Petition: Opposing MEGA

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Barry53

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B

Barry53

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lilpink said:
Ditto. I have mailed him and copied in my own MP with whom I've already started a dialogue.
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Never thought to cc my MP. Though I initiated a dialogue with him a while back the response was absurdly "slopey shouldered" and even more absurdly out of date and uninformed. So I have now forwarded my email to him, which I sent and clearly addressed to Kelvin Hopkins yesterday.
 
Jo Best

Jo Best

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Petition Update - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18598481
Kelvin Hopkins, Member of Parliament for Luton North, has asked some written parliamentary questions about ME/CFS research and treatment recommendations. He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred; and if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted. The Department for Business, Energy and Industrial Strategy indicated on 25th November that it will not be possible to answer these questions within the usual time period and that answers are being prepared and will be provided as soon as they are available.

Two further questions by Kelvin Hopkins, which are currently awaiting answers, ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council's policies towards ME research over the last decade; and if he will seek those people's removal from positions of influence over future of ME research; and if he will review the policy of the Medical Research Council (MRC) in so far as it relates to addressing the dissatisfaction of ME patients with MRC's approach in this area.

You can find the parliamentary questions and answers here -
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons,lords&member=2&keywords=Chronic,Fatigue,Syndrome
You can also read his questions and the answers in full in this post by UK charity Invest in ME Research -http://www.facebook.com/groups/5804522506/permalink/10154153112497507/

Though not directly connected (we have not been in contact with Kelvin Hopkins) these parliamentary questions are relevant to our petition, as MEGA is a project of the CFS/ME Research Collaborative (CMRC) which followed from the last CFS/ME 'Expert Group' of the Medical Research Council. The MRC co-funded the PACE trial (designed to provide evidence that psycho-behavioural and graded exercise therapies are effective and cost effective treatment for ME/CFS) along with the Department for Work and Pensions and other co-funders.

It's refreshing to read that Kelvin Hopkins has asked such pertinent parliamentary questions, as the answers that various people are receiving in writing from the CMRC Board about MEGA sound as though they are coming from politicians rather than scientists or medical doctors and only serve to make us ever more certain that we are right to have no confidence in MEGA.

You can cast your vote against giving more millions of pounds of 'mainstream funds' to anyone connected highly suspect research activities by signing our petition Opposing MEGA - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
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user9876

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Binkie4 said:
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons,lords&member=2&keywords=Chronic,Fatigue,Syndrome

Some hugely disappointing answers to Parliamentary questions. Referred back to QMUL.
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Basically the government is saying that if an institution is responsible for research misconduct it judges itself and the government won't get involved. It is also saying that the MRC has no responsibility for managing the money it hands out.
 
Countrygirl

Countrygirl

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http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitness-nhs/

Trial By Error, Continued: A Follow-Up Post on FITNESS-NHS
28 NOVEMBER 2016
By David Tuller, DrPH

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

Last week’s post on FITNET-NHS and Esther Crawley stirred up a lot of interest. I guess people get upset when researchers cite shoddy “evidence” from poorly designed trials to justify foisting psychological treatments on kids with a physiological disease. I wanted to post some additional bits and pieces related to the issue.

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I sent Dr. Crawley a link to last week’s post, offering her an opportunity to send her response to Dr. Racaniello for posting on Virology Blog, along with my response to her response. So far, Dr. Racaniello and I haven’t heard back—I doubt we will. Maybe she feels more comfortable misrepresenting facts in trial protocols and radio interviews than in addressing the legitimate concerns raised by patients and confronting the methodological flaws in her research. I hope Dr. Crawley knows she will always have a place on Virology Blog to present her perspective, should she choose to exercise that option. (Esther, are you reading this?)

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From reading the research of the CBT/GET/PACE crowd, I get the impression they are all in the habit of peer-reviewing and supporting each others’ work. I make that assumption because it is hard to imagine that independent scientists not affiliated with this group would overlook all the obvious problems that mar their studies—like outcome measures that represent worse health than entry criteria, as in the PACE trial itself. So it’s not surprising to learn that one of the three principal PACE investigators, psychiatrist Michael Sharpe, was on the committee that reviewed—and approved—Dr. Crawley’s one-million-pound FITNET-NHS study.

FITNET-NHS is being funded by the U.K.’s National Institute for Health Research. I have no idea what role, if any, Dr. Sharpe played in pushing through Dr. Crawley’s grant, but it likely didn’t hurt that the FITNET-NHS protocol cited PACE favorably while failing to point out that it has been rejected as fatally flawed by dozens of distinguished scientists and clinicians. Of course, the protocol also failed to point out that the reanalyses of the trial data have shown that the findings published by the PACE authors were much better than the results using the methods they promised in their protocol. (More on the reanalyses below.) And as I noted in my previous post, the FITNET-NHS protocol also misstated the NICE guidelines for chronic fatigue syndrome, making post-exertional malaise an optional symptom rather than a required component—thus conflating chronic fatigue and chronic fatigue syndrome, just as the PACE authors did by using the overly broad Oxford criteria.
 
Countrygirl

Countrygirl

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https://spoonseeker.com/2016/11/28/fitnet-fiction/

FITNET Fiction
Posted on November 28, 2016 by mrspoonseeker
Here’s my latest response in the ongoing dialogue with Professor Holgate, CMRC Chair, about the proposed MEGA study:

Dear Professor Holgate

Thank you for your response to our email. I have not been able to consult with all the 218 people who signed the original communication but those whom I have been in touch with have expressed considerable disappointment that you did not attempt to address the specific issues we raised in our letter.

However, I await the new website with interest and hope that the FAQ section will at least deal with the two main issues we mentioned in relation to MEGA:
  • the recruitment of a representative sample of patients (including the severely affected) who have the cardinal ME symptom of post-exertional malaise, and
  • the suitability of Professor Crawley to take charge of such recruitment given the highly imprecise nature of her previous work in this field
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Barry53

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Binkie4 said:
Some hugely disappointing answers to Parliamentary questions. Referred back to QMUL.
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When a miracle does not happen it is not really that disappointing, just confirmation. As I said elsewhere, the questions and the answers are now recorded publicly into a formal audit trail. When the muck hits the fan, as it surely will in due course, it will all be there for everyone to refer back to. Much less wriggle room :).
 
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Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Kati said:
This tweet from James Coyne:

https://twitter.com/i/web/status/803325345776730114
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Given what Coyne did to me, to Angela Kennedy, to Jeannette Burmeister, to Sally Burch, to Wildcat, to Jay Spero, to James David Chapman and to others;

given Coyne's defense of Walitt and Walitt's involvement in the NIH study;

given Coyne's promotion of Shorter as "expert" and his promotion of Shorter's blog and Shorter's books, including From Paralysis to Fatigue;

given Coyne's seeking to scapegoat "deviant patients" for his decision to promote and defend Shorter - that Tweet has to qualify for Chutzpah of the Year Award.
 
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