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AfME: Discussions with CFS Research Foundation

Discussion in 'General ME/CFS News' started by Firestormm, May 16, 2014.

  1. Esther12

    Esther12 Senior Member

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    With PACE, AfME has an ideal way of showing that they have changed and now recognise that patients deserve to be spoken to honestly and with respect. Their insider role means that they're in a powerful position to criticise the way in which results were misrepresented and spun, and call for the release of results for the outcome measures from the protocol. They keep refusing to do so. They should be calling for the release of more information... instead they're providing statements to QMUL for fighting against FOI requests and help keep patients in the dark.

    I just re-read the statement...

    How could it encourage hope?

    Edit: My comments in bold.

    As a more minor aside about this project (the specifics of which I actually think are less important that the politics): Why not use other patient groups who suffer from problems with pain as a control? Otherwise, how will you know whether you are increasing your understanding of why patients with ME/CFS patients suffer so much pain, rather than just finding normal responses to chronic pain? As the project is currently designed, it looks very likely to end up with results that are of no value to patients, but can be used to justify more manipulation/rehabilitation from White.
     
    Last edited: May 18, 2014
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  2. Wildcat

    Wildcat Senior Member

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    Chickadee9 said:
    "Those of you who actually bothered to read the statement would have noted that 1. This project was initiated by the CFSRF last year when there was no connection with AfME...."

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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, of which AFME CEO Sonia Chaudhury is Secretariat.

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    At some point in 2012 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/

    .
     
    Last edited: May 18, 2014
  3. Wildcat

    Wildcat Senior Member

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    The Chronic Fatigue 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 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.



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





    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.’



    And again, 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 19, 2014
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  4. Min

    Min Senior Member

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    It absolutely beggars belief that AfME dismiss genuine concerns as
    They appear not to have noticed that the illness they purport to represent is classified as neurological.
     
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  5. Valentijn

    Valentijn Activity Level: 3

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    "Foolish anti-psychiatry" was part of comments made by @Esther12 , not the original text.
     
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  6. Min

    Min Senior Member

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    OK thanks, sorry. AFME ARE still back in bed with Prof White tho'.
     
    Last edited: May 18, 2014
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  7. Esther12

    Esther12 Senior Member

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    Thanks for that Wildcat. It would be interesting to know who wrote that.
     
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  8. Wildcat

    Wildcat Senior Member

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    Esther wrote: "Thanks for that Wildcat. It would be interesting to know who wrote that."


    Yes. It would be interesting. Three guesses?

    Vilifying, defaming and blaming the patients is a thoroughly disgusting trend.

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  9. Firestormm

    Firestormm Guest

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    From the original AfME statement at the top of this thread:
    I came across this other article published recently that I thought interesting and perhaps related to the research mentioned and described in the link:
     
  10. Graham

    Graham Senior Moment

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    Well I'd be interested in connecting me and Prof White to something that generates pain to see which one of us is more sensitive. I think I could take quite a lot if I thought that he was suffering too!
     
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  11. Firestormm

    Firestormm Guest

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    7 July 2014 Action for ME Facebook

    The link above on the website reads:
     
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  12. Chickadee9

    Chickadee9

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    The problem I have with this is that maybe some stopped giving money to CFSRF when the project was announced but there must have been many - the majority - who continued to donate to raise the amazing sum of £230,000. Probably because CFSRF had a good record of supporting biomedical research over a period of 20 years and they decided to trust them. That's my guess anyway. And maybe there are people with ME out there who are not on this or any other forum and are not plugged into the issues in the way people on here are?
     
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  13. Chickadee9

    Chickadee9

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    Don't understand your question Peggy Sue? They obviously think this project is a good idea otherwise why would they have contributed in the first place? We may find it amazing that they backed this project, given there are lots of other good projects they could have supported, but the fact is that people gave the CFSRF money for this project, knowing full well what it was on and who was doing it. As I said elsewhere, I believe they must have trusted Anne Faulkner, given her track record over 20 years in getting money together for biomedical research into ME. And remember she was doing it when others weren't, in the dark ages of the late 1990s and the 2000s!
     
  14. Firestormm

    Firestormm Guest

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    I think you might find that some people (donors) gave money to the CSFRF without knowing where it was going - but I might be wrong (it's been a while though I can think of one large example). Once you donate to an organisation you don't really have control over which project it ends up funding. On the other hand this project did eventually become a stand-alone funding project: but when this all took place I honestly can't remember. CSFRF were one of those organisations I was aware of but they never really entered the limelight. It truly is an astonishing sum of money to raise and I hope the research proves useful. I would like to have seen AfME be able/willing to take more of a closer interest in this study, I'll try and find out what the score is tomorrow.
     
  15. Firestormm

    Firestormm Guest

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    In the original statement (post #1 above) Sonya said:
    I asked about this on Facebook and was referred earlier to this which Queen Mary's College have now signed:
     
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  16. Esther12

    Esther12 Senior Member

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    Would be interesting to know if Action for ME think that PACE lived up to those standards?

    Would they be satisfied if this study was carried out in as careful and ethical a manner as PACE?
     
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  17. user9876

    user9876 Senior Member

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    I wonder who gets ownership of any IP if I were action for ME I would demand ownership and reasonable rights to use background IP from QMU.
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It is also IMO very important to include ME patients like myself who don't suffer significant pain. Otherwise how will they be able to disentangle pain response from other symptoms and physiological/neurological aspects?
     
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  19. worldbackwards

    worldbackwards I talk because I can

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  20. Min

    Min Senior Member

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    Esther Crawley' s becoming a member of their Research Committee in 2012 perhaps explains their complete turnaround and their decision to fund 'research' conducted by Prof White, thank you.


    I remain shocked that AfME are once again involved with his 'research' after the charity's involvement in PACE.
     
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