The ME Association to remain with the CFS/ME Research Collaborative

[AndyPR]

Hmm, I'm not sure. Seems like the situation now is more

 

[charles shepherd]

Rather than responding to all the individual comments, queries and objections that have been raised on social media over the past few days about the MEA statement on our continuing membership of the Board of the CMRC, I have tried to cover most of them in one single response:

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)

 

[Valentijn]

The CMRC has set up an annual two day research conference where the content is almost entirely biomedical research.

How much of it is directly relevant to ME/CFS, versus fatigue in other illnesses? And why is it acting as a platform for any non-biomedical research at all?

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

And excluding some from joining the CMRC at the same time. I'm afraid that the young researchers being helped are the quacks-in-training, not scientific researchers.

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).

Then why is it that Crawley remains a member while continuing to churn out patient-blaming psychosomatic fatigue garbage which doesn't even use the NICE criteria?

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.

Quacks can come from any background. And they are of no use to patients, while often doing a great deal of harm.

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

And the same shit keeps happening, over and over. Your critical views are being ignored. They know you'll keep supporting the CMRC no matter what they do.

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.

The MEA is lending legitimacy to the quackery which the CMRC supports by being on the board and claiming to represent patients. Exactly which charity do you think would take your place? And how does "someone else would do it instead" ever act as any justification for doing something morally questionable?

 

[Large Donner]

Rather than responding to all the individual comments, queries and objections that have been raised on social media over the past few days about the MEA statement on our continuing membership of the Board of the CMRC, I have tried to cover most of them in one single response:

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)

Yet despite all of this Esther Crawley, who is a complete quack, unable to understand the scientific method, unable to critique the PACE trial and is attempting to use the CMRC as a means of gaining further funds for even worse trials pushing herself on PWME, is a danger to children is the deputy chair and the chairperson Steven Holgate continues to offer his unwavering support to her?

 

[Esther12]

After David Tuller wrote to the CMRC to raise concern about Crawley using one of Tuller's blogs to illustrate her slide on 'anti-science' oppostion to her work and 'libellous blogs' Holgate responded by claiming that:

Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair.

@charles shepherd : Do you and the MEA support Esther Crawley in her role as Vice-Chair?

 

[BurnA]

After David Tuller wrote to the CMRC to raise concern about Crawley using one of Tuller's blogs to illustrate her slide on 'anti-science' oppostion to her work and 'libellous blogs' Holgate responded by claiming that:



@charles shepherd : Do you and the MEA support Esther Crawley in her role as Vice-Chair?

One more question, curious if were you consulted prior to Holgates statement?

 

[alex3619]

PS an article I've just read on stupidity.

From my blog here, 28 Rules of Thumb:
14. Stupidity and ignorance are independent of intelligence. Anyone can be stupid or ignorant about something. The only safeguards are objective facts, investigating claims, and reason. You can also ask an expert, but keep in mind the expert is only less likely to be a victim of stupidity or ignorance.

 

[arewenearlythereyet]

@charles shepherd

if all of the board disagrees with you on the matter of patient care that undermines the values of the MEA. Do you really want to be associated with Esther Crawly and her bile.

It's like the liberal democrats in the last coalition......you become the people to blame when it goes wrong and are ignored for the rest of the time.

It really is time to get out ....the MEA associating itself with this motley crew is really doing it no favours whatsoever.

You can do more help for patients outside the Punch and Judy tent. Otherwise by not leaving you condone the action of the chair. Let's face it you don't appear to be making a difference to their hair brained thinking at the moment, or am I missing something?

 

[Cinders66]

I think the MEA would achieve much more being outside the tent if inside the tent has had the impact of just one round of MRC funding plus a £200k study 2015. Lobbying against the awful failings and stitch up of ME & CFS in the uk medical establishment and NHS would be a good place. I also don't see why the MEA signs petitions for the USA to adopt the CCC whilst not pushing for stricter definition and recognition if ME and PEM over here. Indeed one MRC study MEA part funded was with the Oxford criteria MEA are supposed to stand against.

The MEGA study has been successfully dragged out and isn't even going to make much immediate/quick progress for patients. No one on these forums has research separating ME from NICE fatigue as a priority

The biggest thing keeping severe ME ignored is its lumping in with a weak CFS and the behavioural approach to it, I don't see how the big tent approach isn't prolonging this affair.

