Petition: That the ME Association leave the CMRC

JoanDublin

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I've had a look around and I don't think this petition is posted anywhere else on PR.

It was started a couple of days ago and is requesting that the ME Association leave the CMRC. Given the current news with regard to NICE deciding not to review its guidelines on MECFS, I think this petition really needs attention. Enough is enough. The UK establishment are simply toying with patients and patient organisations.

https://you.38degrees.org.uk/petitions/me-association-to-leave-the-cmrc


"This is to show that the ME Association should best use its resources on biomedical research already happening in the UK and indicate that the CMRC (CFS/ME Research Collaborative) is not fit for purpose.

The collaborative is run and consists of people who consider the PACE trial a good piece of science. The initial aim for the collaborative is to raise a huge amount of money for a biobank when the ME Association is already involved with one which could be improved upon instead. The collaborative has a poor grasp of the definition of Myalgic Encephalomyelitis and the need and urgency of those on the severe end of the spectrum.

The ME Association in leaving the CMRC will help the political situation ME patients find themselves in by opposing those who defend poor science not collaborating with them and thereby indirectly giving them credence. Other authorities and the government will then see clearly where the ME Association stands (and therefore patients) with regards to the biopsychosocial model of ME"
 
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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)
 

daisybell

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It seems to me that the MEA being in the CMRC adds far more value to the other members than it does to the MEA. That value may well be to the detriment of most people with ME. Yes, of course a dissenting voice is important - but the voice of the MEA appears from the outside to be totally ignored. Are you certain beyond reasonable doubt @charles shepherd that membership is actually doing more good than harm?

If the MEA was to leave the CMRC, then that would need to happen with the maximum publicity possible. Leaving quietly is of no use, but it also appears that staying in is actually of no/little good either.

The only other way I can see for the CMRC to change its majority view is for a considerable number of new members to join, who hold a biomedical view of this illness. Currently I don't see that happening.
 

trishrhymes

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If the MEA was to leave the CMRC, then that would need to happen with the maximum publicity possible. Leaving quietly is of no use, but it also appears that staying in is actually of no/little good either.
In theory 'maximum publicity' is a great idea - we need as much publicity as possible about the fact that ME is wrongly treated in the UK, but sadly the media in the UK are either clueless or actively hostile to ME sufferers. The departure of MERUK from the CMRC caused no ripple of media interest at all. It may seem very significant to us, but it means nothing to 99.9% of the population. And the science media centre, if it covers it at all, would use it as an excuse to brand the MEA anti-science.

I take on board all @charles shepherd says, and can see his point of view that it's a good thing to try to influence the CMRC, even though, on balance, I disagree. I appreciate the good intentions.

But - Until the CMRC recognises that the BPS model of ME is wrong, that GET and directive CBT are unethical and unsafe, that the PACE trial is bad science and that all of Crawley's research is of such poor quality as to be dangerous to children with ME, I don't think the MEA should be a part of it.

You can argue behind closed doors all you like, but an organisation that supports bad science should have no place in ME research and the MEA should not be part of it. The presence of some good scientists in the CMRC, if anything, makes this worse, as they appear to be either uninformed or complicit in supporting bad science, which does not reflect well on them.

I think a good parallel would be belonging to an evolutionary science organisation run by and supporting creationists and hoping to persuade them to change their beliefs. Good scientists would think it ludicrous to even suggest they join such an organisation. The BPS model of ME is, like creationism, a belief system, not science.

One thing in particular I don't understand is why the MEA supports the CMRC conference in preference to the IiME conference. It seems a great pity, given the importance of getting all good ME researchers communicating with each other, to split this into 2 separate conferences in the UK. Surely the few good ME science researchers in the UK, and people new to the field should be meeting and talking with the international researchers that the IiME conference attracts.
 

lilpink

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But - Until the CMRC recognises that the BPS model of ME is wrong, that GET and directive CBT are unethical and unsafe, that the PACE trial is bad science and that all of Crawley's research is of such poor quality as to be dangerous to children with ME, I don't think the MEA should be a part of it.
And given the governance of the CMRC that will happen, in the words of The Eagles, 'when hell freezes over'.
 

lilpink

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I think a good parallel would be belonging to an evolutionary science organisation run by and supporting creationists and hoping to persuade them to change their beliefs. Good scientists would think it ludicrous to even suggest they join such an organisation. The BPS model of ME is, like creationism, a belief system, not science.
YES!
 

