AfME: Discussions with CFS Research Foundation

[Chickadee9]

There was discussion on ME and CFS groups about CFSRF getting into bed with Peter White when they announced this project. Some patients who had supported the CRSRF contacted them at the time and stopped making donations to them.

The most likely place it was discussed in the forum was under the PACE discussions.

I've had dealing with AFME since it started and have no confidence in it or the trustees, given my personal experience. The rot is there at the top. Unless all the old trustees are voted out and replaced by people with a genuine belief in ME as medical illness without all the psychobabble then they will never change.

But CFSRF raised £230,000, which is an amazing amount of money, from its donors so if people opted out there were plenty who stayed in to support this project. Difficult to see why given the White connection.

If the trustees of AfME are in favour of psychobabble why is the organisation spending so much time funding and promoting biomedical research?

 

[peggy-sue]

I was unaware that the original project had involved PW.
That was what I was concerned about.
Thank you for clarifying

Having ME, reading long screeds of official script is very difficult, @Chickadee9

as is hanging onto the information in my memory between one phrase and the next, far less comparing it with anything from somewhere else.

 

[ukxmrv]

AFME is not "spending so much time funding and promoting" biomedical research.

They only just in the last year or two even started talking about or funding research. This is entirely new for them. It''s just a start. They have yet to fund a single project that would test a drug or a therapy for ME. The only similar research that they actively supported was PACE.

AFME has been going since 1989 and what did they fund or support or been involved in from 1989 until just recently?? - BACME, PACE.

Alaister Miller is still their principal medical officer. Unless they get rid of the old guard who put him in place and get in someone with an actual interest in biomedical research and get rid of the Trustees who supported PACE then they will never change.

Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:

"Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME.

 

[Esther12]

Those of you who actually bothered to read the statement would have noted that 1. This project was initiated by the CFSRF last year when there was no connection with AfME. Their donors gave freely to it and that is the money that is in the pot. I don't remember any fuss about them getting into bed with Peter White at the time when it was announced. 2. Presumably in an ideal world AfME would have preferred to take over the cash and not the project. But the fact is the project has started already and that's the deal that's on offer. The point was made several times that the new contract that is currently being negotiated will have more stringent conditions than the old one.

I saw quite a few complaints about White's involvement when it was first announced. Was it announced at the start of fund raising? I'd not heard of the CFSRF prior to seeing the complaints about White's involvement.

Also, it's not like AfME's announcement included the criticisms of White and his misrepresentations that any legitimate patient group should make. Instead it just made vague allusions to some patients being unhappy, and talked of building bridges with researchers in exactly the sort of way that would play into the bigotry of those who believe CFS researchers are only criticised unfairly by patients.

 

[user9876]

Those of you who actually bothered to read the statement would have noted that 1. This project was initiated by the CFSRF last year when there was no connection with AfME. Their donors gave freely to it and that is the money that is in the pot. I don't remember any fuss about them getting into bed with Peter White at the time when it was announced. 2. Presumably in an ideal world AfME would have preferred to take over the cash and not the project. But the fact is the project has started already and that's the deal that's on offer. The point was made several times that the new contract that is currently being negotiated will have more stringent conditions than the old one.

The question is can action for ME properly manage the research contract. I think this is actually quite a challenging task.

White was the PI for PACE and look at the way it was run which I think means no one can trust the results. The protocol was rewritten after the close of the trial, they say prior to examining the data, but it wasn't a blinded trial so they would have been able to make a guess at the results. Even then they have failed to publish everything in the statistical analysis plan but instead they have published completely idiotic recovery criteria with recovery thresholds lower than trial entry criteria. They did this with the approval of the trial committee but we aren't allowed to know what information they presented to convince them that this was acceptable - in part because one charity wrote a letter to the FoI court saying they wouldn't be able to take part if trial committee meetings minutes were published. That was a recent action not a historical one.

