Petition: Opposing MEGA

[thegodofpleasure]

Prof Stephen Holgate's links to the MRC have always concerned me and it now seems that he is not the "honest broker" that he purports to be.
He evidently has no interest in the viewpoint of a very well-informed patient community, who ought to have been integral in the design of the MEGA project. In my opinion, his disdain for patients concerns is almost palpable.
This latest Email controversy confirms (in my mind at least) that his involvement in anything to do with ME/cfs should be regarded with considerable suspicion.

 

[Molly98]

There already was a biomedical 'research collaborative' in the form of Invest in ME Research and the biomedical researchers with whom they work in UK and abroad. If CMRC members had genuinely wanted to develop biomedical research in UK they would have supported the IiMER initiative, not attempted to compete or sabotage.[/QUOTE
I agree. Why is/was the CMCR ever necessary?

It would seem to me, that while there are a few people involved in CMCR who are of the character to listen and take on board patients experiences and views and try and work cooperatively, there are those whose character it is to not listen and to use the organisation as a vehicle to push forward one's own beliefs and agenda.

It is not rocket science to work out whose will and agenda will prevail and who will come out on top.

Unfortunately, this dynamic will continue to play out over and over for year upon year with the same people involved until one side says enough, draws a line in the sand and is not prepared to engage in this game anymore.

How able is Crawley to listen and reflect upon the views and experiences of others? - over the years it appears she is utterly incapable of doing so, blindly forcing ahead her own agenda no matter what harm it causes.

How able is Holgate to listen? how able is he to not be seduced by Crawley's beliefs if that is what he is exposed to regularly? recent events would suggest that he is susceptible and easily influenced by Crawley.

These ARE the characters involved in MEGA, they are the ones holding the power in the CMCR, they are not going to have sudden personality transplants and things are not going to change no matter how much we might wish it to change and be different. no matter how unfair, unjust, infuriating and harmful it may be.

Better to put our energy into supporting IiME, Tymes trust etc and proper bioresearch into ME elsewhere than trying to change what is and always will be in CMCR and MEGA.

 

[Valentijn]

 

[AndyPR]

Hahaha, "for reasons that baffle us". God forbid Holgate should actually engage with the plebs that he wanted the support from to find out why this should be the case. I can't wait to see what they propose as the patient representatives for MEGA, maybe someone they know who has previously felt more than a bit tired? That should do, fits the demographic of the people they want to study....

 

[snowathlete]

for reasons that baffle us

How can Holgate, MEGA, and the CMRC, be baffled by the campaign to oppose MEGA? There is nothing baffling about it; the reasons have been clearly articulated here, on blogs, in the petition, in two large online polls, and elsewhere.

My concerns are growing over the conflicts of interest in this project. We not only have patient organizations involved in the project when their advisers are the ones who would be involved in the actual research, but it's now clear there are conflicts with funders being too closely involved at such an early stage and in issues they should be separate from. The fact the MRC people were copied into this email exchange with JE, an adviser of an uninvovled patient organization that has raised concerns about the study is deeply concerning. It stinks of the sort of thing that patients have raised concerns about in the past.

Is it really so hard to understand that patients suffering with a disease expect the research into their disease to be decided impartially and on it's merits and shortfalls, and that patient's should have a genuine say in it? Patients deserve better than politics and a system of "it's who you know, not what you know"

 

[trishrhymes]

Thank you @Jonathan Edwards. Plain speaking and total respect for patients and science. So refreshing.

It will be fascinating to see what happens.

 

[Molly98]

"For reasons that Baffle us, there is an internet campaign to try and stop us from doing this".

So manipulative, decietful and passive aggresive.

Any one Baffled by this is clearly lacking the intellect, reasoning, problems solving and research skills to undertake research of any kind, a 3-year-old child could figure this out.

Anyone baffled by this has absolutely no place and no skills for engaging with patients and their carers as they obviously are lacking the ability to understand clear and effective communication and have zero emotional literacy.

You are telling me they have seen the OMEGA petition but not read the comments? the 100's of comments spell it out clearly.

These people have no place in research if they choose to be blinded and baffled and subsequently ignore anything and everything which does not fit with their belief system.

Thank you @johnathanedwards for your clear and honest communication, and for your ability to call a spade and spade and not to pussyfoot around the central problem of Esther Crawley's involvement and the flaws of the BPS approach to both research and treatment.

Seriously, if Holgate or Crawley are reading this.... please cut the bull, it became tedious a long time ago.

 

[AndyPR]

2736 supporters now

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

 

[Molly98]

In fact that "we are baffled" by bit is just another way a person in power chooses to deny, belittle and invalidate the experiences and views of others in order to further disempower them in an attempt to make them look, crazy stupid and nonsensical, clearly incapable of engaging in the " important stuff " . Classic gaslighting.

