Petition: Opposing MEGA

[Daisymay]

I take your point

But out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS) has undoubtedly spent a great deal of time and effort bringing together a group of top research scientists in various branches of -omics etc, organised meetings and a workshop etc,and formed a MEGA planning group - where they will discuss and develop a protocol, and will (in theory) then spend further time preparing a research grant application

If Stephen then goes back to these researchers and says -

Sorry, this has all been a complete waste of time over the past year

The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study

Charles, the issues being legitimately brought up by patients here are and were are totally predictable. Please don't blame patients for this.

 

[slysaint]

@CFS_for_19_years

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.

If these were really the original aims then they changed them before they began by
changing the name to CFS/ME (see emails from SW about CFS 'taking the lead') thus changing the whole agenda from being about M.E. to being about chronic fatigue.

But it started before 2013
http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

this was the MRCs plan before
http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfs-me-highlight-notice/
how/why did the 'expert group' let it all go so off-track?
I could weep

 

[Sasha]

"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

Pretty sure it was removed earlier this year, though I can't find a link.

 

[Wildcat]

.
.
The CMRC Charter. The Current Link via Action for ME website:
https://www.actionforme.org.uk/research/uk-cfsme-collaborative/


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

'Members Must: ...
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.'
.
.

 

[JoanDublin]

Pretty sure it was removed earlier this year, though I can't find a link.

It's still there. This is from the AfME website just now

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

 

[JoanDublin]

.
.
The CMRC Charter. The Current Link via Action for ME website:

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

'Members Must: ...
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.'
.
.

Snap!

 

[Countrygirl]

No link as yet but this is from Prof Hooper and Margaret WIlliams and dated 24th Oct.


There is an urgent need for high quality biomedical research into ME/CFS that is untainted by the influence of members of the biopsychosocial school who believe that the disease is perpetuated by dysfunctional beliefs and behaviour.

The proposed MEGA study (ME/CFS Epidemiology & Genomics Alliance) has the potential to provide a deeper understanding of the biology of ME/CFS by investigating the distinctive genetics, epigenetics, proteomics and metabolomics of people with ME/CFS, but the involvement of Professor Peter White, Chief Principal Investigator of the PACE trial, and Dr Esther Crawley is deeply troubling.

We believe their approach to research does not comply with essential tenets of the scientific process such as the primacy of objective over subjective measures, the requirement to adhere to pre-specified outcome measures and the need not to exaggerate results.

Before the re-analysis of the PACE raw data, Esther Crawley co-authored a paper which claimed up to 40% recovery in the PACE trial participants (BMC Health Services Research 2011, 11:217 doi:10.1186/1472-6963-11-217).

It is also of concern that Dr Crawley is involved in a paediatric study of the psycho-behavioural Lightning Process which is widely considered to be pseudoscience; furthermore, despite the obvious failure of the PACE trial, she has embarked on a study of graded exercise in children.

Hence their influence in the design and execution of MEGA could undermine the integrity of the whole study.

Pragmatic concerns relate to the size and feasibility of the endeavour which seeks to recruit 12,000 people with the disease. The PACE trial had to assess 3,158 individuals to find 641 who met the broadest definition of "chronic fatigue" (the Oxford criteria) and who were willing to participate in the study. If the same ratio applies in MEGA, then about 60,000 people will have to be assessed to find the 12,000 said to be necessary to tease apart the presumed subgroups that fall within such a broadly defined cohort.

Furthermore, such a large study group severely limits the range and quality of testing that can be applied to each individual due to budgetary constraints. Even with funding of £10 million, the most that could be spent on each participant would be around £800, and most likely far less due to administrative costs.

Would a better understanding of the disease not emerge from more in-depth investigations of a smaller but better characterised cohort?

Professor Holgate's stated belief that "CFS" could be as many as fifteen separate conditions may well be true, but this traps us in a circularity: if you believe that “CFS” is no more than broadly defined chronic fatigue and design your study on this basis, then of necessity you will capture people with many different underlying conditions (which would fulfil the psychiatrists’ current infatuation with MUPS or medically unexplained physical symptoms).

Hence we are concerned about the use of what Dr Crawley refers to as the “NHS criteria”, which can only be the criteria set out in the NICE Guideline CG53 with which she was closely involved and which are non-specific and have not been operationalised and moreover have been superseded by internationally accepted criteria.

A final issue is the central role of AfME as the supposed voice of patients, given their enthusiastic collaboration with the PACE trial and their failure to unequivocally condemn its many failings.

Professor Malcolm Hooper
Margaret Williams

24th October 2016

 

[trishrhymes]

Can Prof Hooper and Margaret Williams be asked to send this as a letter to all the members of the CMRC and MEGA? It would be useful to have it coming from a Professor rather than 'vexatious' patients!

 

[Sasha]

It's still there. This is from the AfME website just now

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

You're right!

Found my source, after a bit of googling:

Sonya Chowdhury of Action for ME noted that questions had been raised about a statement in the CMRC charter which states: “Members must… Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.” Ms Chowdhury said that the CMRC did not exist to “stifle scientific debate” and that a redraft would be made for clarification and circulated to board members for approval.

So it sounds as though a change is in the pipeline. Disappointing that that clause remains in the meantime.

I don't understand why the CMRC and/or MEGA don't have a website. You can set one up on Weebly in 10 minutes, for free, including a blog page, just using drag-and-drop. A kid could do it (in fact, kids do do it). They'd just need to pay a few quid for a domain name.

Might be worth suggesting, @charles shepherd.

 

[Ysabelle-S]

"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.

Do cancer patients and their supporters get clauses like that? I doubt it. I'm disgusted. ME sufferers have died, and that is what gets lost in this victim-playing. The real victims and their suffering are completely erased from the discussion.

