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

Well, looks like the MEA enjoy all the circus acts that take place in the CMRC big top, so are going to stay in there...

The MEA has no intention of leaving the CMRC at the present time. Trustees have considered the limited evidence from the recent lecture given by Prof. Crawley to the British Renal Society, and while we did not agree with the response given at the time to David Tuller – and said as much to the CMRC board – we feel we should remain a part of the collaborative and continue to support its aims where we can.

We believe the CMRC will continue to raise awareness and strive to attract greater funding for research into ME/CFS. We think that it offers the best chance of achieving success with the big funding bodies and with industry in the UK compared to even the most ambitious patient-oriented funding initiatives. And we would rather be able to have some influence on the quality and aims of such developments by remaining at the table than by trying to make ourselves heard from outside.

Belonging to a collaborative, which consists of a wide spectrum of clinical and research opinion on both cause and management, can be a very challenging and difficult task. This is particularly so when members disagree. But we believe it is important to remain an active part of the CMRC especially when it has a considerable influence over the direction that research in the UK is taking.

This also comes at a time when a number of important developments are taking place that involve the CMRC – for example:

  1. Design of the MEGA bioresource and discussion relating to related research studies with involvement of the Patient Advisory Group. In order for the MEA to reach a decision about whether or not we will support the MEGA project we need to be involved in the discussions about MEGA that occur within the CMRC.
  2. Follow up to a very important meeting that took place recently about future funding for ME/CFS research. This meeting included representatives from major funding bodies such as the MRC, NIHR, NIH (National Institutes of Health), pharmaceutical industry partners, and charity representatives. The topic was met with great enthusiasm by those who took part and the MEA would want to remain involved in future discussions with these funders.
  3. The 2017 CMRC research conference taking place in Bristol is aimed solely at biomedical research and increasing our understanding of this disease. This is the fourth CMRC conference and will feature experts on neurovirology, imaging and orthostatic intolerance. The MEA continues to believe that these conferences are important in bringing together experts from inside and outside of ME/CFS research and helping inform future research direction and we would not want to lose our influence in this area.
The ME Association will agree with colleagues on the CMRC Board much of the time and we will disagree at other times. We see this as being no different than when we engage with representatives of the Department of Work and Pensions (in relation to benefits) or NICE (in relation to the NICE guideline on ME/CFS). We will continue to do our best for people with ME/CFS and we feel the best way we can do this is through active engagement and participation.
Full quote but original can be seen here http://www.meassociation.org.uk/201...he-cfsme-research-collaborative-16-june-2017/
 
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It seems a pity to me that the MEA seem to only have taken into account in their discussion the recent screenshots showing Esther Crawley denigrating patients and accusing patients and David Tuller of harrassment and being anti science. I can see that on its own this may not have been held to be sufficient evidence not to continue to work with her, though I disagree with them.

BUT...

I don't understand why they didn't at the same time look more closely at Crawley's whole approach to research - the FITNET advertising campaign claiming success before the trial started, the trial of the Lightning Process on children, lots of published studies that conflate the symptom chronic fatigue with CFS/ME, and countless small studies she has put her name to that make completely unfounded deductions of causation on the basis of slight correlations, such as blaming mothers.

She has repeatedly demonstrated that she is unfit to work with children with CFS, and is completely unscientific in her research methods. And Stephen Holgate supports her and all her work without question. Neither has expressed any concern about the whole PACE scandal, indeed Crawley calls it a great trial.

With these two individuals as chair and deputy chair of the CMRC, and their cheerleader, AfME running the secretariat and supporting them unquestioningly, I can't see how the MEA can consider the organisation ethical or suitable to be at the heart of ME research in the UK. Nor can I see them having a snowballs chance in hell of influencing the direction of the group.

And now we hear from the MEA statement that the CMRC is taking on the role of discussing funding for ME research at national and international level. This places Crawley as king pin in the whole of British ME research funding decisions - a deeply disturbing development.

