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the list AfME did not want us to see

Discussion in 'General ME/CFS News' started by Min, Nov 13, 2009.

  1. Min

    Min Guest

    The AfME Research Summit and the list they did not want us to see


    if you can't read it all. Reeves is on it

    Unfortunately our largest ME/CFs charity in the UK appears to collude in full with the Wessely school of psychologists, fully supports the fact that ME/CFS patients can only access psychological treatments & only funds and supports psychological research.

    Only the executive are members, everyone else is merely a subscriber to their magazine and has no voting rights and no AGMs.

  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    The report that came out of that meeting can be downloaded from Action for M.E.'s website here:

    http://www.afme.org.uk/res/img/resources/M.E. Research Summit Report FINAL.pdf

    Conference report
    M.E./CFS research summit workshop
    89 November 2006

    The Research Summit meeting was Chaired by Bill Reeves, who gave the keynote address.

    Note the following from Prof Peter White's address, summarised on Page 10

    "Barriers to success

    There are five challenges which need to be addressed:
    understanding the relationship between mind and body

    no one discipline owns the illness and can treat it alone

    it is an orphan illness and it is heterogeneous

    insufficient inter-disciplinary collaboration

    insufficient funding for pilot work

    as well as lack of funding, the hostile approach of some
    patient advocates can discourage potential researchers
    from becoming involved."

    "as well as lack of funding, the hostile approach of some patient advocates can discourage potential researchers from becoming involved."

    We've had this from Vivienne Parry (Sense About Science). We also see this from Dr Charles Shepherd (MEA) when attempting to stifle expression of legitimate concerns...

    ...this alleged perception has not discouraged Wessely, Chalder, Moss-Morris, Creed, Mayou, Hotopf et al from accepting funding, now has it?
  3. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Each of those papers you both linked to are an indictment of Reeves and Wesseley et al. Thank goodness for the WPI and their XMRV finding. It's going to be interesting to see where this goes from here.

    It's really a shame that AfME and the CAA were in cahoots with these jerks. At least the CAA has cut ties now with the CDC.

  4. Katie

    Katie Guest

    I'm going to write a proper reply to this but this sentence made me feel so sad for everyone in Britain with ME/CFS, including myself.

  5. Katie

    Katie Guest

    *sighs* I feel deflated.

    I know this is a report from the very heart of CBT/GET brigade who have cleverly branded ME/CFS to give the impression that it is neurological (WHO, WHO, WHO, just keep mentioning WHO, we don't actually have to believe, they have to believe it) while in the mean time asking us to look into the face of the watch they dangle in front of our face while encouraging us to make that walk a little longer today. I thought that there would be some mention of XMRV in the report but it was carefully managed out of the picture.

    I don't know what else to write. I was nice to read Nancy Klimas's bit, it was well done, she mentioned the need for a better definition but it will have had zero impact. Zero. And where was Jonathan Kerr? Surely he would be the go to guy along with Klimas about the cutting edge of ME Research? All that money spent on PACE, PRIME and whatever pointless acronym they could come up with? How do I feel about the way I'm being treated? I'm not being treated! I keep my head down, like many of us do and don't make a fuss.

    The psychiatrists have us here. Nothing will change until the XMRV studies can be replicated and even then, we've got a huge job ahead of us. I'm ready for that time, this can't go on.
  6. Min

    Min Guest

    AfME and the taxpayer funded Medical research Council are holding a joint 'research' (into Reeves/Wessely disease!) summit on the 19th and 20th Nov 09, but refusing to release he names of the participants in advance. I expect it will be the usual bunch of 'specialists' in somatisation.

    Suzie Chapman writes:

    "I have received, this afternoon, a further response from Ms Rosa Parker,
    MRC Corporate Information and Policy, in connection with my request for
    information under FOIA around the November MRC CFS/ME Expert
    Group Research Workshop.

    Part of my response - a request for a copy of the List of Participants who
    will be attending this meeting - was due for fulfilment, today.

    The Agenda and some additional information has already been supplied.
    [ http://wp.me/p5foE-2mj ]

    Ms Parker's response follows:

    [ The Revised Agenda with corrected times is available in PDF format at:
    http://wp.me/p5foE-2nu ]

    The MRC's response, 13 November:

    "Further to my email of 11 November 2009 I am now able to reply with regard
    to your request for:

    2] A list of participants for this event

    The MRC is intending to publish a list of participants for the workshop on
    the 19th and 20th November alongside the note of the meeting. This will be
    published on our website as soon as it is available following the workshop.
    I will send you a link to this information as soon as it is available.

    I have also attached a slightly revised copy of the agenda as there was a
    small typographical error in the version I sent to you on the 11th of

    I hope that you are satisfied that your request has been handled
    appropriately. If not, you may appeal using the MRC's complaints


    Well no, I'm not satisfied, and I'll be submitting an appeal on Monday.

    Suzy Chapman"

  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Min, it occured to me, this morning, that what I haven't been given by the MRC Corporate Information and Policy office is an explanation for the decision not to release the List of Participants for the Research Workshop prior to the event taking place. It could, in any case, be weeks/months before they publish the note of the meeting and the List of Participants on the MRC website.

    Usually with requests for information under the ACT, if information is being withheld the relevant clause is cited in the response.

    So rather that go straight to Appeal I shall first go back to Parker and request that the MRC states the clause from the FOI Act under which this information is being withheld.

