Petition: Opposing MEGA

Jo Best

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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.
Thanks for letting me know.
I'm blocked by AfME on Facebook and Twitter, but it was thanks to people like yourself posting on their Facebook that my eyes were opened to what's really been going on with these mainstream UK ME charities.
 

AndyPR

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>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

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Jo Best

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Trial by Error, Continued: My Letter to the University of Bristol
14 JUNE 2017
By David Tuller, DrPH
http://www.virology.ws/2017/06/14/trial-by-error-continued-my-letter-to-the-university-of-bristol/

This morning I e-mailed the following letter to Sue Paterson, the University of Bristol’s Director of Legal Services and Deputy University Secretary, to protest Professor Esther Crawley’s accusation that I libeled her in blogging about her work. I cc’d the office of the university’s vice-chancellor, Professor Hugh Brady.
I have not cc’d Professor Crawley on this letter. Because she has declined to respond to my recent requests for an explanation and my offers to publish her full statement on Virology Blog, I see no point in further efforts to communicate with her. I therefore trust you will convey to Professor Crawley the concerns I have expressed here on behalf of Professor Racaniello and myself, as well as our determination to keep pursuing this investigation.

Sincerely—

David Tuller, DrPH

Source: http://www.virology.ws/2017/06/14/trial-by-error-continued-my-letter-to-the-university-of-bristol/
 

Demepivo

Dolores Abernathy
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@Esther12 I agree that PR members should have contact with the MRC on MEGA & related matters.

The advocacy groups have had a positive impact on Francis Collins, Head of the NiH, in the US.

Anybody: who is the Head of the MRC?
What is their background?
 

AndyPR

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This is the response from David Marks, editor of the Journal of Health Psychology, to George Davey-Smith's resignation from the editorial board which, apparently, is due to GD-S belief that the recent PACE critiques are "anti-science". Now where have we heard that idea before, that any criticism of any work by the BPS cult is anti-science?? So if anybody was hoping the involvement of GD-S in MEGA would guarantee rigorous scientific standards in anything MEGA does then you might need to rethink that idea.


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

Demepivo

Dolores Abernathy
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This thread is now 90 pages long! (Apologies if the questions below have already been answered)

*Has any individual or organisation contacted the MRC about concerns with the MEGA application to the MRC Tissue programme?

*Any news emerging about the MEGA application?
 

Esther12

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So if anybody was hoping the involvement of GD-S in MEGA would guarantee rigorous scientific standards in anything MEGA does then you might need to rethink that idea.

Sign the petition here https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
That was my thought too. While being opposed on balance, I was conflicated on MEGA, but it's become completely clear that MEGA is a project that will be used against patients to try to reinforce the positions of people like Crawley and undermine their critics.
 
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AndyPR

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Guiding the lifeboats to safer waters.
>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 due to 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

3,242
signatures
 

Jo Best

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And from the petition covering letter: https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607
It will not suffice for MEGA or CMRC to reassure research funders that patients are represented on their steering and monitoring committees and advisory groups or that patient concerns will be taken on board. Such measures have not served the best interests of ME/CFS patients over decades past and there is no reason to suppose there will be any change in this position going forward. Indeed great harm has been caused to many ME/CFS patients with the same establishment charities involved as are currently represented in the CMRC.
 

lilpink

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Jo Best

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This is such good news. I wonder if we'll see a reciprocal complaint made against the person who made this vexatious complaint in the first place?
I wonder how much tax-payer money it cost to investigate this vexatious complaint.

The 2011 complaint against CMRC/MEGA Esther Crawley for research conduct is referenced in the NICE CG53 surveillance consultation document (GMC hadn't addressed all the matters raised, seemingly only those they felt could be rejected, and confused the issue by merging their responses to two separate complainants).

Glad they made the right decision eventually in the case of Dr. Speight though.
 
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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.