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.
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Petition: That the ME Association leave the CMRC

Discussion in 'Petitions' started by JoanDublin, Jul 11, 2017.

  1. lilpink

    lilpink Senior Member

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    Tacit-endorsement-by-charity is crucial for the CMRC given that the politics (not to mention the science) is moving so quickly around this disease. The CMRC need the MEA more than the MEA need them (obviously the MEA are tarnished by the association imo and so there is no tally of 'need' in that regard and the relationship is a negative one). I think it's fairly clear that the MEA has no power to change anything within the CMRC at all. They haven't even managed to get Holgate and Crawley to explain themselves over the Tuller / libel issue and I'd wager it would be a 'pig flying' day if that ever happened outside some sort of arena where these people are pressed under some sort of oath. The CMRC couldn't care less for the MEA, they couldn't care less for patients (edit: IMO). The CMRC from my viewpoint is simply a cynical construct on the part of Peter White (now no longer involved.. mmm..) and Esther Crawley to attempt to hold the reins on all things ME/ CFS, call it what they will, to continue to steer their paradigm in the direction they want it to go. After all their livelihoods depend on trying to keep hold of the horses whilst the horses are braying and kicking and trying to free themselves from their harness. If the MEA left the CMRC I can't imagine any bottles being cracked ... a flurry of worried emails and phone calls whilst they try to decide how to re-group possibly, a stiff gin and double scotch to steady the nerves maybe... but 'celebration'..no.

    EDIT: to make clear in this series of posts I use the acronym 'CMRC' to mean the governance at the CMRC and the associated preferred BPS model of Crawley et al. I am in no way tarnishing those academics who may have been unwittingly drawn to the enterprise ( very possibly without any notion of how contentious those who started the venture happen to be in the consciousnesses of many/ most patients with ME. )
     
    Last edited: Jul 14, 2017
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  2. emmaj

    emmaj

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    I wasn't and I'm not expecting it to be finished any time soon. I wasn't planning on talking about it to Charles for a while but this thread turned up so I felt I had to put across my views and it was maybe a good place for patients to discuss it without MEA input. Charles could easily say 'I'm sorry I can't look at this right now, I take on board your concerns and will take a look at this properly after the NICE guideline consultation as I'm really busy' if that's what he thinks. It's all about communicating in a way that doesn't inflame which I'm afraid he hasn't managed well. I am not normally this direct but some of the responses have been unacceptably rude in my opinion.
    I agree the NICE guidelines are important which is why I started bugging my MP and Sir Andrew Dillon about them 18 months ago and have signed the MEA petition and have spread that petition far and wide. However I think this issue is just as important even if you don't.
     
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  3. lilpink

    lilpink Senior Member

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    Ummm .... seriously? The NICE 'review' makes this all the more pressing. I'm not sure how that part of the equation is so tricksy to grasp. The BPS school can, should they choose, use the MEA membership of the CMRC as tacit patient charity endorsement of their model and therefore their treatment preferences. The MEA leaving the CMRC now could be used to draw attention to the disapprobation the MEA have for the BPS model.
     
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  4. lilpink

    lilpink Senior Member

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    It is impossible to second guess the thought processes at Wellcome apropos the OMEGA petition (still open here: https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg) but all senior members of Wellcome were sent information about the petition, ie not just those who might be directly interested in MEGA per se. Whether they collectively discussed and assessed the weight of patient censure with regard to the proposal is anyone's guess, but in the absence of that knowledge it's probably fair to say the petition was as likely a contender as any other pressure that might have been brought to bear to change their minds.
     
  5. A.B.

    A.B. Senior Member

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    Having patient support is increasingly important to obtain funding.

    If there was no patient support whatsoever for certain studies, I think it would be undeniable that there are very serious problems with the research.

    Yet AfME and to some degree the MEA allow people such as Crawley to claim that there is patient support for their studies.
     
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  6. trishrhymes

    trishrhymes Senior Member

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    Correct me if I'm wrong, but I think the CMRC/MEA petition went up before the MEA/NICE petition. And discussing one doesn't preclude discussing the other. I have no difficulty in keeping the two issues separate in my head, and have signed both.
     
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  7. Skycloud

    Skycloud Senior Member

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    I think it's more likely that the MEA petition and their submission as a stakeholder, (and their previous history of engagements with NICE) will do this. The MEA are articulate.

    edit to add - It's fair that the MEA should consider the opposition to membership of CMRC, but this week I think NICE should be taking Charles' attention.
     
