Petition: Opposing MEGA

slysaint

slysaint

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Hutan said:
Prof Holgate leads the CMRC and so he should have read the PACE papers at least and some of Crawley's research papers too. And any moderately intelligent person should be able to spot the multiple errors, let alone someone who works in academia and has attained the status of professor
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(BTW Crawley is now a Prof too).

Taken from the emails reported by Tymes Trust (posted earlier)
"
* On 12th January 2013, Professor Stephen Holgate, Chair of what was at that point called the UK ME/CFS Research Collaborative (UK MCRC) sent an email to Collaborative group members stating: “As you will know, we have firmed up the date and place for the Inaugural
Launch of the UK ME/CFS Research Collaborative (UK MCRC). I attach a list of people that I intend to approach as researchers or those interested in supporting research in the field …”
(quote 1)

* Professor Holgate then emailed Professor Simon Wessely with importance marked as ‘High’ and copied only to Dr Esther Crawley of Bristol University and Joe McNamara of the MRC. It read “Dear Simon, If you feel there is anything you can do to help in identifying
researchers or in other ways, I would be very grateful. Thank you so much. Kind regards, Stephen.” (quote 2)

* Simon Wessely replied “First of all, it looks very good…… can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?....” Simon Wessely’s suggested researchers were redacted. (quote 3)

* Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen” (quote 4)

(NB At the end of January, Stephen Holgate sent an update on the issue of researchers to Collaborative group members (31st January 2013): “Please see attached list of research-interested people so far attending the launch… Could you see if there is anyone else we should include...?” (quote 5) The list of recipients
included Simon Wessely.)"

He knows.

 
slysaint

slysaint

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This is one of the comments on the OMEGA petition:

"I am signing this petition because I am a childhood sufferer of ME. I developed severe ME when I was eleven I am now thirty nine. I have endured over a quarter of a century with this dreadful disease that takes everything from you and leaves you with nothing worth living for. I have no past and no future and I have to fight every day to get something meaningful from life.

Along with all brutal realities of this disease I also had to endure Apartheid of medicine brought about by the BPS school. I had to learn the harsh realities of life with ME that care and compassion was not for the likes of me but for others who qualified through having conventional and approved conditions. That I would be shunned by doctors, shut out of the system, disbelieved, neglected, given wrong diagnosis’s, and left to suffer years in pain.

Of course I would like biomedical research into ME, for me it is the only hope of having a real life. But nothing would make me sign in support of the MEGA study. Why are the Wessely School and any colleagues of theirs involved in this study? They cannot be trusted, they show no compassion, they are ruthless in their pursuit of dominance in ME and they hold back research. I can only imagine they are involved because it is going to delay research in the UK for decades, eat up all the biomedical funding and further their careers at the expense of patients.

Sheena Hewitt, Perth, United Kingdom"

to me it says it all.
 
Marky90

Marky90

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CFS_for_19_years said:
If Holgate really wants to help patients, lets see if he has the balls to do the following:

1. Ask Crawley for her letter of resignation from the project. Or failing that, he could dismiss her.
2. State that White will have no part in this study.
3. Redefine the patient cohort so that it does not depend on NHS clinic patient lists, and take whatever steps necessary to include severely affected housebound/bedbound patients.
Click to expand...

Would you please explain why you won`t support such steps @charles shepherd? Cause if not, I am pretty bewildered.
 
Wildcat

Wildcat

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I do wonder exactly how Dr Stephen Holgate, the Chair of the CMRC Collaborative, is going to tell the Vice Chair of the CMRC (Dr Esther Crawley) that the patients (en masse) do not want her (or the charity AYME to which she is medical advisor) involved in the MEGA 'Omics' research?
.
Its clear that large numbers of patients do want the new Omics researchers to become involved in well designed ME research on patients who actually have well defined ME. What they do not want is a wide ranging study on fatigued patients, only some of whom may have ME.


Its looking as though its actually the CMRC itself that is the major obstacle to patient support for the MEGA study.
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Edit Addition -

From Clark Ellis's Blog Post:

"..Additionally, omics research takes time, a lot more time than it takes for mental health questionnaire and chalder fatigue scale results from the same study to be published and start being applied to all of us. If lots of people without ME/CFS but with mental health problems are entered into the study (highly likely based on the definition they tell us they will use) then a lot of those 12,000 study participants will demonstrate mental health dysfunction.

White and Crawley, and AYME and possibly others will want these questionnaires and it would probably seem quite reasonable to add this to the study (it’s not hugely expensive). But off the back of the biggest ever study of mental health in ME/CFS (even though that is not the primary aim of the study) White, Crawley and other researchers who promote behavioral views of the disease will be applying for funding for other studies, and they will get it because it will appear the data backs them up. More behavioral junk published every month and continuing crap guidelines from NICE that are based on it but fail to deliver real benefits to ME/CFS patients."...
https://autodidactauthor.wordpress.com/2016/10/24/why-i-am-signing-the-petition-to-oppose-mega/
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.