I appreciate dr Charles shepherd has had the illness thirty years but I don't think his urgency as someone living a high functioning life is the same as the severely affected communities or ron Davis' urgency and that is being reflected n the MEAs get there in the end as long as we get there (how I see it) approach .

 

[Londinium]

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.

Thanks @charles shepherd, I think a constructive but critical approach is the way to go. Am I happy that Prof Crawley has such a high profile role on the CMRC? No. Would I rather that position be taken by UK home-grown Davis/Fluge/Mella? Of course. But there's a lot about this disease that is sub-optimal and this is another one of those things where there isn't a black and white situation with a perfect answer.

So, for me, the question is would I rather the MEA be involved and making the case against PACE and the BPS model, or would I rather it pull out and not let that voice be heard? IMHO, the MEA is damned if it does, damned if it doesn't. As somebody who believes deeply in 'perfect is the enemy of good' I think, on balance, your current position is the right one.

 

[Mesurfer]

Are there ANY organizations in Britain that focus on biomedical research of chronic fatigue syndrome? It boggles my mind if the answers is no.

 

[AndyPR]

Are there ANY organizations in Britain that focus on biomedical research of chronic fatigue syndrome? It boggles my mind if the answers is no.

Invest in ME.

 

[TiredSam]

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.

Who is covering the discipline of paediatrics? If that's a reference to the Bristol child-catcher who has caused untold misery to young ME sufferers and their families, not to mention falsely diagnosing many others, then claiming that the discipline of paediatrics is covered by the CMRC is a bit of a stretch in my opinion, and hardly inspires confidence. Quite the reverse.

 

[Esther12]

Some of Charles' response is on issues I don't think are so important, and right now I think that the key thing is for the MEA to clarify whether they support Crawley as vice chair of the CMRC, but there were some things I thought I'd reply to:

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.

Can it not even openly discuss the controversies around UK CFS research, so that we can move the debate on? You say that MEA puts its side of the case, but why is this not reflected in any of the minutes released? Why do patients never get to see the responses from people like Crawley? At the moment the values of the CMRC seem to reflect all that is worst about British medicine and the desire to keep awkward truths hidden from public view.

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.

A lot of new UK researchers have been brought in and introduced to ME/CFS research, with Esther Crawley presented as a leading expert and someone fit to be PI on MEGA - great? Are you saying that Crawley has been banned from discussing FITNET during her presentation? - she discussed it last year. Personally, I'd like to see her discuss her work, but then be expected to engage honestly with the concerns raised about it, not with the evasive smears we've come to expect from her. Also - £45 is not that small a fee.

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

Have you been reading the research coming out from young British researchers recently? Much of it seems to just thoughtlessly recite garbage from Wessely/White/Crawley. Until we've managed to raise standards amongst UK researchers they might go on doing more harm than good imo.

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.

What was Crawley's response to your concerns? What was the response from other members of the board? Why is it seen as acceptable for patients to be kept in the dark about those who have power over them?

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.

How can you know that? Having the MEA resign in protest at their failing might let them realise that the cannot just go on walking all over patients and ignoring their concerns. Who has filled AYME's place? If AfME were alone on the CMRC board that might put some pressure on them to mprove their behaviour.

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.

But you just said: "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."

So are you open to leaving if members disagree with your judgement or raise concerns that you have not thought of? How will you be assessing this?

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.

I'm very grateful, and have a lot of respect for the work you have put in over the years. But I am also concerned that this long and difficult period of campaigning may have led to you expecting less from the UK research community than is reasonable. There is a wider move within medical research of recognising that patients need to be given more power, and I fear that you under-estimate the extent to which that has stengthened your hand against people like Crawley. Particularly given the growing controversy that surrounds PACE in the international academic community.

I think that there's a growing awareness within the power structures of UK medical research that they might have a real scandal here, and a desire to do what they can to make this go away. A lot of people will be trying to make you feel powerless, and as if standing up against those who have smeared and mistreated patients will only cause more fuss, and make real progress less likely. I think that now is the time to be standing up more assertively than ever [although obviously still making sure to be reasonable and accurate in all we do], and that we have a real chance of bringing about the sort of radical improvements that can only occur when those in positions of power are forced to acknowledge that they have got things badly wrong. I am concerned that the MEA is willing to play along with people like Crawley and Holgate in order to get a few scraps of research (some of which may be genuinely useful, much of which will lead to nothing), and that this will lead to another lost generation of researchers being shaped by prejudice and quackery.

