Counter petition to the MEGA petition, brainstorming stage

AndyPR

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OK, so if we were to start a petition of our own, and I've seen support elsewhere for one, we obviously need something agreeable to as many people as possible. However, I also think time is of the essence, so I think, somewhat arbitrarily, I'll set a limit of 23:59 Sunday October 2nd as time for discussion, after which I'll look to use all suggestions to come up with a final version. Use the like button on posts that you agree with, they will get more 'weight' in the final consideration.

If we use Change.org as our petition platform, the process runs like this.
1. Petition title. What should this be? This is where we define our goal.
2. Choose a decision maker. This is the person, organisation, or group that can make a decision about your petition. Can we identify who this should be? Will be linked to the title in most cases.
3. Talk to your decision maker. Well, we'll cross this bridge once we've identified them and progressed to this stage.

I'll need help from you guys if this does go forward, I can manage one foot in front of the other type work fairly well but creative and ordered thinking tends to fry my brain quicker than anything, and we'll need a solid argument in writing to back up this petition and, hopefully, make it a success.

ETA: Will be travelling most of Friday, won't be able to get back on PR until the evening, just a FYI.
 

Esther12

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Really important to be careful with this, as a petition like this is unusual and could easily be used against us.

How about this for a title:

Petition against further funding going to the work of White, Crawley and Collin
(Could remove Collin? He does seem pretty terrible, but also young, so mentioning him might seem particularly mean)

The MEGA petition is aimed at 'mainstream research funders' - we could do the same? No idea really.

Possible intro (too strong? I think it can be backed up, but it could seem unreasonable. But then... it needs to be quite strong to make clear why we think a petition is worthwhile):

Already, too much money has been given to researchers who have made life worse for those with ME or CFS. Research funders need to recognise that poorly conducted or misleadingly presented research does real harm to peoples lives, and that we want it to stop. We want to stop money going to those who have shown that they cannot be trusted.
Then it would be worth including some carefully phrased well supported examples of their spin. Given the debunking of PACE recovery claims, focusing on that could be a good idea. Maybe mention SMILE for Crawley and Collin too (that could complicate things)?

Do we think that now is the time to be doing something like this? Maybe wait a few more days to see if further details come out from the CMRC? Or wait even longer? I don't know.
 
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Snowdrop

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People with ME are deeply offended by the inclusion of PACE trial supporters. Please remove them from the MEGA research. We deserve better than this.

It's long but also much more brief than what I have to say on the subject (and more polite).
EC is not a psychiatrist I think.
 

Jan

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People with ME are deeply offended by the inclusion of PACE trial supporters. Please remove them from the MEGA research. We deserve better than this.

It's long but also much more brief than what I have to say on the subject (and more polite).
EC is not a psychiatrist I think.
I like this :) It makes the point that it is PACE trial supporters we have issues with.

I was rather shocked today to find out that Esther Crawley is in fact a paediatrician, which makes the work (experiments) she does with CBT and GET on children even more shocking :jaw-drop:
 
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Kyla

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I'm going to put my 2 cents here, but I am not in the UK, so you can feel free to tell me to butt out if you want only UK patients' input. :)

For what its worth I think it might be better strategically to frame this towards patient demands for research and then tackle the MEGA study more subtly.

ie - make the petition a sort of pledge
eg - "we the undersigned patients, supporters, and researchers pledge to only support, fund or participate in research that meets the following conditions"

then frame the issues around recent PACE developments and the need for:

1) proper diagnostic criteria (cite NIH, P2p and AHRQ addendum on why the Oxford criteria / broad criteria are causing harm) and well defined cohorts

2) proper outcome measures and meaningful definitions of recovery etc (can work in a bunch of PACE stuff), proper collection of harms data

3) Patient input + collaboration into study design, methodology etc.

4) and then... here's where it gets tricky...Something to indicate no involvement from fraudulent BPS nutters. But not sure exactly how to frame this in a "non-vexatious" manner, without looking like we are attacking people instead of bad methodology
possibly something demanding awknowledgment of problems with PACE and steps to avoid repeating it? Or that patient's will not support any research by PACE researchers until a full independent review has been conducted?
I dunno. Of course my brain just shut off for the important bit.

ETA I forgot...

5) All data to be shared openly in a timely fashion, consent forms to include data sharing provisions

6) terminology to be used in a way that properly reflects criteria used to select patients. ie ME for ICC, ME or ME/cfs for CCC, CFS for Fukuda, and idiopathic fatigue for Oxford or for no Criteria (Crawley studies)
 
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I don't have much time at the moment, but wanted to give my 2 cents as well.

I think this petition should focus on the advisory board and not on the research. The message should be that ME patients want to be represented by people who work in their best interest and that this is not the case with some of the people currently on the advisory board.

From what we've seen so far, the research itself sounds great, and this should probably also be communicated. We do not want this to look like unreasonable ME patients criticising well-meaning researchers. Nobody should be able to even try and spin it like that. So I don't think that demands regarding criteria, open data, etc. should be part of this petition.