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Y

Ysabelle-S

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JoanDublin said:
Clark Ellis blogged on his support for OMEGA. Well worth a read.

https://autodidactauthor.wordpress.com/2016/10/24/why-i-am-signing-the-petition-to-oppose-mega/
Click to expand...

From his blog:

"It has also been pointed out that as well as mental health questionnaires for 12,000 patients we will also get some omics data...."

Then further down he writes:

"Additionally, omics research takes time, a lot more time than it takes for mental health questionnaire and chalder fatigue scale results from the same study to be published and start being applied to all of us. If lots of people without ME/CFS but with mental health problems are entered into the study (highly likely based on the definition they tell us they will use) then a lot of those 12,000 study participants will demonstrate mental health dysfunction.

White and Crawley, and AYME and possibly others will want these questionnaires and it would probably seem quite reasonable to add this to the study (it’s not hugely expensive). But off the back of the biggest ever study of mental health in ME/CFS (even though that is not the primary aim of the study) White, Crawley and other researchers who promote behavioral views of the disease will be applying for funding for other studies, and they will get it because it will appear the data backs them up. More behavioral junk published every month and continuing crap guidelines from NICE that are based on it but fail to deliver real benefits to ME/CFS patients.

Finally, the involvement of White and Crawley alongside these other highly respected scientists would serve to raise their own status and legitimize their reseearch despite their poor track record. That, combined with the questionnaire data they want to collect will mean we will never be rid of them."

There's a lot more on Clark Ellis's blog: https://autodidactauthor.wordpress.com/2016/10/24/why-i-am-signing-the-petition-to-oppose-mega/
 
Y

Ysabelle-S

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BurnA

BurnA

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Wildcat said:
Its looking as though its actually the CMRC itself that is a major obstacle to patient support for the MEGA study.
Click to expand...

The next logical question is : are the CMRC required ?

Why don't the MEA and other charities get together to run MEGA ?

Or form their own research collaborative that won't have unnecessary road blocks due the shoddy scientific practises of some of their key members ?

Given ECs position in CMRC, either she must go or the CMRC is basically useless and will never have patient support.
 
JoanDublin

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A

AndyPR

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From #MEAction UK Facebook page
MEAction UK said:
Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and 154 of you lent your voice to the concerns raised by many. Here are the results of the multiple choice vote:

"The study must include severely and moderately affected patients." 140 of 154 voted this. (90.9%)

"Those researchers/advisors who promote ME as a behavioral, psychosomatic illness must be removed." 132 of 154 voted this. (85.7%)

"The data from the study must be made publicly available (open access) provided it is anonymised." 131 of 154 voted this. (85.1%)

"The study must use a definition focused on post-exertional malaise (PEM) rather than generalised fatigue." 116 of 154 voted this. (75.3%)

"The study must commit to involve patients and independent patient groups in decision-making during the trial, and must make this process transparent." 107 of 154 voted this. (69.5%)

"Patient engagement must be maintained before, during and after the study via quarterly blog posts and periodic online Q&As with patients." 93 of 154 voted this. (60.4%)

"I am waiting to hear more about MEGA before making a decision (for example a full study design, clarity on the disease criteria, how patients will be represented)." 72 of 154 voted this. (46.8%)

"The study must include patients from Wales / Northern Ireland / Scotland." 62 of 154 voted this. (40.3%)

"Other." 42 of 154 voted this*. (27.3%)

"No changes need be made; I support MEGA in its current form." 2 of 154 voted this. (1.3%)

*Out of the 42 votes for "Other" 1 was pro MEGA, while the 41 remaining voiced concerns predominantly over the researchers involved, diagnostic criteria (generalised fatigue versus PEM-focused), the use of severe patients as well as whether this is an appropriate use of funding. All 42 comments have been passed on to the MEGA researchers for consideration and in the interest of patient involvement.

From these results, it is evident that the majority would like to see changes to the MEGA study before showing their support.

MEGA has been an area of great debate over the past few weeks within the community. Unrelentingly, we support the individual in the fight for health equality and patient empowerment, and will continue to provide that support regardless of stance of MEGA.

Therefore, below you will find the links both in support and in opposition to the study, and urge those who have not yet voted, to read both and consider the arguments carefully before making your decision.
Click to expand...
https://www.facebook.com/MEActNetUK/posts/1690444127940210
 
CFS_for_19_years

CFS_for_19_years

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It appears that the Executive Board of the CMRC came together to promote the type of research THEY want do, for whatever motivations they might have, including, but not limited to, keeping the lights on in their office. Their research goals may not necessarily align with those of patients.

If ME/CFS researchers form a club, and then propose research that involves a Vice Chair who patients don't want involved, that would be like breaking up the club. I assume EC joined the club so that she could further the type of research that she wants to do.