JoanDublin

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Whilst I agree the MEA should leave the CMRC I am not sure about the timing of this petition as it might negate the NICE guidelines petition and send out the wrong message.
It was started before the MEA one (Im almost sure anyway). I dont think they would get confused. Im sure people who would sign this would also sign the MEA one. After all, who amongst us thinks that the current NICE guidelines are fit for purpose?

They're separate issues and both have merit
 
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In theory 'maximum publicity' is a great idea - we need as much publicity as possible about the fact that ME is wrongly treated in the UK, but sadly the media in the UK are either clueless or actively hostile to ME sufferers. The departure of MERUK from the CMRC caused no ripple of media interest at all. It may seem very significant to us, but it means nothing to 99.9% of the population. And the science media centre, if it covers it at all, would use it as an excuse to brand the MEA anti-science.

I take on board all @charles shepherd says, and can see his point of view that it's a good thing to try to influence the CMRC, even though, on balance, I disagree. I appreciate the good intentions.

But - Until the CMRC recognises that the BPS model of ME is wrong, that GET and directive CBT are unethical and unsafe, that the PACE trial is bad science and that all of Crawley's research is of such poor quality as to be dangerous to children with ME, I don't think the MEA should be a part of it.

You can argue behind closed doors all you like, but an organisation that supports bad science should have no place in ME research and the MEA should not be part of it. The presence of some good scientists in the CMRC, if anything, makes this worse, as they appear to be either uninformed or complicit in supporting bad science, which does not reflect well on them.

I think a good parallel would be belonging to an evolutionary science organisation run by and supporting creationists and hoping to persuade them to change their beliefs. Good scientists would think it ludicrous to even suggest they join such an organisation. The BPS model of ME is, like creationism, a belief system, not science.

One thing in particular I don't understand is why the MEA supports the CMRC conference in preference to the IiME conference. It seems a great pity, given the importance of getting all good ME researchers communicating with each other, to split this into 2 separate conferences in the UK. Surely the few good ME science researchers in the UK, and people new to the field should be meeting and talking with the international researchers that the IiME conference attracts.
Re your last para on the IiME and CMRC conferences:

The MEA publicises and promotes (in the MEA magazine and on our social media) both of these conferences each year - because they both make an important contribution to the ME/CFS research agenda

I attend both conferernces each year and produce a detailed report on both conferences for the MEA website and the MEA magazine

The MEA magazine reports for the IiME conferences are, in fact, normally longer than the CRMC conference reports

Examples of MEA website reports:

CMRC in Newcastle: http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

IiME in London: http://www.meassociation.org.uk/201...y-for-sharing-ideas-on-research-20-june-2016/

Worth noting that there are also some similarities and differences between the two meetings:

The two day CMRC conferences is aimed at researchers and is open to any clinician or researcher who wants to attend. People with ME/CFS can attend on the first day of the CMRC meetings - for a very small fee.

The first two days of the IiME meetings are, if my understanding is correct, only open to researchers and this has to be by invite. The Friday event is open to both patients and researchers - but this is essentialy a meeting aimed at people with ME/CFS

Both events attract a good number of researchers from both here and abroad, researchers who are new to the subject, and medical students.

The MEA funds four medical students to attend the CMRC conference.

The emphasis at both conferences is on a biomedical model of causation and management of ME/CFS

CS
 
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I don't agree with any of this. It's naivety in action imo and is harming advocacy.
I have just explained some of the reasons why we are remaining on the Board of the CMRC

This discussion has taken place many, many times on social media over the past few weeks and months and there is very little that I can add to the debate that is new

So I think we are just going to have to agree to disagree on MEA membership of the Board of the CMRC

CS
 

lilpink

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So I think we are just going to have to agree to disagree on MEA membership of the Board of the CMRC
That might be fine and dandy if peoples lives didn't depend on it. Given ME politics have such a profound effect on patient's lives a patient charity being a member of the CMRC affects each one of us with this disease. And not, imo, for the better. So whilst your intransigence means that I have to 'lump it' I simply don't have to 'like it', nor shut up about why I don't like it. Thus I fully support this petition but I have had no input in its creation.
 
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That might be fine and dandy if peoples lives didn't depend on it. Given ME politics have such a profound effect on patient's lives a patient charity being a member of the CMRC affects each one of this with this disease. And not, imo, for the better. So whilst your intransigence means that I have to 'lump it' I simply don't have to 'like it', nor shut up about why I don't like it. Thus I fully support this petition but I have no input in its creation.
Fair enough…...

If you are a member of the MEA you will know that we are regularly talking to our members about the CMRC and our membership of the Board

We take note of and very much welcome comments from our members on this issue - but I suspect that you are not a member of the MEA!

CS