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Trial By Error, Continued: ME Research UK Drops Out of CMRC

He also covers AfME's recent statement, saying in part
But the statement falls short in rejecting the call to sign onto an open letter to Psychological Medicine, which was posted on Virology Blog in March. The open letter requested retraction of the reported recovery findings and was signed by more than 140 scientists, academics and other experts, as well as ME/CFS organizations. The open letter’s retraction request was based on the reanalysis of the recovery data, which documented how the PACE investigators weakened their recovery criteria in ways that jacked up their reported results. Although Action for ME was not informed of the open letter before it was originally posted, it was asked to add its name afterward. The organization declined.

In last week’s statement, Action for ME explained that decision by noting that Psychological Medicine had already refused the retraction request. “Therefore signing now will have no impact,” the statement noted. This is fallacious reasoning. I doubt many of us who signed the open letter believed it would magically result in retraction—certainly I had no such delusion. The decision-makers at journals like Psychological Medicine and The Lancet have long shown themselves to be impervious to arguments based on logic, common sense and scientific integrity.
 
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No-one could be that misinformed. They have fingers in all the high profile stuff. They know exactly what they are doing.

They play dumb really convincingly. Is it possible that they have fingers in so much high-profile stuff because everyone with power knows they can be used as useful idiots?
 

Yogi

Senior Member
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1,132
They play dumb really convincingly. Is it possible that they have fingers in so much high-profile stuff because everyone with power knows they can be used as useful idiots?

They are not dumb I can assure you. They have over £1m income each year. They are the best financially funded charity. If they were incompetent then they would not be the APPG secretariat would they and be involved in all the high profile stuff.

It is a well know strategy of using charities as fronts for corporate/financial interests:

http://forums.phoenixrising.me/inde...ded-by-action-for-me.44622/page-3#post-726339

Seriously stop giving AFME any benefit of the doubt. AME are BPS/MUS/PACE.
 

user9876

Senior Member
Messages
4,556
They are not dumb I can assure you. They have over £1m income each year. They are the best financially funded charity. If they were incompetent then they would not be the APPG secretariat would they and be involved in all the high profile stuff.

They are good at fund raising but they don't seem to have a grasp of the science - judging from their less than coherent statements.
 

Yogi

Senior Member
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1,132
They are good at fund raising but they don't seem to have a grasp of the science - judging from their less than coherent statements.
They do have grasp of the science. They don't have pwME's interest in mind - that is the issue. They understand the science fully well just like the PACE authors and have their interests and the insurers in mind instead.
 

Yogi

Senior Member
Messages
1,132
Comment



Olivia Beattyan hour ago
My family have withdrawn support from Action for ME, we sent a letter with our concerns. Less money for them. Our fundraising will go to Invest in ME. I think the trustees statement was wrong to say that the focus on PACE was hindering scientific research. It is the EXISTENCE of PACE that blocks more doctors becoming interested in research.Plus all those NHS clinics are wasting money.

This is the only way to go. I feel sorry for people giving money to AFME.
 
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Seriously stop giving AFME any benefit of the doubt. AME are BPS/MUS/PACE.

I'm not giving them the benefit of the doubt. I think they're terrible, I just don't know exactly what it is that leads to them being terrible. If they had a really good understanding of this stuff, but were trying to act as propagandists for PACE, Crawley etc, then imo they should be able to do a better job of it. They seem to be rubbish, whatever it is that they're trying to do.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
The timing of MERUK pulling out seemed more closely linked to the day with the MUPPETS. Although thinking about it a charity would struggle to make a decision that quickly.
 

Yogi

Senior Member
Messages
1,132
I'm not giving them the benefit of the doubt. I think they're terrible, I just don't know exactly what it is that leads to them being terrible. If they had a really good understanding of this stuff, but were trying to act as propagandists for PACE, Crawley etc, then imo they should be able to do a better job of it. They seem to be rubbish, whatever it is that they're trying to do.

They are doing a great job for themselves. They are the most high profile charity and got lots of cash. Sowing doubt and misinformation in pwME as can be seen. AFME are double dealing and doing very well from it. They work on behalf of the PACE/MUS/BPSers and also get fools to part with their money and donate to AFME at the same time.

It is called a Win Win situation (for AFME)!
 
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