I don't know if this would be possible, but perhaps suggestions could be made as to who we think would be suitable organisations/individuals/experts to be on the board. Obviously, whoever is suggested would have to be asked first if they would be prepared to take on the job.
 

Esther12

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People with ME are deeply offended by the inclusion of PACE trial supporters. Please remove them from the MEGA research. We deserve better than this.
One possible problem with that is that talk of being 'offended' is now often viewed dismissively as an emotionally driven attempt to control others. Would 'concerned' do the same job, but avoid that trouble?
 

thegodofpleasure

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This discussion is already drifting away from the original point - that being to counter the "honeytrap" petition on Change.org that has been set up by the MEGA camp as a means to bolster their application to the MRC for funding.

Any counter-petition needs to draw attention to the potential duplicity inherent in the MEGA project research team.

I would wish to draw attention to the difference between the list of researchers cited on their change.org petition and the sanitised list that MERUK have posted on their MEGA promotion webpage - promoted via Facebook - where non of the controversial researchers' names are mentioned http://www.meresearch.org.uk/news/mega-study-pledge-your-support/

I would also draw everyone's attention to the excellent statement on this topic, which Invest in ME Research have put out in response to questions they've received about MEGA from concerned parties:
MEGA study - #ProjectSinkhole ?

We have been asked our opinion on the so-called MEGA study which patients are being asked to support by signing a petition.

From the little information we can ascertain -

We believe this will, if it gets accepted, suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME.
Yet we do not have confidence that this will lead to any effective remedy for people with ME.

A lot of data is proposed to be collected on a broadly defined patient cohort.

What is this data being used for?

It is stated –
“If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.”

We wonder what treatments they are thinking of developing whilst including those investigators who believe that ME is a faulty illness belief amenable to changing one’s thoughts.

We feel the petition has no other meaning but showing an element of patient public involvement.
And we also wonder if this proposal has already been accepted by some in positions of influence and that this petition may be mere cosmetics rather than substance.

There is no description of how “ME/CFS” patients are diagnosed before entry. Are there enough trained doctors to diagnose 12000 ME patients in a consistent way or can anybody with unexplained fatigue put themselves forward?

This resembles the shambles of the PACE Trial again and patients are already falling for it.

The history of MRC policy toward ME does not engender trust – numerous “expert” panels that produced nothing, PACE Trial funding, funding of research into other illnesses such as Sjogrens under the banner of ME research – yet we are still no wiser, patients are still ill.

We have already requested that the MRC refuse to allow grant applications from, or provide funding to those investigators who were involved in the flawed PACE Trial. This project proposes some of those behind PACE or supporting it will be involved. We have no confidence in these people.

Like a sinkhole we feel this will suck away available funding for ME - and also remove many years of additional opportunity for good research.

We feel this is yet another way that patients will be given a line that something is happening – yet based on the experiences of the past it will be just more years waiting – and then little to show for it other than to benefit some whom we feel should not be involved in research into ME and some organisations.

Having scarce funding sucked away like this is one thing – losing more lives to it through delays is another and we cannot accept that.

This research will take years and require so much further analysis that it is difficult to see how it benefits patients any time soon.

We cannot support this.
As far as wording any counter-petition is concerned, I think that it should be in the form of a bullet-pointed list of objections and concerns, beginning with a demand that no researchers who have been involved with the discredited PACE trial should be involved in any future MRC funded research of this disease.
 

trishrhymes

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Perhaps, rather than naming individuals to be excluded from the research in any capacity, as advisors , observers, or directly, we should specify all researchers who have supported the biopsychosocial model of ME.

This could explicitly includ e the researchers on the PACE and MAGENTA trials and anyone who has publicly supported these. This would cover White, Wessley, Crawley, Sharpe, Chalder and others without naming them.
 

A.B.

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Patients are asked to support a study about which they know next to nothing. This is already patient involvement, and bad one. Good patient involvement would involve first talking with patients to design a study, then seeking approval from funding bodies and patient organizations. We don't have enough information to determine whether this is a sensible study or a total failure. Recruiting 12000 patients that fit certain criteria but are still as much as possible drawn from a random sample is a large problem and we don't know how they plan to solve this.

The bizarre psychosocial model (BPS) has no place in research, especially not when PACE has just been shown to be bad science. There is sufficient evidence to conclude that ME/CFS is not somatisation as believed by BPS proponents but a complex systemic disease (see IOM report).
 
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thegodofpleasure

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Suggested wording:

To the United Kingdom Medical Research Council:

We, the undersigned, hereby register the following concerns about the proposed M.E./CFS Epidemiology and Genomics Alliance (MEGA) research study, which is being promoted by the charities Action for M.E. and M.E Research UK

1. That the full trial protocol should be published and a formal consultation subsequently undertaken, with patients,
advocates and other interested parties, before any application for funding is made to the Medical Research
Council.