 

[JaimeS]

The issue is, they don't think we're 'cancer'. They think we're 'schizophrenia'. And they feel perfectly justified in treating the mentally ill this way.

 

[Ysabelle-S]

The issue is, they don't think we're 'cancer'. They think we're 'schizophrenia'. And they feel perfectly justified in treating the mentally ill this way.

Yes, I think there are serious questions about the real behind-the-scenes prejudices towards people with mental health illness. Regardless of ME not being a psych issue. The medical and research professions need some education on those issues.

 

[Daisymay]

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

And indeed why aren't the 4 UK charities involved insisting on this? Please explain.

 

[Countrygirl]

A quote by Prof Stephen Holgate, chair of MEGA from an old copy of Perspectives (date unknown):

http://www.nature.com/articles/nrn3...o0fm3E3z6UjCo=&tracking_referrer=solvecfs.org

When asked the question:

How strong is the evidence that viral infections and/or immune dysregulation play a role in the aetiology of CFS?

Prof Stephen Holgate answered:

The current understanding of the syndrome of CFS/ME is that it has an external environmental or biological trigger, such as chemical exposure or a virus, but that psychological and social factors are important in perpetuating the illness.

Does he still adhere to this belief?

 

[charles shepherd]

I'm sorry that I have not been able to take part in the discussion on PR on the MEGA study today

Amongst other things I have been preparing for two important meetings in London tomorrow

First is a meeting of the Forward ME group of ME/CFS charities - where the main item on the agenda will be a presentation on DWP benefit medical assessments with representatives from CAPITA

We will also be discussing the MEGA study at this meeting

Forward ME Group Minutes: http://www.forward-me.org.uk/Minutes.htm

More info on the DWP benefit meeting at the House of Lords: http://www.meassociation.org.uk/201...-house-of-lords-next-tuesday-21-october-2016/

Second is a meeting with a film production company to discuss a new documentary film on ME/CFS

I will look at this discussion again on Wednesday

Dr Charles ShepherdHon Medical Adviser, MEA

 

[charles shepherd]

A quote by Prof Stephen Holgate, chair of MEGA from an old copy of Perspectives (date unknown):

http://www.nature.com/articles/nrn3087.epdf?referrer_access_token=FtyxhnojvctriyuAKuuoVNRgN0jAjWel9jnR3ZoTv0PCC0--nFSrLFO81i3ZUnjqhKK63miDucfglaZycG9a0HzhM915nD_xPNk9XNaiRU_skUulxrYWYPxJ3Huo9qWPnY_tCwdY2VKsSUhisQrOQ1qoNQDQ_WXKvFTJDLSdQ0Grg65p_CayB9Ot_tFfWxQFOieqrNl42Dc2uVwcwxmwCvgYsyLlFJo0fm3E3z6UjCo=&tracking_referrer=solvecfs.org

When asked the question:

How strong is the evidence that viral infections and/or immune dysregulation play a role in the aetiology of CFS?

Prof Stephen Holgate answered:

The current understanding of the syndrome of CFS/ME is that it has an external environmental or biological trigger, such as chemical exposure or a virus, but that psychological and social factors are important in perpetuating the illness.

Does he still adhere to this belief?

If you want to gain some insight into how Professor Stephen Holgate views ME/CFS I suggest you have a look at this video from his presentation to the Edinburgh MESH group:

 

[Cheshire]

A quote by Prof Stephen Holgate, chair of MEGA from an old copy of Perspectives (date unknown)

It dates back from september 2011: http://www.nature.com/nrn/journal/v12/n9/full/nrn3087.html

 

[charles shepherd]

You're right!

Found my source, after a bit of googling:



So it sounds as though a change is in the pipeline. Disappointing that that clause remains in the meantime.

I don't understand why the CMRC and/or MEGA don't have a website. You can set one up on Weebly in 10 minutes, for free, including a blog page, just using drag-and-drop. A kid could do it (in fact, kids do do it). They'd just need to pay a few quid for a domain name.

Might be worth suggesting, @charles shepherd.

I have never agreed with the use of the term harassment in this clause in the CMRC charter and it has been the subject of regular (and sometimes quite robust) discussion at CMRC Board meetings

As already noted above, the wording is now being changed

For the information of people who are new to the CMRC debate:

The CMRC is a very 'big tent' that includes clinicians and researchers who hold a wide spectrum of views on both cause and management of ME/CFS. So there is debate, discussion and disagreement at times.

As someone who believes it is far better to be inside groups and organisations that have real influence, especially when it comes to research, than criticising (or even shouting) from the outside, I am a member of the Board of the CMRC.

I know it's not a popular decision to take

But I do what I think is right - even if it is not popular

And I will continue to argue the case for biomedical research from inside the CMRC tent rather than outside the tent!

 

[JoanDublin]

Omega petition now at 1258

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

 

[BurnA]

I'm sorry that I have not been able to take part in the discussion on PR on the MEGA study today

Amongst other things I have been preparing for two important meetings in London tomorrow

First is a meeting of the Forward ME group of ME/CFS charities - where the main item on the agenda will be a presentation on DWP benefit medical assessments with representatives from CAPITA

We will also be discussing the MEGA study at this meeting

Forward ME Group Minutes: http://www.forward-me.org.uk/Minutes.htm

More info on the DWP benefit meeting at the House of Lords: http://www.meassociation.org.uk/201...-house-of-lords-next-tuesday-21-october-2016/

Second is a meeting with a film production company to discuss a new documentary film on ME/CFS

I will look at this discussion again on Wednesday

Dr Charles ShepherdHon Medical Adviser, MEA

Thanks for the update Charles, there is no need to apologise at all.
Hopefully the meetings go well tomorrow and you are ready to return to the discussion later in the week.