    When I have this, then I'll proceed with an Appeal or lodge a formal complaint.

    On 13 November, Tate Mitchell flagged up, via Co-Cure, a new page on the MRC’s website:

    Declaration of interests for the CFS/ME Expert Group


    Interests for members of the Expert Group are declared under the following categories:

    Personal Remuneration (employment, pensions, consultancies, directorships, honoraria etc)
    Registrable Shareholdings and Financial Interests in Companies
    Research Income during current session (over 50k per grant)
    Major academic collaborations (national and international)
    Unremunerated involvement with and membership of medical, biomedical, pharmaceutical, healthcare provision or similar activities/organisations
    Political/pressure group associations
    Members are informed of the MRC policy of declarations of interest at the first meeting and asked to return their completed forms to the Secretariat.

    The interest declared to date are listed below.

    [Ed: Note one or two have yet to be populated.]

    [Click on links on MRC site to open Declarations of interest]

    Dr Charles Shepherd

    Dr Derek Pheby

    Dr Esther Crawley

    Dr Jonathan Kerr

    Professor Anthony Pinching

    Professor Hugh Perry

    Professor Ian Kimber

    Professor Malcolm Jackson

    Professor Peter White

    Professor Philip Cowen

    Professor Stephen Holgate

    Sir Peter Spencer
  8. Min

    Min Guest

    Good luck Suzy - the whole thing stinks.
  9. White Crawley Pinching Holgate Spencer

    Are all known immediately for their pro psychiatric views on 'CFS/ME'
    I imagine the rest of them on that list are just as corrupt. Even more sick is that Crawley woman advises the treatment of children! :mad: I remember back in 2001 I think, I read the AYME charity statement saying they thought the working party report was 'fair and balanced'. I got a copy of it, and it says that all children with CFS/ME should be refered to a psychiatrist. That's fair and balanced for psychiatrist, for sure - but outrageous for patients.

    England really is a terrible, crul place to live compared to other Western developed countries when it comes to health care. I wish I'd be born in the USA where they have rights and choice through private health.

    If healthy, I and everyone else from this hell hole would have better luck in Somalia armed to the teeth and take our chances. What was the chances of being born into a medical scandal that's stolen 2, 3 + decades of our lives and not even allowed 1 tablet to help with symptoms unless you write to an MP (Senator) or go to court? Amazing.

    Collectively these people have destroyed my life, and everyone elses in this country. Despair embraces the fallen - and the guilty cough on their arrogant taunts. They simply want and need us patients to die. This is Nazi doctrine: marginalise, watch the minority suffer - blame the minority, refuse to treat them and make them go away.

    When is this blind rhetoric going to stop? Never.

    All we can hope is with an XMRV blood test, many many patients will sue local NHS trusts for misdiagnosis of 'CFS/ME' when they had a neuro immune disease that government experts called a 'Life Style Choice' with no evidence patients with XMRV were mentally ill.

    Simple Gestapo tactics. Their idiotic labelling of 'CFS/ME' has created a huge legal issue here, as they have openly stated so many discriminatory and bigotted words against patients - they cannot reverse engineer history.

    This is they only positive point. So many of us: remember, have written down, collected, stored, published, disseminated ''quotes'' from these death bringers. That will be their downfall. Their hateful words, will be their demise.

    If they had kept their mouths shut it would have worked, but they are quoted as calling people with ME/CFS: disgusting, pond life, self deceptive, guilty, whiney, etc.

    Those words should never be spoken by any doctor in public about their patients. There is no 'excuse' why and how they ever would use these words either.

    If we aren't allowed to know who is going to the MRC meeting. We need to again, diligently write this down.

    Everthing, and I mean everthing they do against us needs to be saved.

    We must mirror those from the holocaust who chased after, and brough to justice the sadists in WWII who vanished into the community and all over the world. These people will do the same, and 'retire' very very quickly and keep their heads down.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Min, the MRC has become extremely sloppy with their processing of FOI requests.

    Several years ago, you used to be able to fill in an online form to request information. That would auto generate a reference number. There does not appear to have been an online form for some time - although sometimes I prefer to submit via email as the online forms that some organisations use often cannot accommodate formated text.

    When you submit an application to the MRC under FOI, these days, no reference number is allocated.

    Even if you ask for the request to be acknowledged, often they do not do this and you have to keep poking them for an acknowledgement.

    Also, most other orgs that I have dealt with under FOI, will, on receipt of the request, state that a response should be provided within 20 working days.

    The MRC does not always put that in writing. Other orgs have set out the exemption clauses under which information was being withheld, quoting from the Act and the MRC used to do this (eg when I requested information on the FINE Trial some years ago, and part of the request was fulfilled but the patient manuals were withheld).

    But Ms Parker, as you see, states that the List of Participants of the MRC CFS/ME Research Workshop will be posted online together with a note of the meeting (at some unspecified point in the future) but provides no reason for why this information is being withheld from me, at this point, and cites no FOIA exemption clauses.

    So rather than treat this as a formal request under the Act, which is how it had been submitted, Ms Parker has responded as though it were an informal enquiry - and that is not on.

    So I'll write to her on Monday.

    I will also submit an FOI request to UCL around the post grad XMRV project. But it will likely be 20 working days before a response is provided, since most of the orgs that I have dealt with have a policy of running it up to the wire.


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