it is also clear from SW 's letter that he had what might be considered to be an unusual interest in the cost of the illness:

    "I cannot believe that is the intention of the department if only on grounds of cost!"

    "........It seems likely that the result will be an ever increasing number of claims for permanent benefits in people who might otherwise have had a chance of recovery."

    So much is still unclear.
     
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  10. charles shepherd

    charles shepherd Senior Member

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  11. RogerBlack

    RogerBlack Senior Member

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    Comparing currently funded with recently funded, the difference is stark:
    Current: Determination of mitochondrial function and cytokine production in skeletal muscle of patients with CFS
    Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment
    Identifying the biological fingerprints of fatigue
    Can enhancing SWS improve daytime function in patients with CFS?
    Persistent Fatigue Induced by Interferon-alpha: A New Immunological Model for Chronic Fatigue Syndrome

    Recent:
    The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome (ended May 2011)
    Chronic Fatigue & Ethnicity (ended November 2008)
    General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes (ended May 2010)
    The feasibility of a population based study of CFS, IBS and CWP (ended June 2007)
    Exploratory RCT of training General Practitioners to mange patients with persistent Medically Unexplained Symptoms (MUS) (ended December 2005)
    Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (ended October 2008)
     
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  12. Chrisb

    Chrisb Senior Member

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    It may be that this thread has not yet strayed on topic.

    The documents I was discussing are clearly not MRC files (although probably the ones intended). The files subsequently referred to are clearly not secret.
     
  13. RogerBlack

    RogerBlack Senior Member

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    Secret documents do not always remain so.

    Are these not the documents referred to in the second post of the thread as released - and if you think not - why not.
     
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