New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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MEGA research for M.E./CFS: White & Crawley listed as involved

Discussion in 'Petitions' started by AndyPR, Sep 28, 2016.

  1. TiredSam

    TiredSam The wise nematode hibernates

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    By the way, wasn't it "this harassment" that led to the downfall of the PACE trial? Or was that another kind of harassment?
     
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  2. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    Keep in mind that people sign public letters for all kinds of reasons that have nothing to do with the letter's actual agenda. (Friendship, institutional loyalty, currying and replaying of favors, wish to appear socially conscious and active, hunger for publicity, confusion about the letter's contents...)

    Attempts to deduce anything about the motivations of individual signatories from the list of signatures are extremely tenuous at best.
     
  3. Wildcat

    Wildcat

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    That wasn't any old public spirited public letter. It was unique; it defamed patients.
    .
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    Nothing at all tenuous in deducing that Stephen Holgate, Paul Little, and George Davey-Smith, far from being in danger of being scared off, are fully aware of the politics of ME because they were signing letters with their pals Wessely and Crawley four years ago, and were either misled or bought into the militant patient narrative.
     
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  5. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    Maybe I wasn't clear. I don't mean to suggest that you cannot make plausible inferences about the signatories' motivations. I mean that you cannot make inferences about someone's motivations simply on the basis of the fact that they signed an open letter.

    It doesn't actually say that the patients have anything to do with the alleged "campaign of harrassment". Some of the signatories may have said that elsewhere, but the letter itself does not specify.

    By the way, there is nothing unique about it. There is a long history of animosity between the psychiatric establishment and patient advocates in the UK. The thing that makes this case different from the rest is just that ME/CFS is not properly in psychiatry's purview.
     
  6. Yogi

    Yogi Senior Member

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    You got it right.

    What shall we give you - a Bob??

    Which reminds me I have not seen him for a few weeks. Hope he's okay as he is usually a frequent visitor here? Hello @Bob ;)

    Are you in Germany? If so you have already won the prize. After Brexit we have isolated ourselves from the rest of the Europe and may have quarantined the craziest of the UK psychiatrists from you!


    You're right the 5 from MEGA have complained of harassment towards themselves and their colleague Weasely but in 4 years it had not stopped them from ME/CFS research.

    Wessely had been complaining that harassment has put him off research since 2001 but he is still involved.

    1. In fact as the funding report showed those who were most vocal about harassment Peter White and Esther Crawley obtained the most find and did most of the research.

    http://forums.phoenixrising.me/inde...itutional-funders-over-the-past-decade.47096/

    2. One would based on their claims find it would be negatively correlated. Allegations of harassment and research funding obtained and conducted in fact is strongly positively correlated.

    3 Therefore statistically one can conclude that those alleging harassment were not put off ME CFS research.

    4. Do the BPSers have thicker skin than other scientists??
    None of the omics scientists will be scared off reasonable concerns being raised and we should not be intimated into not doing so!

    5. This harassment and militant narrative serves a purpose - to silence and control criticism, however reasonable it may be, and of course the patients.


    Quick Quiz 2: How many of these were involved in PACE trial?

    BPS school/PACE/Fine/CMRC/Magenta/MEGA are just different shades of the same psychiatric ideology.

    With MEGA marketed as it has been they will be able to and have as can be seen be able to sell it as more palatable to the patient community. I am surprised that some of our advocates have not been taking a stronger stance.

    I will say something about this later on.
     
    Last edited: Oct 7, 2016
    Snowdrop, Alison2, Jan and 5 others like this.
  7. edn

    edn

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    I agree with you; I think far more dangerous would be a backlash against this project which runs the risk of putting good researchers off the area. It's tough getting funding for research, especially big basic science projects like this (even more so now we've lost the E.U. funding stream) so to get the funding they will need to work hard and need maximum support to get it. Were I in there shoes (and I have been in the past!) and saw the response I would be seriously inclined to go to some other area where my efforts would be appreciated.
     
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  8. Wildcat

    Wildcat

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    The CMRC have pandered to White and Crawley from the outset - not for our benefit.

    White and Crawley have not contributed to understanding ME at any point - but have only lead, and in the case of Crawley, continue to dominate, the construction of ME as vague fatigue.

    White and Crawley have themselves consumed obscene amounts of research funds over the decades, which have not at any point contributed to the understanding of ME, or to potential treatment.

    .
    White and Crawley are surplus to requirements.