  8. Valentijn

    Valentijn Senior Member

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    I expect people will continue talking about it as long as they're interested in it. You and Charles are free not to participate, of course.

    But the topic has been ongoing for weeks, if not months, and with ongoing dismissal of patient concerns, and ongoing refusal to answer some simple questions about what the MEA has been able to accomplish for patients by supporting the CMRC. Asking people to delay the topic rather sounds like a desperate attempt to derail any momentum and hope it goes away in the interim.

    There has been no MEA indication of interest in fully looking into it later, or even the possibility of taking member or patient desires into account at some point. Frankly, I don't think the MEA deserves a break, a pass, or even a delay on this discussion by patients. All signs point to the MEA continuing to completely ignore the patient community on this point.

    Hence I think patients should continue to let the MEA know that they strongly oppose its membership in the CMRC, and continue to attempt to engage in some meaningful dialogue with the MEA on that topic.
     
  9. lilpink

    lilpink Senior Member

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    I agree..the weight of signatures is impressive. But as an organisation they remain compromised, imo, and to leave the CMRC at such a pivotal moment would send a compelling signal of disapprobation of the BPS model which would surely strengthen their argument and build on the petition? Atm the petition is at odds with their tacit endorsement of the BPS model by virtue of their continued presence at the CMRC. It's paradoxical and demonstrates, I believe, a muddled underlying philosophy in terms of how best to advocate.
     
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  10. lilpink

    lilpink Senior Member

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    For interest:

    I have been told that Daily Politics (today 14th July 2017) has been discussing how best to protest. I intend to catch it on i player. I have no idea whether a consensus was reached or not.
     
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  11. anniekim

    anniekim Senior Member

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    MEA support MEGA
     
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  12. JoanDublin

    JoanDublin Senior Member

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    The MEA have been fully behind MEGA all the way. What makes you think they might want to hold it up?
     
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  13. charles shepherd

    charles shepherd Senior Member

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    I appreciate that most people on this discussion forum will not like the reply I am making today and that this will only lead to yet more complaints

    But I really do have far more important things going on at the moment that require my attention - so there is a limit to the amount of time that I can spend on non MEA social media interacting with people who are not generally members of the MEA

    This is addition to what is currently a quite time consuming job dealing with queries and comments on our own social media - which is not surprisingly very busy right now with the MEA petition and various other topics

    So I will not be contributing to this discussion again today - apart for this post

    I have edited the post I made last night (this is inserted below) to cover some of the points that people have raised (eg the way in which we consult with MEA members) and corrected some of the inaccurate statements and claims regarding our position re MEGA etc

    As far as why we are a member of the Board of the CMRC, and what the CMRC has been doing in relation to ME/CFS research, I have already covered this in a fairly detailed response that I previously made on this thread.
    I have inserted this again below

    Finally, I will point out, yet again, that the remit of the CMRC is to bring together everyone that is involved in ME/CFS research into ME/CFS here in the UK.

    That means including a wide spectrum of people with strong and differing views on causation and management.

    This group meets regularly on a face to face basis to discuss and debate what can be significant differences of opinion. We agree in some areas. We disagree in other areas.

    Membership of the CMRC Board also includes representatives from all the main research funding streams for ME/CFS and representatives from the pharmaceutical industry.

    The CMRC organises an annual two day research conference to bring in new researchers and has carried out a number of other research initiatives - all of which will carry on if the MEA left the Board.

    The CMRC has no funding, no staff and no active volunteers - so there is a limit to what it can actually achieve.

    The MEA believes that it is important for the charity sector to be able to put the case for biomedical research to what is a very infuential group of people and take part in the debates that take place. This is why we remain on the Board of the CMRC.

    CS
     
  14. charles shepherd

    charles shepherd Senior Member

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    Previous response added to:

    OK - it is very clear that some people on PR don't like the type of carefully thought through and constructive (rather than shouting) advocacy and campaigning that myself and the MEA am involved with - but someone has to do it

    The MEA has been the only charity to organise a petition calling on NICE to overrule their experts on the ME/CFS guideline review - with nearly 9000 signatures being collected so far in just four days

    I have just written to Board members on the CMRC today to let them know how strongly the MEA is opposing the decision to not update the guideline. From the PR petition thread:

    I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

    I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of quite overwhelming patient dissatisfaction can be ignored by NICE

    NB: The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

    However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

    Interesting to note some of the names on the NICE stakeholder list:

