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Contact AfME, the ME Association and MR Research UK regarding the CMRC support of Crawley

Discussion in 'Action Alerts and Advocacy' started by AndyPR, May 15, 2017.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    So the CMRC has now confirmed this to David Tuller
    which he has written about in his latest blog post - http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/

    This is despite the awful anti-patient speech that she gave at the recent BRS conference - see http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/

    The statement issued by the CMRC concludes
    [My bolding]

    Surely if they wanted to alleviate the suffering of ME patients then they would make an attempt to explain away the speech by Crawley or even actually condemn the patient insulting, data hiding encouraging and libellous speech itself (OK, I know that second option is never going to happen).

    In all of this, we haven't heard a thing from the three patient charities involved in the CMRC - Action for ME, the ME Association and ME Research UK.

    We can encourage them to commit to a public position by contacting them individually to express our own view on this situation. Please, for the moment at least, be firm but polite, as chances are the person you will be directly contacting will not be the person responsible for decision making.

    Action for ME:
    Facebook https://www.facebook.com/actionforme/posts/ - Can post to their page or message them
    Email questions@actionforme.org.uk
    ME Association
    ME Research UK
    Facebook https://www.facebook.com/MEResearchUK/ - Message only.
    Email meruk@pkavs.org.uk (Yes, this is their listed email address)
    Please remember that we want the organisations that claim to speak and represent us to make their positions known, my suggestion is at the moment we ask for this and explain what our views are.
     
    Binkie4, Valentijn, Cohen2 and 16 others like this.
  2. Yogi

    Yogi Senior Member

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    #MEAwareness Day (May 12) campaigning should not be for a day but for life.

    Continuation of the #MEAwareness Day Campaign to get everyone to:

    Contact CMRC charity members, AFME, ME Research UK and ME Association and ask whether they support ME patients or Esther Crawley (1) and her smearing of ME patients and Dr David Tuller(2) (3).

    (Ref 1) http://me-pedia.org/wiki/Esther_Crawley
    (Ref 2) See thread: http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
    (Refs 3) http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/
    http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/
    http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/
    http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/


    ****2 simple requests.*****

    1. Contact CMRC charity members, AFME, ME Research UK and ME Association and ask whether they support ME patients or Esther Crawley (1) and her smearing of ME patients and Dr David Tuller(2) (3).

    2. Demand the ME charities support ME patients and remove Esther Crawley from the CMRC.

    If the CMRC fails in that:

    Alternative 2. Demand that the ME charities support ME patients and resign en masse from CMRC and all associated projects including MEGA project.



    These are the contact details. Phone in, write a letter, contact by email, send a message by Facebook and Twitter. Or do all of these.

    Action for ME

    Action for M.E., 42 Temple Street
    Keynsham BS31 1EH

    Fundraising team
    t: 0117 937 6626
    e: fundraising@actionforme.org.uk

    Information and support
    t: 0117 927 9551
    e: questions@actionforme.org.uk


    Membership
    t: 0117 937 6626
    e: membership@actionforme.org.uk

    https://en-gb.facebook.com/actionforme/
    https://twitter.com/actionforme
    https://twitter.com/SonyaChowdhury


    ME Research UK
    http://www.meresearch.org.uk/about-us/contact-us/

    ME Research UK
    The Gateway, North Methven Street
    Perth PH1 5PP, UK
    Telephone: 01738 451234
    E-mail: meruk@pkavs.org.uk
    Facebook: www.facebook.com/MEResearchUK


    ME Association
    ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks
    MK18 4DF

    Tel: 01280 818968 between 9.30am and 3pm, or email admin@meassociation.org.uk
    Tel: 01280 838 964

    https://twitter.com/MEAssociation

    Please Note: Good charities such as Invest In ME, Tymes Trust and 25% Group (that actually support patients in their actions and who knew that the CMRC was bad for patients and for that reason did not sign up at the beginning) should also publicly make a statement.

    There is no reason to contact them but hopefully they will put out a statement regarding Esther Crawley’s reprehensible behaviour. This will further show to everyone the contrast with the real charities that support ME patients and the charities that claim they do but actually in practice do not.

    @JaimeS - Can we get #MEAction to support this campaign on the platform.
     
    Last edited: May 15, 2017
    ahimsa, JaimeS, Countrygirl and 2 others like this.
  3. trishrhymes

    trishrhymes Senior Member

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    Good idea, Andy. Done for MEA and AFME, will do for MERUK. I seem to remember seeing on another thread someone indicated the MEA might be preparing a response.

    I suggest, for those with too little energy to frame a comment, if they are on facebook, just going in to the visitor posts and 'liking' the comments already there would be helpful.
     
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  4. trishrhymes

    trishrhymes Senior Member

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  5. slysaint

    slysaint Senior Member

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  6. Yogi

    Yogi Senior Member

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    I think all contact is important. Emails can just be ignored. But they will know and understand the anger if people start phoning in as well.
     