The CMRC appears to be a professional organization with the aim of perpetuating the goals and work of the people at the top, such as Crawley, not necessarily the goals of ME/CFS patients.

http://me-pedia.org/wiki/UK_CFS/ME_Research_Collaborative
The UK CFS/ME research Collaborative (CMRC) is a group of researchers and ME/CFS patient groups in the UK. It is led by Professor Stephen Holgate.[1] It was launched in 2013 and the launch was covered by the Science Media Centre.[2]
Its members include the ME Association, ME Research UK, Action for ME and the Association of Young People with ME
Aims
The collaborative was set up with the intention of:

  • providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
  • increasing awareness of M.E. within the research community,
  • highlighting priorities for research funding to assist funders such as the Medical Research Council
  • increasing funding for M.E. research.
Executive Board
Click to expand...
https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf
CMRC Charter
3.2.3 Members will be required to sign a declaration that they will not take part in the
harassment or abuse of researchers. Neither will they take part in orchestrated
campaigns against those conducting peer-reviewed research.
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So if Holgate or Charles Shepherd were to ask Crawley to not take part in the MEGA study, would that be considered "an orchestrated campaign against those conducting peer-reviewed research?"
 
C

Chrisb

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CFS_for_19_years said:
So if Holgate or Charles Shepherd were to ask Crawley to not take part in the MEGA study, would that be considered "an orchestrated campaign against those conducting peer-reviewed research?"
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Being of a somewhat pedantic nature it is not at all clear to me how one could campaign against those conducting peer reviewed research. Unless I misunderstand the process peer review does not take place until the research is completed and a paper submitted for publication.

So long as the research continues it is not yet peer reviewed. Once it has been published that research is no longer being conducted. No doubt other continuing research would be continued with the intention of peer review but that appears not to be covered.
 
Jan

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BurnA said:
The next logical question is : are the CMRC required ?

Why don't the MEA and other charities get together to run MEGA ?

Or form their own research collaborative that won't have unnecessary road blocks due the shoddy scientific practises of some of their key members ?

Given ECs position in CMRC, either she must go or the CMRC is basically useless and will never have patient support.
Click to expand...

If this cannot be done I think there needs to be a vote from patients, can they still proceed if there is a vote of no confidence in the CMRC? Maybe this should have been done instead of OMEGA, start at the top.
 
Jan

Jan

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CFS_for_19_years said:
It appears that the Executive Board of the CMRC came together to promote the type of research THEY want do, for whatever motivations they might have, including, but not limited to, keeping the lights on in their office. Their research goals may not necessarily align with those of patients.

If ME/CFS researchers form a club, and then propose research that involves a Vice Chair who patients don't want involved, that would be like breaking up the club. I assume EC joined the club so that she could further the type of research that she wants to do.

The CMRC appears to be a professional organization with the aim of perpetuating the goals and work of the people at the top, such as Crawley, not necessarily the goals of ME/CFS patients.

http://me-pedia.org/wiki/UK_CFS/ME_Research_Collaborative

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf
CMRC Charter


So if Holgate or Charles Shepherd were to ask Crawley to not take part in the MEGA study, would that be considered "an orchestrated campaign against those conducting peer-reviewed research?"
Click to expand...

Even if this were not the case I think she is greatly feared amongst her peers as she appears to have too much influence within the medical establishment. Look what happened to Nigel Speight, you speak against her and you risk your medical licence. So we probably have a situation where other doctors may not agree with her methods, but are any going to have the guts to speak up?
 
Daisymay

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charles shepherd said:
Jo

On the one hand, people are complaining that researchers are not interacting with and explaining their research proposals to the ME/CFS patient community

On the other hand they are complaining when a group who planning a very complex and costly research proposal provide preliminary information on various aspects of the study at a research conference, invite the public to express support for what is being proposed, and agree to provide regular email information to anyone who says that they are supporting the aims of the research

You just can't win!
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Oh come on Charles.....please don't throw the obvious failures of the MEGA proposals back at the ME community. People's concerns are totally legitimate and understandable. I find it very concerning that AfME and MEA fail to appreciate and agree with these concerns.
 
A

Aurator

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"3.2.3 Members will be required to sign a declaration that they will not take part in the
harassment or abuse of researchers. Neither will they take part in orchestrated
campaigns against those conducting peer-reviewed research."

It's hard to believe that this poisonous and menacing little sideswipe at patients and their supporters is still in there now that the PACE data tribunal have rubbished the idea that patients were organising and perpetrating campaigns of harassment.

I'm left wondering how any self-respecting biomedical researcher can sign up to that without first asking "Hang on a minute; what's clause 3.2.3 all about? I've never seen anything like it." At the very least it is potentially skewing all the researchers' perceptions of the nature of ME as an illness before they even start work on the study.

Ah, right. Got you. That was the idea.
 
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