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ME Research UK: Fond farewell to CFS Research Foundation

Discussion in 'General ME/CFS News' started by Firestormm, May 21, 2014.

  1. Firestormm

    Firestormm

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    See also: AfME in talks to take-over assets of CFSRF: http://forums.phoenixrising.me/inde...scussions-with-cfs-research-foundation.30309/
     
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  2. Min

    Min Guest

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    This is the charity whose legacy to myalgic encephalomyelitis research is current pain research conducted, astoundingly enough, by Professor of Psychiatry Peter White of the PACE trial? Thanks, but we would have been better off if they'd shoved the research funding down a drain.
     
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  3. Bob

    Bob

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    I don't want Peter White funded either, but I don't think you can judge the CFS Research Foundation's legacy based on a single funding decision. (We all make bad decisions from time to time.)

    It seems that nearly all of their funding went towards biomedical investigations in relation to such things as enteroviruses, paroviruses, EBV, gene expression, Hep B vaccines, neuroendocrine function etc. They also funded Jonathan Kerr on a number of occasions. The Peter White study seems to be an anomaly.

    I don't know anything about the organisation, except for this list of grants that they've given since 1993:
    http://www.cfsrf.org.uk/images/stories/PDFs/Projects_Funded_CK.pdf
     
  4. Min

    Min Guest

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    Thank you for putting the record straight. Those are excellent studies.

    (It does seem a crying shame tho' to put someone in charge of studying pain in a neurological illness that the person believes to be a somatoform disorder. How can they study a symptom of an illness they don't believe in? )
     
    Last edited: May 21, 2014
  5. Wildcat

    Wildcat

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    Yes, the CFSRF did fund a lot of excellent studies, including Dr Jonathan Kerr's Gene Expression research.


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    The Chronic Fatigue Syndrome Research Foundation became a charity in 1992. The charity funded Dr Jonathan Kerr’s gene expression research, among other research.

    Numbers of patients, families and local ME groups did huge amounts of fundraising for the CFSRF over many years, in addition to making individual donations to the research charity.

    Previous CFSRF research is in the Research Library:
    http://cfsrf.org.uk/index.php?option=com_content&view=article&id=72:list-of-previous-research-projects&catid=37:previously-funded-research&Itemid=57


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    But, in 2013, some change occurred in the CFSRF published statements. The CFSRF suddenly jumped on the Science Media Centre bandwagon of portraying patients and “many patient support groups” as historically "aggressive towards scientists", as far back as the 1980s and early 1990s.

    The CFSRF retroactively claimed (on its website and in an interviewed article) that ‘many aggressive patient support groups’ were the cause of lack of ME research, and were the reason for the CFSRF being formed in the first place!

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    That’s preposterous, blatantly false, unprofessional, and a horrid thing to state.

    Unfortunately gullible readers probably believed that tosh.
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    What patient support groups? In the 1980s and early 1990s? Little local support groups who struggled to find funds for tea, biccies and photocopying? AFME? The MEA? AFME did not even become a charity until 1995. There wasn’t even any ME internet campaigning in 1992 when the CFSRF were formed.

    Why on earth would the CFSRF suddenly in 2013 (for the first time in its history) start blaming mythical bogeyman “aggressive patient groups” of the 1980’s and early 1990’s for lack of interest from researchers, AND claim that the reason the CFSRF was formed was to counter the influence of “patient support groups”?

    When it was patient support groups who have raised many thousands of pounds for the CFSRF over the years.


    I am struggling to understand why the CFSRF would kick its patient/carer fundraisers in the teeth that way.




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    The CFS Research Foundation website. ‘About Us’:

    http://cfsrf.org.uk/index.php?option=com_content&view=article&id=47&Itemid=28

    ‘….In 1993 there was only a small amount of research into the illness and that was not of the highest standard. The situation was made worse by the aggressive attitude of many support groups towards scientists and to the medical profession as well as towards each other. Naturally researchers were becoming wary of being involved in research in such muddy waters.

    The Foundation decided that a new attitude must be established so that CFS/ME was seen as a challenging illness which must be addressed with urgency by doctors and scientists. To this end the CFS Research Foundation decided that it should bring together the best minds to meet the challenge presented by this disease.’


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    And again, here, unsubstantiated accusations by the CFSRF of “aggressive patient support groups” in the 1980's and early 1990’s in this 2013 article

    http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=1921&Itemid=90

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    Last edited: May 21, 2014
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  6. Wildcat

    Wildcat

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    The CFSRF is a founder member of the UK CFS/ME Research Collaborative (UK CMRC) which was launched in April 2013.

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    At some point in 2012/early 2013 Dr Esther Crawley became a member of the CFSRF Research Committee, according to the CFSRF Trustees Report year ending March 2013. The Trustees Reports, including the Research Committees from 2009-2013 can be found in the yearly accounts on the Charity Commission site CFSRF listing. Charity number 1011900. Trustees Reports under ‘View Accounts’:

    http://www.charitycommission.gov.uk/find-charities/
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  7. Min

    Min Guest

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    No wonder AfME are so keen to take over.


    Can you imagine a cancer charity funding research into pain led by a researcher who believes cancer to be an 'abnormal illness belief'?


    What an inglorious end to a once excellent charity.
     
    Last edited: May 22, 2014
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