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

[Wolfiness]

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.

They got PDW to resign from MEGA following a heated debate…

 

[slysaint]

the BPS crew have managed to build a picture in the UK that ME patients are mentally ill and hostile to researchers

And they will continue to do so as long as they are given legitimacy by patient support groups/charities.

I think that a lot of ME sufferers either forget or don't know that, regardless of what they are coming out with now,
they (the Wessely school/BPS lot) believe that :
ME/CFS is psychosomatic, caused by deconditioning, due to lack of exercise, caused by fear of exercise, due to patients falsely believing they are ill.

No matter how many times they use the word biological this remains their core ideology.
They continue to spread this message and choose to ignore real biomedical research showing otherwise.
PACE and all it stands for is the line in the sand.

 

[lilpink]

It's a complete sell out. I hope they have a long, long spoon... shameful. Tbh I really didn't think they were quite that stupid.

 

[lilpink]

Given the MEA statement seems to imply the MEGA proposal is still conceivably 'in the works' it seems an appropriate time to remind people of this:

https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg

 

[Londinium]

I think that a lot of ME sufferers either forget or don't know that, regardless of what they are coming out with now,
they (the Wessely school/BPS lot) believe that :
ME/CFS is psychosomatic, caused by deconditioning, due to lack of exercise, caused by fear of exercise, due to patients falsely believing they are ill.

Certainly, and please don't take my post as a defence of the biopsychosocial model which has all the scientific legitimacy of faith healing. I just think the cure for that, the thing that will debunk it, is more research. If the CMRC gets new people working in the field or more funding I think that will go further towards moving the accepted view away from ME being psychosomaticism despite the involvement of a couple of BPS proponents (whom I guess are tying their sails to this mast because they sense the science is moving away from them). I remain unconvinced that a patient group boycott would suddenly lead to the BPS crew making a public confession that their model is bunk. But to scientists who are only casual observers of the debate around ME but who are considering moving into the field it may feed into the unfair stereotype that this is an area of research to avoid. Which is why I think cautious engagement by the MEA and other groups is reasonable. Fixing the mistreatment or non-treatment of ME patients will happen through more scientific research, not less, and I do not think that we've reached a point where we can rule out all CMRC proposed research as being BPS woo. Others may differ.

 

[BurnA]

If the CMRC gets new people working in the field or more funding I think that will go further towards moving the accepted view away from ME being psychosomaticism despite the involvement of a couple of BPS proponents (whom I guess are tying their sails to this mast because they sense the science is moving away from them). I remain unconvinced that a patient group boycott would suddenly lead to the BPS crew making a public confession that their model is bunk. But to scientists who are only casual observers of the debate around ME but who are considering moving into the field it may feed into the unfair stereotype that this is an area of research to avoid.

A few points.

The CMRC are not looking for new people - read Keith Geraghtys account of trying to join if you are in any doubt.

If they wanted to they would have sponsored PhD students like what iime are doing.

Of course a patient boycott won't lead to the BPS crew admitting anything, they will be married to their false illness beliefs for the rest of their lives. It's not about them changing, it's about pointing out that nobody else gives an ounce of respect for their work. If the patient charities leave the CMRC this will be obvious to all.They need the patient charities because without them they have no credence.

The casual observer scientist considering joining ME research is a fairytale dreamt up by the BPS.
Please, there is no such thing, the only way scientists join is if you pay them enough to do the research which is what iime are doing, otherwise forget it. One way to deter scientists is to portray the disease as psychosocial which is what the CMRC are accepting.

Please think about the situation and don't accept what the BPS / CMRC want you to believe, just so they can pursue their agenda, the same agenda they have always persued.

 

[Deepwater]

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.

Me too. I was a member and have left again - for the second time. They seem capable of learning nothing from experience.

 

[NelliePledge]

Is there any evidence that MEGA will actually get any funding - they haven't so far and all is quiet after the flurry around the launch and failed initial bid. Meanwhile Dr Davis and all the people who presented at IiME are working away and making progress. MEGA appears to be way behind the curve. Surely this is only a holding position by MEA to stay around just in case any funding materialises to give them a chance to exert the influence they believe they can have. Presumably they will get out if money does come through but their views aren't seriously taken on board. But im starting to feel like they are trapped in an abusive relationship thinking they can change the abusers behaviour by staying with them.

 

[trishrhymes]

I think MEGA are applying to the Medical research council (MRC), having failed with Wellcome. Given what is said in the MEA statement it seems likely they will get funding from there, and swallow up all ME government research funding for the next decade if they do for the massive biobank and questionnaire database they are planning under Crawley's leadership, and with no promise of actually getting around to doing any biomedical research until that massive sample is collected, nor of including any severe sufferers.

Sorry, I had promised myself not to go on about MEGA any more.

Has anyone looked closely at the topics for the talks at the upcoming CMRC conference. As far as I can see few if any of them are actually about biomedical research into causes of treatment of ME. Unlike the recent IiME conference.

 

[arewenearlythereyet]

I have a very bad feeling about this

 

[Valentijn]

They got PDW to resign from MEGA following a heated debate…

One less psychobabbler doesn't help, when psychobabblers continue to dominate the CMRC. And PDW retired from his university at the same time, so I doubt it had anything to do with MEA.

I just think the cure for that, the thing that will debunk it, is more research.

CMRC is not funding the research which will debunk psychobabble. They're supporting Esther Crawley in obtaining funding, who has long been a leader of psychobabble research.

If the CMRC gets new people working in the field or more funding I think that will go further towards moving the accepted view away from ME being psychosomaticism despite the involvement of a couple of BPS proponents (whom I guess are tying their sails to this mast because they sense the science is moving away from them).

They're rejecting researchers who don't favor psychobabble, so the only researchers they're likely to attract are more psychobabblers. We have absolutely no need for them, and they do us a lot of harm.