    .
     
    Last edited: Oct 7, 2016
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  9. lnester7

    lnester7 Seven

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    what did their conflict of interest declaration documents say???
     
  10. Wildcat

    Wildcat

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    The CMRC Charter:

    https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

    "3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate."

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




    There is history in the CMRC - of the invitation by Professor Holgate to Professor Wessely to suggest researchers, and of damaging and manipulative interference in the internal affairs of the CMRC by the Science Media Centre, under the guise of 'Observers'.

    https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0
    .


    That is why the CMRC and its proposals are under such intensive scrutiny by the UK patient/activist population.
    .
    .
     
    Last edited: Oct 8, 2016
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  11. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    They have. Just not in the way they had intended. ;)
     
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  12. Cheshire

    Cheshire Senior Member

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    New Davey-Smith's paper. Could be of relevance here.

    Collider Scope: How selection bias can induce spurious associations

    http://biorxiv.org/content/early/2016/10/07/079707
     
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  13. Countrygirl

    Countrygirl Senior Member

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  14. Yogi

    Yogi Senior Member

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    I am deeply concerned at this MEGA project and that we are all being misadvised into supporting it.

    I am very skeptical that a letter will achieve the result we are looking for given the past decades of history of patients views and letters being ignored and that it will be similarly not be responded to adequately.

    Dr Charles Shepherd of the MEA advised us all on PR that a letter should be sent instead of a counter petition. I am sad that patients are spending time writing a letter which I really appreciate but feel we are all very sick and our patient representative charities should not have left us in this position and they themselves should be raising these issues instead as the issues were all foreseeable.

    I asked @charles shepherd a reasonable and important question. The question was if a counter petition was such a bad idea why is the original CMRC petition a good idea given many were misled into signing and why can't the original petition not be terminated until the issues are resolved?

    I assume @charles shepherd has missed my question which I specifically raised two times when you were on the forum. I will tag you again in case you had missed it.

    I was hoping you could respond to it please.

    Thanks very much. I look forward to your response.
     
    Last edited: Oct 10, 2016
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  15. AndyPR

    AndyPR Senior Member

    #MEAction UK are using a poll on Facebook to judge patient opinion about MEGA

    https://poll.fbapp.io/cmrc-mega-study-poll/obmxg5?from=user_link

    I don't know for certain but I would think that non-Facebook users won't be able to access this, if somebody who doesn't have Facebook could let me know then I'll update this.

    ETA: As @Hutan confirms below, you do need Facebook to access it.
     
    Last edited: Oct 17, 2016
  16. Hutan

    Hutan Senior Member

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    Yes, you can't submit the completed poll until you log in to Facebook.
     
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  17. AndyPR

    AndyPR Senior Member

    More on MEGA - blog by mrspoonseeker (sorry, can't remember your PR name)

    https://spoonseeker.com/2016/10/19/more-on-mega/
     
  18. Yogi

    Yogi Senior Member

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    http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-17#post-773642

    I am very ill like many people here and would have hoped that this would not be necessary.

    I have been deeply concerned and disturbed about the MEA and it encouraging others to support MEGA and sign the petition.

    I asked 3 times on October 5th and October 10th the same question when @charles shepherd was on the forum but was ignored each and every time.

    http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-16#post-771945

    http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-13#post-771697


    I asked the last time on 10 October and had given him another two weeks to respond but no response had been received by 13 October. He has said there should be reasonable and constructive criticism and communication. However the communication has been very poor.

    Now he may feel that he does not and need not respond to me. That is the MEAs and his pregorative. However what I find odd to say the least is that the MEA's medical advisor has repeatedly come on to PR to strongly advise and steer us towards supporting MEGA and sign the petition but not question MEGA and advised very strongly not to set up a counter petition but instead send an impotent open letter in the hope that MEGA and CMRC will engage in communication with us.

    I have bit my tongue but feel I must speak out especially that the MEA medical advisor had continued to misadvise regarding MEGA and not respond to reasonable questions but instead guide the community to support MEGA and sign the petition prematurely.

    So @charles shepherd I would hope you could respond to my reasonable question of why the original petition is necessary and why it is a good idea given a counter petition is such a bad idea.

    I am also concerned about some unfounded statements being made to ensure support MEGA.

    I put this out again so everyone can judge for themselves.

    I will not hold my breath!
     
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  19. Yogi

    Yogi Senior Member

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  20. AndyPR

    AndyPR Senior Member

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