I've seen how badly you and other ME campaigners were treated over the decades, so can understand you being grateful for, and wanting to seize, any small piece of real progress, but I think that we can get much more than Crawley and Holgate will want to offer. And I think that patients truly deserve far more than Crawley and Holgate want to offer. The problems that have occured around ME/CFS research in the UK need to be acknowledged before we can make the progress that is needed. To achieve this we will need to be willing to stand up for ourselves and show that we're willing to risk the scraps they wish to bribe us with.

 

[AndyPR]

I'm very grateful, and have a lot of respect for the work you have put in over the years. But I am also concerned that the long and difficult period of campaigning may have led to you expecting less from the UK research community than is reasonable. There is a wider move within medical research of recognising that patients need to be given more power, and I fear that you under-estimate the extent to which that has stengthened your hand against people like Crawley. Particularly given the growing controversy that surrounds PACE in the international academic community.

I think that there's a growing awareness withing the power structures of UK medical research that they might have a real scandal here, and a desire to do wht they can to make this go away. A lot of people will be trying to make you feel powerless, and as if standing up against those who have smeared and mistreated patients will only cause more fuss, and make real progress less likely. I think that now is the time to be standing up more assertively than ever, and that we have a real chance of bringing about the sort of radical improvements that can only occur when those in positions of power are forced to acknowledge that they have got things badly wrong. I am concerned that the MEA is willing to play along with people like Crawley and Holgate in order to get a few scraps of research (some of which may be genuinely useful, much of which will lead to nothing), and that this will lead to another lost generation of researchers being shaped by prejudice and quackery.

I've seen how badly you and other ME campaigners were treated over the decades, so can understand you being grateful for, and wanting to seize, any small piece of real progress, but I think that we can get much more than Crawley and Holgate will want to offer. And I think that patients truly deserve far more than Crawley and Holgate want to offer. The problems that have occured around ME/CFS research in the UK need to be acknowledged before we can make the progress that is needed. To achieve this we will need to be willing to stand up for outselves and that we're willing to risk the scraps they wish to bribe us with.

I would double like your post just for this section if I could

 

[Hutan]

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.

This, is I think, the core question (why is it important to remain in the CMRC and whether that benefit outweighs the harm). MEA may have answered it, but it is not yet making sense, to me at least.

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.

A good CEO has to keep in mind the sustainability of their organisation. Is there a fear that the MEA's donations and membership fees would dwindle if it wasn't part of the CMRC?

I think most informed people with ME would prefer that the MEA was out of the CMRC and the association with Esther Crawley. I think most people with ME who have not yet learned about the politics of UK ME won't care either way. In terms of the ecology of business, at the moment AfME and the MEA are pretty much occupying the same niche. Exiting the CMRC would be a point of difference for the MEA. Given the way things are heading (away from ME being a psychological/behavioural illness), wouldn't this be a smart move?

Is there a fear that if the MEA is out of the CMRC, the AfME becomes the default go-to ME organisation for government? I would have thought that need not be the case if the MEA has a strong and growing membership and is active in cultivating direct links.

I'm very grateful, and have a lot of respect for the work you have put in over the years.

Absolutely. It's not that we think you are stupid @charles shepherd, not at all. And that's why it is so hard to understand why the MEA would continue to associate with those who promote PACE and Fitnet for, apparently, so little gain.

 

[Esther12]

I would double like your post just for this section if I could

Despite all the typos... why can I only spot them when someone else quotes my posts?!?

 

[AndyPR]

Despite all the typos... why can I only spot them when someone else quotes my posts?!?

Oh, those. I just put those in to make you look less than perfect...

 

[slysaint]

If AfME were alone on the CMRC board that might put some pressure on them to mprove their behaviour.

I doubt this would happen, but it might make AfME members ask why they are the only ME charity to support the CMRC (although AfME are unlikely to inform them).

 

[Esther12]

I doubt this would happen, but it might make AfME members ask why they are the only ME charity to support the CMRC (although AfME are unlikely to inform them).

It might also make it clearer that there were problems with the CMRC and that it was badly losing support from patients. Which I think is the current position.

More of the members of Action for ME have to be waking up to the serious problems with that organisation.