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Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

Discussion in 'General ME/CFS News' started by Esther12, May 15, 2017.

  1. Esther12

    Esther12 Senior Member

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  2. Esther12

    Esther12 Senior Member

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    From discussion in another thread:

    They completey avoid addressing the concern raised by Tuller, and their defense of Crawley is entirely founded on processess rather than the deatils of her work or the claims she makes. It's exactly the sort of cowardly evasion of debate that has done so much to harm patients.

    I could not respect anyone who agreed for that letter to be released. It's a disgrace, and makes it difficult to see how anyone could defend the CMRC at this point.
     
    Esperanza, TiredSam, Mary and 21 others like this.
  3. dangermouse

    dangermouse Senior Member

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    I am so disappointed. The response is another non response. No acknowledgement of the bad behaviour, it is silence, again, in the hope that it'll all be forgotten soon.

    Even more disappointing is the silence from the charities, AfME isn't a surprise but I had higher hopes for the MEA.

    I can't trust or have any faith in the CMRC.
     
    Esperanza, Valentijn, JohnM and 15 others like this.
  4. user9876

    user9876 Senior Member

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    Bristol university put up a similar defense of one of the trials when people complained. What strikes me is that it is less than a glowing endorsement but rather suggests support for friends when they know that they don't deserve it.
     
    Valentijn, Solstice, MEMum and 11 others like this.
  5. Jo Best

    Jo Best Senior Member

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    The CMRC charities should be thoroughly ashamed of themselves because their members or supporters rely on their judgement as to what initiatives to trust and it was so obvious what the CMRC was intended for when it formed in 2013 that I cannot believe the CMRC charities were so naive and must conclude they were complicit.
     
  6. Sean

    Sean Senior Member

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    Well it's time that nonsense stopped.

    What on earth do they think they can gain from all this?
     
    MEMum, snowathlete, JaimeS and 2 others like this.
  7. Yogi

    Yogi Senior Member

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    David Tuller said "In other words, the CMRC has sent me its second “f**k off” message. Happy International ME Awareness Day!"

    ........DOES......



    .........IT (CMRC)..........



    ........NEED.......



    ........TO........



    ...........BE.........



    ........ANY......



    .........MORE........




    .......CLEARER........



    ..........TO.........




    ........PEOPLE.....



    ......??????...........





     
  8. Esther12

    Esther12 Senior Member

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    I'm not sure... I wonder if it partly reflects these peoples' genuine understanding of how 'science' should work: "If it got published in a peer-review journal, there's no reason to think critically about it".

    This mentality seems absurd to us, but I think we read a quite narrow range of views from researchers/academics/etc. I get the impression that a lot of people working in UK medical research really do think of peer-review as a vaguely magical process that absolves them of responsibility for looking at the evidence. It's like people who think that as 'science' is 'self-correcting' it is reasonable to have faith in it. That sort of mentality can make for an easy life, so that might encourage people to avoid thinking to seriously about the problems with it.
     
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  9. slysaint

    slysaint Senior Member

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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
    MAY 2013


    The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.

    Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.

    Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.

    It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.

    Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.

    The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.

    For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.

    The 25% ME Group
    www.25megroup.org
    enquiry@25megroup.org

    eta:
    CHARITY No. SC034265
    PATRON: Dr Byron Hyde MD
    MEDICAL ADVISOR: Dr Nigel Speight
    MA, MB,
    B Chir, FRCP, FRCPCH, DCH
    SCIENTIFIC ADVISORS: Dr Vance Spence PhD, Professor Malcolm Hooper PhD. B.Pharm. C.Chem. MRIC


    The writing was on the wall .....
     
    Last edited: May 15, 2017
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  10. Yogi

    Yogi Senior Member

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  11. Yogi

    Yogi Senior Member

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  12. Yogi

    Yogi Senior Member

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  13. slysaint

    slysaint Senior Member

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    Woolie, TrixieStix, MEMum and 7 others like this.
  14. Jo Best

    Jo Best Senior Member

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    rosa, Woolie, MEMum and 5 others like this.
  15. Sean

    Sean Senior Member

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    The psychs haven't had enough chances to botch it?
     
    Solstice, JaimeS, Jo Best and 2 others like this.
  16. Chrisb

    Chrisb Senior Member

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    The most unlikely sports, the ones which you never thought might possibly be held in repute, have concepts of "bringing the game into disrepute".

    Makes you think.
     
    MEMum, Jo Best and trishrhymes like this.
  17. Mohawk1995

    Mohawk1995 Senior Member

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    Just like the pain epidemic/opioid crisis in the US...If the people who treat these disorders were so successful, then why all of the continued and apparently worsening issues and results? If an effective and consistent treatment existed it would be obvious.

    For the issue of Pain, it would probably be better if medicine left it alone than to continue on "treating" it. Maybe for ME the same could be said not just the treatments that have been attempted and failed. At least until more effective treatments can be found. Not advocating stopping research and seeking treatment, but we really need to look at the problem globally and honestly ask the question are there things we are doing that are actually making it worse?
     
  18. BurnA

    BurnA Senior Member

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    This is exactly the party line isn't it, ....cross disciplinary science that people with CFS ME desperately need.

    No we dont desperately need any cross disciplinary science. We desperately need good quality biomedical science. End Of.
     
    lemonworld, Sea, Valentijn and 18 others like this.
  19. Jo Best

    Jo Best Senior Member

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    Penny's just dropped that 'cross-disciplinary' may be MEGA-speak for 'bio-psycho-social'.
     
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  20. NelliePledge

    NelliePledge plodder

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    lets hope its "full support" of the type that prime ministers give to cabinet ministers and football clubs give to managers they end up sacking in a weeks time
     
    Valentijn, Jo Best, Solstice and 9 others like this.

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