    British Medical Journal
    Cochrane centre for depresion, anxiety and neurosis
    Eli Lilly (drug company)
    Ministry of Defence
    Royal College of Psychiatrists

    Full list of ME/CFS stakeholders in the ME/CFS guideline here:
    https://www.nice.org.uk/.../documents/stakeholder-list-2

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    The MEA was also the only charity to organise a petition opposing the PACE trial when it was being organised

    We are also funding Dr Keith Geraghty at the University of Manchester to carry out a two year research study that will analyse the theoretical basis for recommending the use of CBT and GET in people with ME/CFS. MEA announcement:

    http://www.meassociation.org.uk/201...-treatments-recommended-by-nice-13-july-2017/

    I have spent most of this afternoon writing a review of how GPs can improve the diagonsis and management of ME/CFS - something that followed on from having a meeting with senior representatives of the Royal College of General Practitioners and the Countess of Mar back in June

    See Minutes on another PR thread:
    http://forums.phoenixrising.me/inde...-on-june-22-2017-at-the-house-of-lords.52811/

    This advocacy has also resulted in an invitation to organise a Workshop on ME/CFS at the annual Royal College of General Practitioners (RCGP) conference in Glasgow - see FMG Minutes

    On Tuesday this week I was at a meeting with Dr Diane O'leary from the Kennedy Institute of Ethics in Washington to talk about medical ethics in relation to the way people with ME/CFS are being treated (and mis-treated) by the medical profession here in the UK - see another discussion on PR

    As far as I am concerned these are very constructive and useful approaches to advocacy that take a lot of time and effort - and there are several others taking place 'behind the scenes'

    Finally, for the benefit of people on PR who are not members of the MEA, we have regularly asked our members for their views on both the charity's membership of the CMRC and our position on the MEGA research study through our MEA Facebook Page and through ME Essential, our quarterly magazine - ME Essential. To date the feedback on both of these topics has been minimal - which suggests that our members are satisfied with the way in which we are dealing with both of these controversial topics. When MEA members disagree with something we are doing, or proposing to do, they soon let us know. I do not have exact figures to hand but my understanding is that we have had about 10 to 15 emails and phone calls about membership of the CMRC (with a significant proportion coming from non members) over the past few months. I think we have had three or four people who have decided to terminate membership, or are thinking about the termination their membership of the MEA, as a result of our position on MEGA (which is to decide whether or not to endorse/support the study when we have details of the study design and patient selection process) and/or our membership of of the CMRC. We have not had any communications from people relating to the NICE guideline review and our membership of the CMRC. We have also received messages of support for our position from other members. We continue to genuinely welcome input from our members on both topics. The content of any emails or phone calls that are received are forwarded to all MEA trustees for their consideration.

    So yes, I am feeling rather p....d off tonight

    And I am not going to waste any more time today with arguements that are going nowhere

    I have better things to do this evening...

    CS
    (Content added to at 11.20pm on 13th July)
     
  15. charles shepherd

    charles shepherd Senior Member

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    Original contribution to this discussion:

    For people on PR who are not aware of some (but not all) of the reasons why the MEA has decided it is far better to remain on the Board of the CMRC than to leave and cut the charity representation right down to one (i.e. AfME), this is my most recent summary:

    1 The CMRC has no staff of funding. It does not therefore fund any research and will not be funding research.

    2 Members of the Board of the CMRC obviously have a very full diary of work and other voluntary commitments - so there are limits to what the CMRC can do or achieve.

    3 The MEA receives no government funding. The work we do in relation to information, support, campaigning and research is carried out by a small number of staff, trustees and volunteers. We rely on donations and membership fees.

    4 CMRC work forms only a very small part of MEA research activity - the vast majority of my research time is spent dealing with our currently funded research studies (ie metabolomic and muscle/mitochondrial research, post mortem tissue research, severe ME/CFS) and developing UK research infrastructure (eg the ME Biobank at UCL/Royal Free Hospital) that we fund.

    ME Biobank: http://cureme.lshtm.ac.uk

    Link to all the current research being funded by the MEA Ramsay Research Fund:http://www.meassociation.org.uk/research2015/

    5 In relation to what the CMRC has achieved:

    The CMRC has set up an annual two day research conference where the content is almost entirely biomedical research. These conferences are open to any researcher who wants to attend.

    They have succeeded in bringing in a considerable number of researchers from a variety of biomedical -ologies who are new to the subject of ME/CFS research. My report on the CMRC conference in Newcastle will confirm that the content of the CMRC conference is biomedical research and not psychological research.

