How would that be any different to what we have now?What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
How would that be any different to what we have now?What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
Hence why I said "then better it disbands". But whatever the new organisation, it would have to be good enough and promising enough to tempt the really genuine/decent researchers away, and leave the rest to stew in their own juice and just decompose or something. And hopefully funders would begin to see sense. But then, I always was a bit of a dreamer!What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
Well done MERUK!
They show courage, integrity and a commitment to good quality science.
There are two others, of course, whom we need to hear from......................... Will they make a stand against poor science and those who sell patients down the river for the sake of their own personal empire? One won't, one might
I agree. Action for ME won't leave, they haven't changed so until the situation becomes completely ridiculously untenable they will remain. They'll probably leave at the point where it is clear it is disbanding anyway, try and claim they are doing the right thing at that point but basically when it makes no actual difference anyway.
MEA may leave...but I think it is difficult for some to admit on a personal level that they were wrong and those who have been telling them so for years were right from the start. MEA joined for all the right reasons and have all the best intentions, I am a fan of a lot that they do, but joining the CMRC was an error in judgement. I don't think anyone is interested in saying I told you so though, people just want them out and collaborating instead with people of the right caliber and attitude. I am sure it will happen eventually. The sooner the better.
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/
Its as though the Age of Reason is a myth. We are still steeped in magical thinking.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?
Even though patients say they are "completely recovered" in a trial I would expect her to take precautionary measures; she sould say that this was based on subjective measures. She should say that patients with ME may feel better for a certain period of time, but that they can deteriorate quickly. Studies have also shown that patients rate themselves as better, while pedometer/actimeters show no difference. Crawley has been involved with ME for a very long time. I don't believe that she doesn't know this. I am sorry, but there are no excuse on how she speaks of CBT recovery.
I think Crawley's a quack, and she's made even more extremely misleading claims on PACE's recovery rates than White, but FITNET can be a more complicated one. She should let people know that there was no difference between groups are LTFU and the other problems with the trial, but it's pretty normal for people to gloss over things like this. I think that many of these people have behaved so badly that it's well worth focussing attention of the clearest problems with their work and not risk making criticisms that could seem unfair for other things that they do.
Large Donner said: ↑
What if the rotten bits just carry on with the SMC firmly inside it and bring in more charlatons under Holgate?
How would that be any different to what we have now?
I agree. To make this abundantly clear, why don't we make a a list of false statements? In that way it would be easy for outsiders to call her bluffs. We can also add other PACE people to the list.
This evening I sent another e-mail to Dr. Holgate and the CMRC executive board:
Dear Stephen--
You recently informed me that Dr. Crawley had the "full support" of the CMRC executive board. However, now that ME Research UK has pulled out of the collaborative, effective immediately, it seems fair to assume that the support for Dr. Crawley was in fact less than "full."
Do you have any comment to make about ME Research UK's decision? Given that your claim of "full support" for Dr. Crawley turns out to have been inaccurate, can you explain why you used that phrase? Did you actually canvass the entire board to ensure that every single member supported Dr. Crawley?
If not, why did you decide to make that claim?
Look forward to hearing from you.
Best--David
David Tuller, DrPH
School of Public Health
Graduate School of Journalism\
University of California, Berkeley
Like
Comment
S
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.
Who/what advises the U.K. Government on CFS/ME?
The UK government does not take advice on ME as far as I know. Health is a matter not for the government any more but for the National Health Service, which is now considered by the government to be responsible for its own decisions - so that it can be criticised by the government for getting them wrong. There is no longer any central health policy of the sort we had with the Central Public Health Laboratory Service for infectious disease or even regional health authorities. Everything is a free for all.
The National Institute for Clinical Excellence decides on treatment policies available on the NHS but again is nothing much to do with government. It recruits 'experts' according to the usual sort of network but mostly takes evidence from drug companies. There is probably an unusual conflict of interest for ME in that the people giving evidence about treatments like CBT are the same people as the 'experts' critiquing the evidence.
As far as I am aware the CMRC had and has absolutely no influence on any of this, though some of the people involved in the CMRC may have.
If you think that they deserve thanks then a small (or large) donation could be the way to show them
As you don't think they deserve thanks that absolutely makes sense for you.I don't think we've had an apology yet have we? I for one will use my money differently.