ME Research UK withdraw from UK CFS/ME Research Collaborative

Esther12

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The real problem is that they shouldn't have acted this way in the first place. Very many patients and advocates knew how this would end. How is it a mainstream UK ME Charity didn't possess equivalent prescience? I'm glad they have now seen sense, but I am angered that they thought they knew best when getting into bed with the BPS school. I don't easily forgive. I was a staunch supporter of MERUK and they let people with ME down very badly imo. Ditto the MEA. They didn't listen to the patient base. I'm sorry but I'm not the type to bend over fawningly because someone has removed themselves from a situation they should have known was bad right at the very beginning. Now they need to earn redemption .. it would help if they added to their statement. It's weak and shows little insight.
I was wary, but I did still support the CMRC. I misguidedly thought that it could be an attempt to let the biopsychosocial lot quietly fade away, without it being too humiliating for them. Frankly, I was naïve about the politics around UK research into ME/CFS, and about the extent to which those like Holgate were concerned by the impact junk science like PACE was having on patients. Holgate said a lot of appealing things that a lot of patients wanted to believe, and some of us underestimated the downsides of an organisation like the CMRC.

Looking back, I expected PACE to by a laughing stock about 6 weeks after we pointed out some of the basic problems with it and the way results were presented. I would not have believed someone who told me how much time and effort it would take, or that even at this point we'd still have most authority figures refusing to acknowledge the problems with it, or engage in any sort of debate about it.
 
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slysaint

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The MEA should pull out now.
Then it will be just AfME left to pick which side of the fence to be on.

eta: on twitter
qua sar‏@quasar9uk 36m36 minutes ago


Replying to @MEResearchUK @MEAssociation @scotjess3
absolutely - we are all a million % behind you. action4ME is a front for shrinks, like the bloody science media centre - ME'ers been scammed

0 replies 0 retweets 0 likes
 
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deleder2k

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I was one of the people who was opposed to any of our ME organisations entering in this fiasco with the CMRC in the first place, the writing was so clearly on the wall. Yet even people at the helm of our ME organisations accused people like me of "just not wanting to see British science involved in ME", which was a totally bizarre thing to say.

There was a number of threads on this forum and others I think pointing out the names of all the people involved in the CRMC it was so bleeding obvious what was going to happen.

I do want to hear what people think would happen now, lets say if all the ME organisations did resign. Do people think the CMRC would just carry on regardless with Crawley at the helm and would she just love it even more having total free reign doling out more and more crap via the SMC who are also neatly placed in the CMRC.

I really think that a total walk out by our organisations should go the whole hog and call for the disbandment of the CMRC, and explain in full detail that they are not prepared to work with Crawley under any circumstances, why and to just show the simple provable facts in black and white. This should be done in a press conference and also statements should be posted online.

She is a quack and a danger to patients!!!
Thanks for writing this. I'm from Norway and I don't know the situation in detail, but it seems like a move that was fuelled by the PACE controversy.
I saw a presentation that she held on Youtube yesterday. It was from last autumn. She spoke about FITNET and said several times that 6/10 patients "fully recovered". That is a blatant lie. And she repeated it. She also didn't mention that there were no difference between intervention group and placebo group in a follow-up study.

She may believe in CBT/GET. She can do what she want, but lying and harassing other researchers like Tuller is way over the line.

From my understanding there was no other option here. Thanks to ME Research UK.
 

AndyPR

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Guiding the lifeboats to safer waters.
I said this in another thread about donating to ME Research.
An awesome idea, wish I'd thought of it earlier.

When you donate, you can add a message to the charity, so I thanked them for leaving the CMRC and encouraged them to continue with the biomedical research.
If you think that they deserve thanks then a small (or large) donation could be the way to show them http://www.meresearch.org.uk/
 

Demepivo

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@AndyPR Various people I know had stopped their direct debits to MERUK, which may have had an impact on their decision.

Last year I did do some fundraising for them & they made me feel appreciated.

The science writing they do on their website is good quality and they do report back on the projects they fund.

They also have a board comprised of scientists, where as the AfME board is just people Sonya Chowdhury gets on with & who have a shockingly bad knowledge of what is going on in the research field.
 
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Sean

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I saw a presentation that she held on Youtube yesterday. It was from last autumn. She spoke about FITNET and said several times that 6/10 patients "fully recovered". That is a blatant lie. And she repeated it. She also didn't mention that there were no difference between intervention group and placebo group in a follow-up study.
If this isn't a textbook case of gross fraud, I don't what is.

EDIT: If this isn't...
 
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Esther12

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If this is a textbook case of gross fraud, I don't what is.
FITNET was the one with a genuinely high rate of self-reported recovery at first, but no difference at LTFU, right? That study generally seemed like a bit of a mess, with lots of the control group having had in person CBT/GET, but there's quite a bit of leeway for making claims about recovery with it before counting as 'fraud' imo.
 

rosamary

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Crawley needs to be shunned. I don't see how any ME organisation can work with her. She doesn't even know what ME is, and her behaviour towards patients is an absolute scandal. Other members of the medical profession need to understand this sort of behaviour is not acceptable and that the UK's patient population has no faith in her whatsoever.