I remain unconvinced that a patient group boycott would suddenly lead to the BPS crew making a public confession that their model is bunk.

So? The point is to stop supporting the model which is actively harming us, not to force a confession.

But to scientists who are only casual observers of the debate around ME but who are considering moving into the field it may feed into the unfair stereotype that this is an area of research to avoid.

This has not been the case, whatsoever. Biological ME research is flourishing like it never has before. And the biomedical researchers are often stepping up to the plate to condemn the psychobabble, the lack of transparency, and the hate speech toward patients, which is often perpetrated by the people involved in and funded by the CMRC.

Fixing the mistreatment or non-treatment of ME patients will happen through more scientific research, not less, and I do not think that we've reached a point where we can rule out all CMRC proposed research as being BPS woo.

The CMRC is not involved in scientific research. They primarily support the perpetuation of psychosocial propaganda which uses poor methodology and spinning of the results.

Patients need an MCRC (it's ME/CFS, not CFS/ME) without the psychobabble. Something with standards when it comes to research, and a real commitment to putting patients first.

I think patients also need a robust charity which does the same. MEA is unfortunately too conservative when it comes to deference to authorities.

 

[Solstice]

This has not been the case, whatsoever. Biological ME research is flourishing like it never has before. And the biomedical researchers are often stepping up to the plate to condemn the psychobabble, the lack of transparency, and the hate speech toward patients, which in often perpetrated by the people involved in and funded by the CMRC.

This was the point I was gonna make. There is a lot of biological ME research worldwide and even in the UK there is good biological happening or about to happen. The common denominator in all of it is the CMRC isn't involved in any of it.

 

[Deepwater]

This was the point I was gonna make. There is a lot of biological ME research worldwide and even in the UK there is good biological happening or about to happen. The common denominator in all of it is the CMRC isn't involved in any of it.

I actually don't have a good feeling about some of the biological research. All the UK researchers who are cooperating with the authorities in order to obtain funding are, I suspect, now controlled, and their work will be steered in such a way as to neutralise any threat to the BPS model. It is all too easy to design biological research to obtain negative or near-negative results.

 

[Cinders66]

Holgate and Crawley going to town in the media on PACE 2 eg FITNET, touting high success for CBT before the trial had even begun was very damaging. Regardless of the benefit of good management wrapped up as CBT in the early stages, They should have been aware of the effects of their media in a climate where ME is not seen as a serious physical illness and any good the CMRC conferences might do in informing and inspiring regarding biomedical research was countered by the same old CBT for CFS narrative being reinforced on a massive scale.

I don't think the CMRC is effective at moving the field forward. And remember the CMRC is a follow on to the ME expert group begun in 2007, sImilar people , Similar way of working (minus the new conference) so they have had 10 years at it. I am severely ill and have watched this over years and there is not the urgency or seriousness reflected in what they do and achieve. I also think AFME and MEA have failed in getting ME - not Oxford CFS - researched and recognised and severe ME regarded an area of desperate need.

I'm also tired of the MEA defending the MRC. Position of not ring fencing anymore money for the illness as a way to stimulate the field. USA Norway and Australia are now I think doing this

 

[charles shepherd]

I normally try to respond to comments, queries and concerns relating to the MEA on social media (including PR forum) morning, noon and evening seven days a week

But it has been a very busy week, including two full days of medical and research meetings in London

So I'm going to take most of the wekend off for a change

I will respond to social media discussions on MEA membership of the CMRC on Monday

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Jo Best]

In the wide real world outside of the big tent for small minds, we can follow the adventures of a brave and very busy bear that refused to be duped by the naughty CMRC clowns into becoming a mere performing circus act. He set up his own instagram account on International Invest in ME Conference Day and is also on Twitter.

 

[Esther12]

I remain unconvinced that a patient group boycott would suddenly lead to the BPS crew making a public confession that their model is bunk.

No it won't, but medical research is changing in ways that mean researchers are increasingly expected to engage with patients, and show patients support their work. Without the support of patient groups the ammount of funding Crawley could attract would dramatically decline. It is patient groups who are empowering her to go on promoting quackery, smearing critics as anti-science, and encouraging the bigoted notion that patients do not respect her work just because they're opposed to psychological approaches, or do not understand how mind and body interact.

If we really want to move research forward and, just as important, bring about real changes to the unpleasent way patients are still being treated within the NHS, we need to stand up to those like Crawley. Playing along with researchers like her in exchange for a few scraps of possibly useful research is a terrible long-term plan.

Patients have more power to improve research now than ever before, and combined with the debunking of PACE we've seen from Tuller and others, we should be able to take advantage of that to really raise standards and make it clear that the old prejudices are not acceptable any more.

 

[Sean]

Without the support of patient groups the amount of funding Crawley could attract would dramatically decline. It is patient groups who are empowering her

Very important point.

They should have been aware of the effects of their media in a climate where ME is not seen as a serious physical illness

They are well aware of the effect their words and misdirection have. That is why they do it. It is how they have succeeded in dominating the field for decades and shutting out any competition, not to mention reality.

 

[Countrygirl]

Holgate and Crawley going to town in the media on PACE 2 eg FITNET, touting high success for CBT before the trial had even begun was very damaging.

I do wonder if 'Bath' is experiencing problems with recruiting participants for their Fitnet trial. One parent with whom I am in touch says that, after declining the proposal by EC to take part in the trial, EC rang her house every 30 minutes repeatedly for one morning very recently in order to apply pressure to change Mum's mind. The child answered each time I understand, hence the repeated calls. Mum was very annoyed with the pestering.

Now who is it that is accusing David Tuller of harassment?

 

[Demepivo]

Something for the MEA & AfME to sit on during CMRC meetings..