2. That any researcher who has previously been involved in the now discredited PACE trial (or who has supported
the bio-psychosocial model of M.E /cfs) should not be involved in the study.

3. That the illness definition which is used to recruit patients onto the trial shall be the Canadian Consensus criteria
(or a derivative thereof), which includes Post-exertional malaise (worsening of symptoms) as a mandatory
requirement for inclusion.

4. That the researchers involved in the study shall fully commit to the principles of data sharing with regards to any published work and complete transparency with regards to the conduct of the trial.

5. That the trial will be conducted in accordance with the published trial protocol, with no post-hoc changes or subsequent deviations.
 

user9876

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Suggested wording:

To the United Kingdom Medical Research Council:

We, the undersigned, hereby register the following concerns about the proposed M.E./CFS Epidemiology and Genomics Alliance (MEGA) research study, which is being promoted by the charities Action for M.E. and M.E Research UK

1. That the full trial protocol should be published and a formal consultation subsequently undertaken, with patients,
advocates and other interested parties, before any application for funding is made to the Medical Research
Council.
It is a lot of work to develop a full trial protocol and so I'm not sure that it is practical for people to self fund its development. Why not ask for a public open review stage when the protocol is published.

3. That the illness definition which is used to recruit patients onto the trial shall be the Canadian Consensus criteria
(or a derivative thereof), which includes Post-exertional malaise (worsening of symptoms) as a mandatory
requirement for inclusion.
I do think a wide protocol is needed. So I think we should try to ensure their are sufficiently powered subsets meeting different criteria such as CCC and that they are meeting CCC and not Oxford intersected with CCC. To include the wider criteria may help shed light on if there are differences between different criteria or whether the criteria reflect severity.


4. That the researchers involved in the study shall fully commit to the principles of data sharing with regards to any published work and complete transparency with regards to the conduct of the trial.
I don't care whether the researchers commit to the principles of data sharing. What matters is outcome i.e. that the data is shared so that patients and other academics can look at it and get confidence in the results. I would insist on data sharing based on a prepublished data sharing plan which makes clear what is considered anonymous data and what is considered PII.
 

Sasha

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Remember Nath's response when he got bombarded with patients wanting particular people removed from the NIH intramural study? He said that other researchers were being driven away from becoming involved, people on the project were scared of being named - and he defended Wallit's continued inclusion. Wallit is still in position and the communication that we'd been promised with the NIH team doesn't seem to have come to much since (unless I missed it happening).

In other words, pressure caused us to lose potentially good researchers, the NIH to circle the wagons, and PWME did not the change in personnel that people wanted.

The situation with MEGA is quite a close parallel in many ways.

I'm not convinced about a petition, especially one cobbled together very quickly. I think it could backfire, especially when there's been no prior dialogue between patients and MEGA.

I think the rush to produce something in the next few days is going to produce something ill conceived.

I'd rather see an open letter from patients that asks key questions, rather than makes demands.

This has been reported on a MEGA workshop earlier this year:

#MEAction news piece said:
The report of the workshop outlines a communications strategy with patients, and states: “The group discussed how engagement of people with ME/CFS and participation during development of the study will be essential. This will include establishing advisory groups, for adults as well as for children and young people with [ME/CFS]. The group also considered the importance of maintaining good two-way communication with the wider community and providing updates on the progress being made.”
The report linked to a (typically) now-dead link on AfME, who (badly) host (piss-poor) scant comms from MEGA.

MEGA may be getting their comms filtered by AfME, who are not the people for the job, IMO.

We need a more direct way of communicating and making demands via a petition is not always the best way to do that.

MEGA could be fantastic. It could be one of the best things that has ever happened to us. George Davey Smith is not some BPS clown, and he's in charge. He's pulled some impressive people in. It's metabolomics and all sorts of great stuff - and if it's open data, there'll be no hiding the results.

[Side point: with open data, there'll be no protecting any of these studies, including Ron Davis's, from the BPS school. They're free to do their own analyses. Kicking them off studies will be no protection against them trying to spin this work.]
 

A.B.

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We're being asked to make an uninformed decision to support the study and I think it stinks.

The say patient involvement is important, but patients are being asked to be brainless cheerleaders. No details have been given on how patients will be consulted and how they will be able to influence the study at various stages. One can reasonably speculate that patient involvement will go through the AFME and AYME charities which have a close relationship to White and Crawley, which have a psychosomatic agenda. White has even engaged in research fraud to support his agenda.

Placing raw data in a public repository is crucial to protect against the results being spun to suit some agenda, and there is no mention of data sharing. Another reason to be skeptical.
 
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Valentijn

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Remember Nath's response when he got bombarded with patients wanting particular people removed from the NIH intramural study? He said that other researchers were being driven away from becoming involved, people on the project were scared of being named - and he defended Wallit's continued inclusion.
Actually, he never said it was other researchers. Just researchers. The one he'd probably be most worried about is Dr Mark Hallett (and the other two people from his team), who has managed to get a fairly senior position for someone involved in so much low-quality and self-sabotaged research.