  7. slysaint

    slysaint Senior Member

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    What about BACME? they are also on the CMRC board.
    "
    Besides the members, the CMRC Board includes observers from all three
    mainstream funders, the SMC and BACME."

    https://www.bacme.info/

    The British Association for CFS/ME (BACME) is the professional body for clinicians and therapists who are involved in the management of patients with CFS/ME.

    the only patient support groups they list are:

    The Association of Young People with ME (AYME) is a UK charity that provides support for children and young people aged up to 26 who have M.E./CFS.
    Association of Young People with ME - www.ayme.org.uk
    The Sussex & Kent ME/CFS Society is a major regional charity which aims to inform, support and represent people affected by CFS/ME in the South East of England.
    Sussex & Kent ME/CFS Society - www.measussex.org.uk
    reMEmber was formed in 1999 to secure good medical services for people who have CFS/ME.
    reMEmber - www.remembercfs.org.uk/cfs.htm

    treatment/guidelines
    https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf

    specialist services:
    https://www.bacme.info/specialist-services

    just more info to add to the pile
     
  8. trishrhymes

    trishrhymes Senior Member

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    On the MEA facebook page there is a response to our comments:

    'ME Association Message from Dr Shepherd:

    I know that some of our members have serious concerns and are raising questions about the content of slides that accompanied a presentation that was given by Professor Esther Crawley to the British Renal Society meeting and the response that has been made by the CMRC.

    I am currently involved with discussions on this issue with both CMRC Board members and with MEA trustees.

    I have also been in correspondence with the US journalist and academic David Tuller.

    At the moment I do not want to add to what I have already said about this matter on social media but will do so later in the week.'
     
  9. trishrhymes

    trishrhymes Senior Member

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    Response to our facebook posts from the MEA:

    'ME Association Message from Dr Shepherd:

    I know that some of our members have serious concerns and are raising questions about the content of slides that accompanied a presentation that was given by Professor Esther Crawley to the British Renal Society meeting and the response that has been made by the CMRC.

    I am currently involved with discussions on this issue with both CMRC Board members and with MEA trustees.

    I have also been in correspondence with the US journalist and academic David Tuller.

    At the moment I do not want to add to what I have already said about this matter on social media but will do so later in the week.'
     
  10. Yogi

    Yogi Senior Member

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    It has been over two weeks and that is not good enough. In fact it is a disgrace of a statement. This is a black and white issue if there ever was. No grey areas. Very easy decision -support ME patients over the disgraceful offensive smear campaign behind our backs by Crawley.

    I suspect (but I hope not) that he will be putting pressure on David Tuller to tone things down to dampen things down for the moment as it is making the charity collaborators position in working with CMRC and Crawley, Holgate et al very difficult to justify right now in front of patients.
     
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  11. trishrhymes

    trishrhymes Senior Member

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    I don't think that's fair at this stage. It takes time to contact all the relevant people and reach a considered decision on what if any action to take or statement to make. I think we should wait until the statement later in the week. Individuals can make rapid responses, organisations need time to consider and come to a consensus on both what they think (easy) and what to do about it (harder).
     
  12. trishrhymes

    trishrhymes Senior Member

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    I've just had a response to my Facebook messenger contact with MERUK. Here's what they said:

    'Dear Andy, The trustees are presently reviewing all the statements and blogs and will be discussing matters once they have the opportunity to speak with each other. Stewart.'

    I'm glad they are taking it seriously. I think it is reasonable that they cannot respond immediately , given that they are a small charity focused on funding research, and probably run by people very busy in other jobs.

    Edit: Just in case you're confused, my name is Trish, not Andy. I expect Andy had the same response, and, not unreasonably, they have simply copied and pasted. I am amused, not offended.
     
  13. AndyPR

    AndyPR Cookies for Tired Sam

    Haha, I got exactly the same and would assume that you received a copy and paste of what was sent to me.

    I've replied to it asking if a timescale can be put on their plans.
     
  14. trishrhymes

    trishrhymes Senior Member

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    I had a very nice apology the next day from the MERUK representative for calling me Andy. I told him, no problem, I thought it was funny. He assures me they are taking it seriously and discussing what to do.
     
  15. AndyPR

    AndyPR Cookies for Tired Sam

    Lol.

    That reminds me, I had this reply as to what timescale there might be for a response from them, received it yesterday.
     
  16. trishrhymes

    trishrhymes Senior Member

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    MERUK has resigned from the CMRC. Message on their facebook page:

    'ME Research UK & UK CFS/ME Research Collaborative

    ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect.

    ME Research UK exists to fund biomedical research into ME/CFS, to find its cause, to develop effective treatments and ultimately to discover a cure. In 17 years, it has funded 45 specific research projects in the UK and overseas, more than any other single organisation in the world outside the American continent.

    The decision to resign from the Collaborative was not taken lightly but reflects the Trustees’ wish to focus on the charity’s key aims. ME Research UK remains committed to drive increased interest and investment into biomedical ME/CFS research and looks forward to continuing to work constructively with organisations, charities, researchers and funders in the future.'
     
  17. Barry53

    Barry53 Senior Member

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    A pretty clear statement of concerns.
     
  18. BurnA

    BurnA Senior Member

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    ladycatlover and trishrhymes like this.

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