I am very disappointed in the MEA.
 
If the MEA feel that they have influence within the CMRC then surely they can give us examples of where they have been able to use that influence. As a current MEA member, I would like to know that my association is spending it's time wisely and achieving results - if examples can't be given of any results then I would question why my association is spending it's time within this organisation.
 
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If their statement is genuine, I just think they are grossly overestimating the amount of influence that they have over anything that goes on with the CMRC.

And under-estimating the harm that their continued membership will do, by legitimising the CMRC and allowing them to claim continued support from patients. It now seems clear that the CMRC is getting in the way of attempts to raise standards in a way that will be uncomfortable for those researchers who have built careers on junk-science.

Does Esther Crawley have the MEA's support to continue in her position at the CMRC?
 
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MEA seem to only have taken into account in their discussion the recent screenshots showing Esther Crawley denigrating patients
they also appeared to have overlooked her recent participation in the MUPPETS conference, and participation in a series of talks with Peter White and Simon Wessely; quite apart from all the dodgy research papers she has churned out.................plus of course the whole MEGA debacle.

I don't get it, the same as with AfME.

Is there anything on FB?
 

Londinium

Senior Member
Messages
178
Sooo... as a long-time lurker who has only just opened an account I'm going to hesitantly dip a toe in the water here and, with trepidation, say I support the MEA's position for now. It's entirely a utilitarian argument, but this looks like the best chance to get MRC to provide funding for biomedical research into ME. If that means the MEA needs to work with those we would rather weren't involved then unfortunately, for now, I think it's a compromise worth making. My view would change the moment it comes evident that funding is being proritised to biopsychosocial research.

I say this on the basis of the alternative: the BPS crew have managed to build a picture in the UK that ME patients are mentally ill and hostile to researchers. If patient groups refuse to engage with the CMRC before it even really gets going then that feeds into this picture. It would be portrayed as 'these people are beyond help'. Therefore, I think it's important - imperfect though it is that BPS researchers are involved - that the MEA engages with the CMRC. As I say, if the CMRC then just funds BPS research then my view would change. But cautious engagement for now remains, IMHO, the best (or least worst) approach.
 
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It's entirely a utilitarian argument, but this looks like the best chance to get MRC to provide funding for biomedical research into ME.

Hmm. I think if the MRC wanted to fund biomedical research into ME they would have done it by now.

At some point it pays to cut your losses and realise that by supporting the CMRC you are legitimising the research of all it's members.

Too much harm is caused by following this approach.

We don't need the CMRC and while funding from the MRC would be nice why should this have to come via the CMRC.
 
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Sooo... as a long-time lurker who has only just opened an account I'm going to hesitantly dip a toe in the water here...

I say this on the basis of the alternative: the BPS crew have managed to build a picture in the UK that ME patients are mentally ill and hostile to researchers. If patient groups refuse to engage with the CMRC before it even really gets going then that feeds into this picture. It would be portrayed as 'these people are beyond help'. Therefore, I think it's important - imperfect though it is that BPS researchers are involved - that the MEA engages with the CMRC. As I say, if the CMRC then just funds BPS research then my view would change. But cautious engagement for now remains, IMHO, the best (or least worst) approach.

Welcome to the forum!.. now please allow me to bite your toe off.

The CMRC has been going for a while now - since 2013. I was in favour of cautious engagement at the time, but the way they have acted about the controversies surrounding PACE have made it clear that they are making progress harder, and that they're there to serve the interests of researchers, not patients.

So long as the UK research community is so influenced by prejudice about ME, do we even want more money to be given to them for research? It seems to keep doing more harm than good. The priority should be to raise standards, and make it clear that researchers will not be able to go on getting away with shoddy research, spun results and the smearing of patients and critics. At the moment we cannot assume that attracting more research funding, even for work which looks like it could be useful, will be a good thing in the UK. Anything which serves to entrench the position of researchers like Crawley will be a bad thing for patients in the medium to long-run.
 
