Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Petition: Opposing MEGA

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

  1. Jo Best

    Jo Best Senior Member

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  2. Jo Best

    Jo Best Senior Member

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    Assuming Opposing MEGA is one of the two petitions mentioned in this slide.
    Opposing MEGA was also linked to in one of the articles by David Tuller on the Virology blogs pictured in the slide. (https://opposingmega.wordpress.com/2016/11/23/dr-david-tuller-explains-why-many-oppose-mega/)
     
    MEMum, Jan, dangermouse and 3 others like this.
  3. Yogi

    Yogi Senior Member

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    100% agree. Charities who are involved with EC need to call out her abuse and sever all links with her immediately.

    This is the next step.

    Hopefully these ME charities will immediately after the bank holiday make statements.

    I will tag @charles shepherd here but hopefully the MEA have already prepared their statement.
     
    Jan, Cornishbird, dangermouse and 5 others like this.
  4. Binkie4

    Binkie4 Senior Member

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    We should learn tomorrow what AfME are going to do about signing the letter to 'Psychological Medicine'.

    The Trustees' meeting was on Fri, and they said they would publish the response this week. ( @AndyPR )

    I very much hope they will join the other signatories just as they finally did with the letter about releasing the PACE data.

    Better late than never and the tribunal commented that the ME charities unanimously wanted the data released.

    Waiting .........with expectation........which may be a bit daft??
     
    Jan, dangermouse, slysaint and 6 others like this.
  5. batteredoldbook

    batteredoldbook Senior Member

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    M.E patients can stop MEGA any time they like. They simply have to move into opposition to the charities involved. Eg: I moved into opposition to the MEA after Dr Shepherd chose not to address my question (above).
    However, it will be very hard to challenge current medical misbehaviour while people with M.E refuse to address their own.
     
    Last edited: May 1, 2017
    BurnA likes this.
  6. 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.

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

    3,179
    signatures
     
    Cornishbird, Jo Best, MEMum and 3 others like this.
  7. Sean

    Sean Senior Member

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    That, plus explain and apologise for their role – witting, willing, or otherwise – in providing the sole piece of cover for PACE to dump actometers as an outcome measure, after PACE had purchased the actometer units, and collected the baseline data.

    This was one of the most critical and disturbing failures in the way PACE was conducted. There is no conceivable reason for dropping that objective outcome measure.

    Over to you, AfME...
     
    Jan, Binkie4, Cornishbird and 3 others like this.
  8. Esther12

    Esther12 Senior Member

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    Still waiting...
     
    Binkie4 and Valentijn like this.
  9. Jo Best

    Jo Best Senior Member

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    Trial By Error, Continued: An Open Letter to the Board of the CFS/ME Research Collaborative
    8 MAY 2017
    by David Tuller, DrPH
    http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/

     
    Robert 1973, Jan, Cornishbird and 5 others like this.
  10. Barry53

    Barry53 Senior Member

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    UK
    Cornishbird likes this.
  11. AndyPR

    AndyPR Senior Member

    Well, I guess you could report Jo's post to the admins to ask them to do it or you could create it? Jo has obviously posted it in here as it relates to the petition itself.
     
    MEMum and Barry53 like this.
  12. Binkie4

    Binkie4 Senior Member

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    @Esther12

    I have just posted another request on the AfME visitor fb board asking for the Board's response re the letter to Psych Medicine.

    Have pointed out that it is a matter not just for them but the whole ME community that we stand together, and reminding them that the Tribunal pointed out that all the ME charities had acted together in requesting the Pace data which makes it a point of considerable significance.

    Any ideas on why the hold up?

    EDIT -in case anyone wants to read the comment, it's posted as a comment under 'Lyn gillan'. I fact there seems no more room for people to post as a visitor because there have been so many posts already.
     
    Last edited: May 8, 2017
    ukxmrv, AndyPR, Jan and 1 other person like this.
  13. slysaint

    slysaint Senior Member

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  14. Jo Best

    Jo Best Senior Member

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    Hi all and thanks @Barry53 and @AndyPR yes, I was just selecting the quote about the petition for the benefit of / relevance to this thread and thanks @slysaint for the links to the thread/s about the blog. :thumbsup:
     
    MEMum, slysaint, AndyPR and 1 other person like this.
  15. AndyPR

    AndyPR Senior Member

    Stephen Holgate revealing his true colours, albeit inadvertently. This shows that there is no chance of removing Crawley from MEGA while the same old faces are involved.

    http://www.virology.ws/2017/05/10/trial-by-error-continued-cmrc-to-virology-blog-fk-off/
    Click the link to sign the Opposing MEGA petition - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
    3,201 signatures
     
    Jan, Barry53, Hutan and 4 others like this.
  16. Jo Best

    Jo Best Senior Member

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  17. Yogi

    Yogi Senior Member

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    CripTheVoteUK also promoting OMEGA.




    Another bunch of vexatious, mental-health stigmatising, anti-disability people fighting against our beloved Saint Stephen Holgate and Sister Esther Crawley.

    http://cripthevote.blogspot.com
     
    Cornishbird, Jo Best, Binkie4 and 6 others like this.
  18. 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.

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

    3,226
    signatures
     
  19. Jo Best

    Jo Best Senior Member

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  20. Binkie4

    Binkie4 Senior Member

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    @Jo Best @AndyPR

    Have just posted on AfME 's fb page a question re this and the letter to Psych Medicine.
    I think it is important that individuals make known their views to charities.
     
    Jan, Jo Best, dangermouse and 2 others like this.

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