I'm saying this because if the CMRC closes and she still turns up in a patient or research organisation, we're no further on. Crawley and her cronies have to go.
I think she DOES know what ME is but she doesn't want it to be separated from chronic fatigue. She has managed to build her own empire by stealing money which should have gone to research into ME.

A lot of the research she does is rather pathetic and doesn't actually help anyone really...if they have ME.

Am sure she is lovely to the children and their parents and also able to screen out children with other diseases.

However, once there is no 'explanation' for their symptoms they become suitable guinea pigs for gung-ho research/therapy.

I am VERY disappointed in Stephen Holgate. He told us once to give him a 'good kicking' if he didn't succeed in improving research provision in two years.

His biggest mistake is EC.
 

JaimeS

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I do want to hear what people think would happen now, lets say if all the ME organisations did resign. Do people think the CMRC would just carry on regardless with Crawley at the helm and would she just love it even more having total free reign doling out more and more crap via the SMC who are also neatly placed in the CMRC.
I think for awhile that was the organizations' worry. However, it's silly to worry about keeping your hat in the ring when the ring is on fire. If you'll allow me such a mixed metaphor.

I would not have believed someone who told me how much time and effort it would take, or that even at this point we'd still have most authority figures refusing to acknowledge the problems with it, or engage in any sort of debate about it.
This is the part with which I most struggle: how on earth can a study with such obvious flaws have been met with such unfailing, chipper enthusiasm? Ugh.
 

alex3619

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This is the part with which I most struggle: how on earth can a study with such obvious flaws have been met with such unfailing, chipper enthusiasm? Ugh.
As I and others have said before, this is an example of a pervasive failure within the medical profession. While individual doctors have many mitigating circumstances, including lack of time and poor information and educational resources, the profession does not. The entire profession needs a shake up. This is a systematic failure to engage with science, and to understand the science. There is no excuse.
 

deleder2k

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FITNET was the one with a genuinely high rate of self-reported recovery at first, but no difference at LTFU, right? That study generally seemed like a bit of a mess, with lots of the control group having had in person CBT/GET, but there's quite a bit of leeway for making claims about recovery with it before counting as 'fraud' imo.
I'm not sure what the definition of fraud is, but she said several times that 6/10 completely recovered. When you repeat that multiple times everyone that goes out of that room believes that 6/10 of all patients became 100% healthy. She knows that that is not the case. She knows better. She is a f*** researcher. I don't only expect a higher level of precision, I demand it. It is unheard of to go on like she does. How can anyone take her seriously?

Compare it to what Fluge and Mella reported after their rituximab study. Their results have much better than any CBT/GET trial. They said that this "could work for some" and that rituximab had a significant effect.


In a subgroup of ME/CFS patients, prolonged B-cell depletion with rituximab maintenance infusions was associated with sustained clinical responses.
How can we take ms. Crawley seriously when she doesn't present studies with a degree of precision? It is almost as I don't believe it is true. She is standing up there and saying that 6/10 completely recovered. I don't know what defines a lie in the U.K, but in Norway a lie is a lie when you knowingly makes an claim that is incorrect.

I would hope that Crawley doesn't actually believe that all patients who were labelled as recovered did actually recover so that their health returned to pre disease functioning. It is time to stand up. Enough of this BS already
 
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JaimeS

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This is a systematic failure to engage with science, and to understand the science.
Strikes me as they believe they don't need to know it, having accepted that the psyche actually controls everything. What's the point of we small thinkers, who insist on understanding chemistry and physics, when it's all at the mercy of the mind?
 

Esther12

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I'm not sure what the definition of fraud is, but she said several times that 6/10 completely recovered. When you repeat that multiple times everyone that goes out of that room believes that 6/10 of all patients became 100% healthy. She knows that that is not the case. She knows better. She is a f*** researcher. I don't only expect a higher precision level, I demand it. It is unheard of to go on like she does. How can anyone take her seriously?
Didn't FITNET use self-rating of being 'fully recovered' for their recovery outcome? There are odd things about FITNET, and no difference between groups at LTFU, but it's a more complicated case than PACE.

edit: The no difference between groups at LTFU meant that I never got around to looking closely t FITNET. I thought Tuller's post on this made a lot of good points though: http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/
 

Wolfiness

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I do want to hear what people think would happen now, lets say if all the ME organisations did resign. Do people think the CMRC would just carry on regardless with Crawley at the helm and would she just love it even more having total free reign doling out more and more crap via the SMC who are also neatly placed in the CMRC.
It really depends on whether they give a toss that most of their informed patients don't trust them or whether they are only interested in exploiting us to further their own careers like some Tuskegee atrocity.
 
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Barry53

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Once everyone is out of the CMRC tent there will be a new impetus for a venue for collaboration elsewhere
Interesting thought. If the old organisation is rotten beyond repair, then better it disbands, and something new and much better is created instead. Just need to be sure the rotten bits of the old setup get nowhere near the new one ... not quite sure how that could be ensured. And stays independent from the SMC.
 

Large Donner

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Interesting thought. If the old organisation is rotten beyond repair, then better it disbands, and something new and much better is created instead. Just need to be sure the rotten bits of the old setup get nowhere near the new one ... not quite sure how that could be ensured. And stays independent from the SMC.
What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?