Peed me right off he has, so condescending!

 

[A.B.]

Great letter @Jonathan Edwards.

To put things in a nutshell, the way to ‘End the damaging battle over chronic fatigue syndrome’ to quote Esther’s New Scientist article, is for Esther, and the CMRC as a whole, to put out a clear statement that the shortcomings of past (and perhaps ongoing) studies of psychological and exercise therapies are understood and taken on board in future plans.

I doubt the CBT/GET lobby is willing to admit defeat yet! PACE is a symptom of widespread poor methodology in this branch of clinical psychology and psychiatry. There will be a domino effect and careers are at risk. They won't admit that any problems exist for as long as they are able to.

Maybe the other members of the CMRC are willing to admit that problems exist.

 

[trishrhymes]

My understanding is that the MEGA grouping was formed in order to facilitate an application for funding by certain investigators, not so far clearly identified, for a large-scale genetic/metabolic project.

I think @Jonathan Edwards has put his finger on a key point here.

Who were the 'not so far clearly identified' people who initiated the formation of the CMRC and MEGA and who intend to actually run the project?

I have been puzzled about why Stephen Holgate, an asthma researcher and member of the MRC became involved in the first place. Was he approached by the likes of Wessely, Crawley and White as a useful insider from the MRC who could be influenced/manipulated to front their version of a biomedical study that would suck up ME research funding for years to come, and which they could influence by making it a fatigue study with unrepresentative cohort etc etc.

The fact that we have seen e-mails from Holgate to Wessely asking for advice on who to approach to join the project suggests Wessley had his sticky fingers in it right from the start. I wouldn't be surprised if he initiated it. He likes to manipulate from behind the scenes without his name appearing on the front page - look at PACE etc.

Or is this a conspiracy theory too far.

 

[charles shepherd]

Dear Charles, (@charles shepherd )

I do appreciate your attempt to promote useful dialogue here.

I am not sure that I would agree, however, that the correspondence from Stephen Holgate to myself could reasonably be regarded as 'personal communication'. As Richard Simpson has pointed out, if it was indeed intended to a confidential enquiry between one scientist and another about the motivation for the content of a charity website, directed at an advisor to that charity, I am not sure that there is a legitimate reason for such an enquiry being confidential. It is a matter of wider concern. Moreover, although Dr Holgate did thank me for my reply he provided no response to the issues that I raised. There appeared to be nothing personal about the exchange which was entitled 'Scientific Advisory Board of Invest in ME'.

Concern that I expressed in my comments to Dr Holgate is increased by your note that a recent CMRC meeting discussing MEGA was held at the MRC. If MEGA is a project set up by investigators intending to put in a competitive application for funding then it seems to me a breach of protocol for those investigators to make use of MRC facilities. If MEGA is, on the other hand, a project being commissioned by the MRC or other funding bodies then my understanding is that it is a requirement that such commissioning should be put out to competitive tender, and independently peer reviewed. IiME were not so long ago denied the opportunity to obtain matched funding for a project on the grounds that they did not have a fully transparent competitive tendering system for projects. (As far as I know this has been addressed by IiME since.) I assume that such requirements apply to the MRC or Wellcome.

I am increasingly concerned that MEGA breaches the basic regulations for grant funding in exactly the way that the patient community is concerned about. There may even be legal implications to this. I mentioned to Stephen Holgate that I worried about blurring of distinctions between applicants and funders. I had no response. I am now more concerned.

The enquiry made to me (and I suspect it was only me) by Dr Holgate said nothing about confidentiality and considering the interests of patients expressed here I feel that I am not in a position to keep something confidential when it is has no business to be. I will explore my email records but expect to post the relevant material here in due course.

Hi Jonathan

Fair enough - but I didn't think it was appropriate for me to publish the correspondence between yourself and Stephen

C

 

[Daisymay]

The minutes for this CMRC meeting, which will contain more information on the timetable for the MEGA bid and development of the study protocol - including patient selection etc, and the formation the MEGA advisory group, will appear in due course

Dr Charles Shepherd

I guess we can assume that these minutes will be a doctored version of the minutes for patients, as has been the case with CMRC minutes previously, from their own admission?

And even if they tell us they are the full unaltered minutes do they expect us to believe that?

My impression is that trust in the CMRV is at an exceptionally low ebb and short of a full public rejection of the BPS view and acknowledgement that ME is a serious multi-system disease by the CMRV/MRC (see IOM report, based on the extant scientific evidence which completely invalidates the BPS point of view - a point of view being a belief strongly held with no evidence to support it) then I can't see the patient community getting behind MEGA or anything else, and rightly so.

