The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Counter petition to the MEGA petition, brainstorming stage

Discussion in 'Petitions' started by AndyPR, Sep 29, 2016.

  1. AndyPR

    AndyPR Tired Sam ate all the cookies!

    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.
     
    Mel9, mango, John Mac and 11 others like this.
  2. AndyPR

    AndyPR Tired Sam ate all the cookies!

    OK, my suggestions to kick off.

    Title: Remove White and Crawley from MEGA. Or remove and exclude psychiatrists from MEGA. Or ????
    Decision maker: Would this be MEGA itself. Or the CMRC. Or ?????
     
    Mel9 likes this.
  3. Esther12

    Esther12 Senior Member

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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:

    (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):

    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.
     
    Last edited: Sep 29, 2016
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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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.
     
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  5. Esther12

    Esther12 Senior Member

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    Bad idea to complain about a profession anyway. There are good and bad psychiatrists. We just seem to have attracted a lot of the worst of them!
     
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  6. Jan

    Jan Senior Member

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    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:
     
    Last edited: Sep 29, 2016
  7. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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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)
     
    Last edited: Sep 29, 2016
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  8. Liz_999

    Liz_999

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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.
     
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  9. Esther12

    Esther12 Senior Member

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    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?
     
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  10. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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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:
    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.
     
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  11. trishrhymes

    trishrhymes Senior Member

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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.
     
  12. A.B.

    A.B. Senior Member

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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).
     
    Last edited: Sep 30, 2016
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  13. A.B.

    A.B. Senior Member

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    Also, the goal should be to shape the study, not shut it down.
     
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  14. A.B.

    A.B. Senior Member

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    Mady Hornig is a psychiatrist too, and nobody is complaining. We're dealing with a belief system more than a particular profession.
     
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  15. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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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.
     
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  16. AndyPR

    AndyPR Tired Sam ate all the cookies!

    Thanks for all the suggestions and thoughts so far, please keep them coming, as previously stated I have limited online time today so will be more involved tomorrow.
     
    Mel9 likes this.
  17. user9876

    user9876 Senior Member

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    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.

    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.


    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.
     
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  18. Sasha

    Sasha Fine, thank you

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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:

    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.]
     
  19. A.B.

    A.B. Senior Member

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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.
     
    Last edited: Sep 30, 2016
  20. Valentijn

    Valentijn The Diabolic Logic

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    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.
     

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