Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Petition: Opposing MEGA

Discussion in 'Petitions' started by AndyPR, Oct 19, 2016.

  1. batteredoldbook

    batteredoldbook Senior Member

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    Am sorry to see Prof Coyne's words used to support opposition to MEGA. The man called me assh*le as I stood up to him for the way he treated people with M.E.
     
  2. Barry53

    Barry53 Senior Member

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    He can be a bit cranky. But highly charged endeavours can lead to relying on strange bedfellows.
     
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  3. Sean

    Sean Senior Member

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    In a war the choice of allies is limited.
     
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  4. lilpink

    lilpink Senior Member

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    You are not alone in that concern. Can you point to the particular reference you are unhappy with please?
     
    Barry53 likes this.
  5. batteredoldbook

    batteredoldbook Senior Member

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    Was referring to Invest in M.E's facebook last year where Prof Coyne called an M.E patient advocate "sick and crazy", told another person to f*ck themselves and then later told me that I was an assh*le when I asked him whether such an incident would happen again. [ ]

    I think people with M.E deserve better treatment.

    I repeatedly tried to raise the issue of abusive language in M.E advocacy with Tom Kindlon [ http://pwme.org/tom.html ], Dr David Tuller and many other well known M.E advocates. Most recently on virology blog: [ http://www.virology.ws/2017/07/03/t...out-professor-sharpes-special-ethics-seminar/ ]

    I have now given up waiting for them to publicly address the issue.

    Aside from being harmful to others, I think offensive behaviour drastically reduces M.E patient credibility. Certainly I think a lot less of those patients and advocates who throw personal insults, tell me swearing at people is ok, or stand in silence when I ask them to address the issue. After 30yrs of M.E I don't need further mistreatment in my life.

    During the long MEGA discussion here I tried to make it clear that I felt the views of 200 patient advocates were ignored by Professor Holgate and I challenged Dr Shepherd to address his colleague's behaviour. [ https://justpaste.it/10z39 ]. Elsewhere I asked Prof Ponting to explain how he could work with Prof Crawley when they fundamentally disagree on what makes good scientific methodology [ ].

    Ultimately, and with irony, I conclude that behaviour does keep people with M.E ill. Overall, poor quality behaviour from medicine, advocates and M.E patients creates a toxic political context where a rational and kind-hearted search for the scientific truth comes second to personal agendas.

    The single most important thing anyone with M.E can do to oppose MEGA is to challenge mistreatment, and to resist the temptation to mistreat others. People with M.E need rest, research and respect.

    All the best, PR.

    @batteredoldbook
     
    Last edited: Jul 26, 2017
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  6. lilpink

    lilpink Senior Member

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    Sorry you misunderstood me.. can you link to the specific areas of concern at the OMEGA site please ( OMEGA personnel are all very unwell and so it simplifies matters to be directed to specific places/ links)?
     
  7. batteredoldbook

    batteredoldbook Senior Member

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    I'm afraid I have limited power also. Please feel free to link to my post here on OMEGA if you think that will help.
     
  8. AndyPR

    AndyPR Senior Member

    >We vote 'no confidence' in MEGA research for M.E.

    >A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

    In addition
    • They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. o_O
    • The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
    • The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.
    • George Davey-Smith, the "heavyweight scientist" in MEGA has resigned from the editorial board of the Journal of Health Psychology citing the publication of "anti-science" articles that criticise PACE.

    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

    3,284
    have signed so far.
     
    Jo Best, lilpink, slysaint and 2 others like this.
  9. lilpink

    lilpink Senior Member

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    Invest in ME July Newsletter sent out today to those who have signed up for such, and in reference to the NICE Consultation:

    ""Having read the whole document it became clear to us that there was little point in being nice to NICE or to give support to organisations such as cmrc & MEGA that seem to us to have been set up to delay any real progress and keep people busy and forever hopeful.
    We prefer to say it straight and not play along the silly establishment games which merely maintain the healthcare scandal typified by the PACE Trial, embellish the egos and careers of some commentators and keep patients in the scandalous status-quo.
    "

    Quite so.

    I imagine the full newsletter will be uploaded here in due course: http://www.investinme.org/newsletter.shtml
     
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  10. Jo Best

    Jo Best Senior Member

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    From 'Looking at the Evidence': https://spoonseeker.com/2017/08/05/looking-at-the-evidence/

    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
     
    lilpink, slysaint, Jan and 3 others like this.
  11. AndyPR

    AndyPR Senior Member

    >We vote 'no confidence' in MEGA research for M.E.

    >A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

    In addition
    • They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. o_O
    • The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
    • The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.
    • George Davey-Smith, the "heavyweight scientist" in MEGA has resigned from the editorial board of the Journal of Health Psychology citing the publication of "anti-science" articles that criticise PACE.
    • Crawley thinks that the Lightning Process can help kids with ME, having subjected them to it in the SMILE trial.
    • She also has claimed that the MEA opposes any treatment for kids with ME.

    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

    3,298
    have signed so far.
     
    lilpink, Maggie21, JaimeS and 6 others like this.
  12. Jo Best

    Jo Best Senior Member

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    Last edited: Sep 26, 2017
    Maggie21, JaimeS, Jan and 5 others like this.
  13. lilpink

    lilpink Senior Member

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    It's exactly one year since OMEGA went live. It has been an interesting 12 months. Has OMEGA achieved its remit? Very probably... at least at the one year mark Esther Crawley has had two MEGA proposals turned down, from Wellcome and from the MRC. Has she finished trying to finagle funding for MEGA? Doubt it... remember OMEGA is still open for business until we can be sure its reason to exist is no longer an issue.


    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
     
    Last edited: Oct 19, 2017

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