    The public can attend the first day of these conferences for a very small fee.

    Newcastle conference report link:
    http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

    6 In addition to the annual two day annual research conferences, the CMRC has, or is, involved with a number of other research initiatives. These include:

    - the recent report on research funding for ME/CFS:
    http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

    - the recent meeting that brought together all the main government funders of ME/CFS research - MRC, NIHR, NIH from America etc - as well as charities and representatives from the pharmaceutical industry

    - meeting with representatives from various pharmaceutical companies to get them interested in ME/CFS research

    - setting up a scheme to help young researchers prepare research grant applications

    7 The Board of the CMRC covers a wide spectum of views relating to both cause and management of ME/CFS.

    Members of the Board of the CMRC cover a wide range of disciplines - autonomic nervous system dysfunction, general medicine, genetics, infectious diseases, immunopharmacology, neuropathology, paediatrics, sleep. We have one doctor on the CMRC Board who is a psychiatrist.

    Whilst some members take what is often referred to as a biopsychosocial view of causation, there are others who do not.

    The CMRC has made it clear that:
    One of the main challenges that continues to be addressed is that this illness, or cluster of illnesses, is a psychiatric illness, which it is not (reference: Minutes for CMRC Board meeting held on 21st March 2017).

    8 Where the MEA disagrees with another member (or members) of the Board of the CMRC we make our views known - as we did in relation to the response regarding the presentation slides that were used at the British Renal conference for example.

    We have also made our very critical views on the NICE guideline, PACE trial, Science Media Centre etc all very clear on numerous occasions.

    This does inevitably create difficulties and tensions with some members of the Board. Our disagreements and public statements regarding the PACE trial (and other issues) did, in fact, form part of the reason for one member of the CMRC Board tendering his resignation.

    Pace trial:
    http://journals.sagepub.com/doi/full/10.1177/1359105317703786

    SMC:
    http://www.meassociation.org.uk/201...sociation-writes-to-the-science-media-centre/

    I do not sit quietly by when the MEA disagrees with something at the CMRC.

    But we do not walk out when the majority of the Board take a different view.

    9 We have already made it clear why we feel it is more important to remain as a member of the Board of the CMRC - even though we do not agree with some of the decisions that are being made. So I will not go over this ground yet again.

    10 If the MEA left the Board of the CMRC it would still carry on with all the work it is doing, including involvement with the MEGA research study. All that would happen is that our position as a charity representative would be left vacant or be filled by another ME/CFS charity.

    11 We will continue to review our position on the Board of the CMRC - and this will include taking careful note of what MEA members are saying about our involvement with the CMRC.

    Finally, on a personal note, I have had this wretched disease for over 30 years - which followed an epside of chicken pox encephalitis that I caught from one of my patients.

    I want to find the cause and an effective form of treatment.

    And this is why I want to take a constructive and (where necessary) critical part in any research initiatiivee that is involved in either causation or treatment of ME/CFS.


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    (June 19 2017)
     
  16. charles shepherd

    charles shepherd Senior Member

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    I will look at this discussion again on Saturday

    CS
     
  17. emmaj

    emmaj

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    "The CMRC has no funding, no staff and no active volunteers - so there is a limit to what it can actually achieve."

    I rest my case your honour.
     
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  18. emmaj

    emmaj

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    FWIW providing that research grant to Keith Geraghty is such a better use of time and resources - more like that please!
     
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  19. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I think the questions have been "how are you canvassing opinion?" and "show me why you think that most members want to stay in the CMRC?". It sounds like you are suggesting that donation paying members have no right to request this or that the MEA hold no responsibility to their members to represent their views?

    I may be misquoting the adage but so far we have asked the MEA to "tell me" which they have done to a good degree (I.e stating the views of the trustees and that they have considered the views of members). However they have consistently refused to demonstrate the "show me" part (how have you considered the view of members)

    My expectations are that membership based charities should be more accountable than you describe so I fundamentally disagree with your view of the casual nod to accountability seen in much of our councils, regulatory bodies and Westminster offices nowadays.
     
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  20. lilpink

    lilpink Senior Member

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    This was already happening via the Invest in ME Colloquium years in advance of the CMRC and without the strangle hold of some very odd rules of engagement. Ie: a genuine 'collaboration'. The only difference would be as far as I can see that the Invest in ME associated collaboration does not subscribe to...

    .. in the sense that they reject the BPS model held by the Deputy Chair, Esther Crawley, and thus do not dilute / muddy the waters with that sort of nonsense.
     

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