 

[Cinders66]

I think S Holgate himself has done some CFS research in the early 2000s

Holgate and Kerr et al (2005) have recently found that patients with ME/CFS have reproducible alterations in gene regulation and that sixteen genes have an expression profile associated with the disorder that can be grouped according to immune, neuronal, mitochondrial and other functions." This effect is known to be linked to organophosphate exposure. In other words, as Williams (2005) states : " there are more gene abnormalities present (in CFS/ME) than are found in cancer sufferers."

http://www.25megroup.org/Information/Group Publications/SA & GET.doc

 

[charles shepherd]

I think @Jonathan Edwards has put his finger on a key point here.

Who were the 'not so far clearly identified' people who initiated the formation of the CMRC and MEGA and who intend to actually run the project?

I have been puzzled about why Stephen Holgate, an asthma researcher and member of the MRC became involved in the first place. Was he approached by the likes of Wessely, Crawley and White as a useful insider from the MRC who could be influenced/manipulated to front their version of a biomedical study that would suck up ME research funding for years to come, and which they could influence by making it a fatigue study with unrepresentative cohort etc etc.

The fact that we have seen e-mails from Holgate to Wessely asking for advice on who to approach to join the project suggests Wessley had his sticky fingers in it right from the start. I wouldn't be surprised if he initiated it. He likes to manipulate from behind the scenes without his name appearing on the front page - look at PACE etc.

Or is this a conspiracy theory too far.

The CMRC was largely put together by Professor Stephen Holgate after the MRC decided that it was no longer appropriate to continue with the MRC Expert Group on ME/CFS Research

As we have discussed many times before, the intention was to bring together a collection of researchers (current and new - with a wide spectrum of views on causation and management), research funders, the pharmaceutical industry etc

And as I have also stated many times before, on a personal basis this would involve regularly sitting down and discussing research strategy with people I may not agree with (which I am always willing to do) and that it was far better to be putting the patient case for biomedical research from 'inside the CMRC tent' rather than complaining from 'outside the CMRC tent'

You will find quite a lot of information on the MRC Expert Group on ME/CFS Research on the MRC website:

http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

 

[Cinders66]

The CMRC was largely put together by Professor Stephen Holgate after the MRC decided that it was no longer appropriate to continue with the MRC Expert Group on ME/CFS Research

As we have discussed many times before, the intention was to bring together a collection of researchers (current and new - with a wide spectrum of views on causation and management), research funders, the pharmaceutical industry etc

And as I have also stated many times before, on a personal basis this would involve regularly sitting down and discussing research strategy with people I may not agree with (which I am always willing to do) and that it was far better to be putting the patient case for biomedical research from 'inside the CMRC tent' rather than complaining from 'outside the CMRC tent'

You will find quite a lot of information on the MRC Expert Group on ME/CFS Research on the MRC website:

The tent can also be a net
Solve ME/CFS in USA are able to influence NIH without sitting in a loose alliance with the NIH and people they might not view as helpful. The question for me is has the 9 years Of being inside the tent yielded enough for it to be considered the most effective option. Being outside doesn't have to mean ineffectual grumbling it can mean forming alternative alliances and lobbying for more funding in the form of RFAs and a more comprehensive wide reaching strategy in U.K., especially to bring about urgently needed severe ME care/research.

 

[Jo Best]

Hi Jonathan

Fair enough - but I didn't think it was appropriate for me to publish the correspondence between yourself and Stephen

C

In the spirit of transparency would you @charles shepherd please now publish your originating email to Stephen Holgate. Thank you in anticipation of your cooperation in this matter.

 

[Jonathan Edwards]

Hi Jonathan

Fair enough - but I didn't think it was appropriate for me to publish the correspondence between yourself and Stephen

C

I agree Charles, I appreciate your tact. It was my call.

 

[lilpink]

It would be interesting to see the full thread of this conversation if only to assess who brought up the knotty question of Invest in ME influence over OMEGA signatures. As the correspondence seems to have originated from Charles Shepherd do we presume it was he who brought this nuance to the table? And if so, in what way would Invest in ME influence ( had it been the actual cause of the inflated figure at the OMEGA petition..it was not) be any different to the influence the MEA or AfME had over those signing the original MEGA petition?

 

[Jonathan Edwards]

It looks to me increasingly that the CMRC and MEGA are both essentially grant commissioning bodies. Yet patients have been given to believe that members of the MEGA team are likely to be the grant applicants when the project gets written. That is suggested by comments that detailed protocols have not yet been written. Protocols are written by applicants, not commissioning bodies. My understanding is that a grant commissioning body is not entitled to award itself grants but that any work commissioned goes out for competitive tender. I think the CMRC needs to make its position clear on this.

What appears clearer and clearer is that the MEGA project does not yet exist in a form that might be ready to ask the patient community for their approval on. The patient community is obviously keen to support good studies of genetics and metabolism but everyone has always known that. Was the patient community simply being asked to agree with a group of commissioners that this sort of research was worth commissioning? It seems not. I am not comfortable about the situation.