trishrhymes
Senior Member
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I think it may be difficult for AfME to extricate itself from CMRC.
“While the difficult takes time, the impossible just takes a little longer.”
― Art E. Berg, The Impossible Just Takes a Little Longer
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I think it may be difficult for AfME to extricate itself from CMRC.
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 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!!!
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/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 this isn't a textbook case of gross fraud, I don't what is.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 is a textbook case of gross fraud, I don't what is.
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 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 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.
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.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.
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.
In a subgroup of ME/CFS patients, prolonged B-cell depletion with rituximab maintenance infusions was associated with sustained clinical responses.
This is a systematic failure to engage with science, and to understand the science.
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?
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.
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.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.