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I was just reading a blog about the setting up of the CMRC, which included this statement from the MEA:

The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice.

http://phoenixrising.me/archives/16786

It reminded me that the quote about being 'inside the tent' was actually about trying to keep people in the tent in order to limit the harm that they can do to you through their opposition.


As someone who, like Tuller, is now outside the CMRC tent, it feels like I'm getting wet.
 
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LOL - some comments from me on the CMRC at the time

Esther12 May 1, 2013, 2:10 pm
I'm surprised so many people are voting 'definitely not'– so far I can't see any reason why the MEA's involvement is a bad thing. I rarely go for 'definitely' anything! I went for 'yes – with caution'.

I understand people being wary though, given the way it was promoted, failure to acknowledge past problems, and some of the people involved.

Whoops...

I was still a bit concerned a couple of months later though:

Esther12 June 5, 2013, 6:10 am
I think that the collaborative is probably worth being a member of… but I'm not sure, and I think that it's possible that it would have been better to have had the main charities just go on the attack, and push for the release of data from PACE which followed the trial's protocol and more accurately indicated the efficacy of treatments.

It's possible that good new research will help patients soon… but I think that a more reliable way of improving things would be to try to undo the harm done by poor and spun research. I don't think that more research is necessarily a good thing. Less research, but done to a higher standard would probably be preferable imo.

Also, re the SMC involvement – they are hacks. They've recently been celebrating their role in the way PACE was presented to the media, and the way that they were able dum up concern about anti-psychiatry CFS patients while glossing over the problems with the poor psychiatric research which surrounds CFS: [then posted a load of excerpts from the SMC about them being crap]
 
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It's entirely a utilitarian argument, but this looks like the best chance to get MRC to provide funding for biomedical research into ME.
This hasn't happened yet, why would it start happening now?

My view would change the moment it comes evident that funding is being proritised to biopsychosocial research.
All of the funding goes to BPS quackery. The CMRC is doing a lot to harm patients and little or nothing to benefit them.

I say this on the basis of the alternative: the BPS crew have managed to build a picture in the UK that ME patients are mentally ill and hostile to researchers. If patient groups refuse to engage with the CMRC before it even really gets going then that feeds into this picture.
So we should be held hostage by hate speech from supposed researchers, to the extent that we should support something doing us harm? That's frankly absurd.

I'm also very disappointed with the MEA. They're legitimizing quackery, even if that's not their aim.
 
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Just like to add my disappointment at the MEA's position. I find the chummy dinner and drinks bit particularly distasteful.

Very sad but their ongoing silence since the events already told us their position. They have now well and truly tied their colours to the mast of the sick ship "sleaze"

My membership will not be renewed., especially if some of my money will be used to prop up the BPS careers.
 

Demepivo

Dolores Abernathy
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411
PS an article I've just read on stupidity.

https://www.theguardian.com/lifeandstyle/2017/jun/16/oliver-burkeman-laws-of-stupidity-donald-trump

Part of the problem is that we assume that certain kinds of people – educated people, powerful people, suit-wearing professionals, people we agree with politically – can’t be stupid. In fact, Cipolla insists, stupidity arises equally in all segments of the population.

But the non-stupid never grasp this, so they’re doomed to be surprised, over and over: “Always and inevitably everyone underestimates the number of stupid people in existence.”

What makes stupid people so dangerous is that you can’t refer to their own self-interest to predict or explain their actions/QUOTE]
 
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Snowdrop

Rebel without a biscuit
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2,933
Is this true?

Don't they have a closed doors session where they invite all the psycobabblers in?

http://forums.phoenixrising.me/index.php?threads/2017-cmrc-conference.50984/

In the UK this is irrelevant as any biological research emanating from the UK will be plugged into the mind/body paradigm of the illness. The whole point (for everyone else) is to find a cure and in the interim perhaps effective treatment that leads to significant Quality of Life. But for the Psychosocials the only purpose of any research is to provide a rationale for using their preconceived ideas.