Petition: Opposing MEGA

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Yogi

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Binkie4

Binkie4

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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??
 
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batteredoldbook

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Jo Best said:
https://twitter.com/i/web/status/858686912613240832
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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.
 
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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.

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

3,179 signatures
 
S

Sean

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7,378
Binkie4 said:
I very much hope they will join the other signatories just as they finally did with the letter about releasing the PACE data.
Click to expand...
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...
 
Esther12

Esther12

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13,774
Binkie4 said:
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??
Click to expand...

Still waiting...
 
Jo Best

Jo Best

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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/

Dr. Crawley also showed a slide of the patient petition campaign against the MEGA project. Perhaps she believes that the Wellcome reviewers were negatively influenced by this organized opposition when they rejected her preliminary application. That could easily be the case, although it is also possible, as I noted earlier, that the MEGA proposal was simply not up to Wellcome’s exacting standards.
From: http://www.virology.ws/2017/05/08/t...he-board-of-the-cfsme-research-collaborative/
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Binkie4

Binkie4

Senior Member
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644
@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.
 
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Jo Best

Jo Best

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Barry53 said:
Can we have this in its own thread please?
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AndyPR said:
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.
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slysaint said:
it's here:
http://forums.phoenixrising.me/inde...r-new-virology-blog-post-may-3rd.51174/page-3
and also on this thread http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
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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:
 
A

AndyPR

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Guiding the lifeboats to safer waters.
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/
It is hard to understand why Dr. Holgate and the CMRC board think the public or funders should support a research collaborative whose co-leader falsely accuses critics of libel and publicly advocates shielding trial data from scrutiny. I do hope Dr. Holgate and his colleagues find a way to improve on their current non-response going forward.
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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
 
A

AndyPR

Senior Member
Messages
2,516
Location
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.

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

3,226 signatures
 
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