AfME have not tried to help hold White accountable for the lack of transparency of the PACE results or how they were spun. I'm not convinced they have people with the necessary skills to run a research contract and ensure that the data is adequately published especially given White's record on PACE.

 

[Chickadee9]

The question is can action for ME properly manage the research contract. I think this is actually quite a challenging task.

White was the PI for PACE and look at the way it was run which I think means no one can trust the results. The protocol was rewritten after the close of the trial, they say prior to examining the data, but it wasn't a blinded trial so they would have been able to make a guess at the results. Even then they have failed to publish everything in the statistical analysis plan but instead they have published completely idiotic recovery criteria with recovery thresholds lower than trial entry criteria. They did this with the approval of the trial committee but we aren't allowed to know what information they presented to convince them that this was acceptable - in part because one charity wrote a letter to the FoI court saying they wouldn't be able to take part if trial committee meetings minutes were published. That was a recent action not a historical one.


AfME have not tried to help hold White accountable for the lack of transparency of the PACE results or how they were spun. I'm not convinced they have people with the necessary skills to run a research contract and ensure that the data is adequately published especially given White's record on PACE.

You make a good point. Lessons need to be learnt from the way White ran PACE. The statement makes it clear that he will be challenged on this one and not get it all his own way. Let's see what happens to the negotiations.

 

[Min]

There was discussion on ME and CFS groups about CFSRF getting into bed with Peter White when they announced this project. Some patients who had supported the CRSRF contacted them at the time and stopped making donations to them.

The most likely place it was discussed in the forum was under the PACE discussions.

I've had dealing with AFME since it started and have no confidence in it or the trustees, given my personal experience. The rot is there at the top. Unless all the old trustees are voted out and replaced by people with a genuine belief in ME as medical illness without all the psychobabble then they will never change.

They cannot be voted out as they are the only full members, and only they have voting rights. They appoint themselves. Everyone else is an associate member. The whole situation is nestly stitched up.

 

[Wildcat]

.
AFME Members can vote for trustees now. BUT they can only vote for candidates that have been pre vetted and pre selected by AFME. All members have the right to stand to be voted for in order to become new trustees. But AFME preselect certain candidates and exclude all the rest. So AFME still control who and who can become a trustee, but now afme does it with an appearance of democracy (of course it isn't anything of the kind).

.
Sorry thats not explained very well.

 

[peggy-sue]

@ukxmrv you said;
"AFME has been going since 1989 and what did they fund or support or been involved in from 1989 until just recently?? - BACME, PACE."

AFME also had a hand in "rewriting" the Scottish Good Practice Guidelines,

changing them from:-

recommending the use of the Canadian Criteria (the guidelines were written before the ICC came out) to diagnose ME and the use of the NICE guidelines to diagnose CFS

to the very vague and wooly "the gp can choose which set of criteria to use" but urging the use of NICE,CBT and GET.

and holding up publication for over a year in order to do so.

 

[Graham]

There have been changes at AfME, and a number of individuals have responded to our concerns. But it is a big organisation, and it will be difficult to make changes. All I am suggesting is that we don't condemn them before they have a chance to prove themselves on this. Why waste our limited energies just speculating? Getting angry or frustrated is so utterly draining.

By all means criticise what they have done, but as no-one can do anything to halt this study, why not hope that they could ensure that the report produced will be scientific and transparent?

 

[Min]

@ukxmrv you said;
"AFME has been going since 1989 and what did they fund or support or been involved in from 1989 until just recently?? - BACME, PACE."

AFME also had a hand in "rewriting" the Scottish Good Practice Guidelines,
changing them from:-

recommending the use of the Canadian Criteria (the guidelines were written before the ICC came out) to diagnose ME and the use of the NICE guidelines to diagnose CFS

to the very vague and wooly "the gp can choose which set of criteria to use" but urging the use of NICE,CBT and GET.

and holding up public4ation for over a year in order to do so.

That is despicable.

AfME also recommended during the PACE trial that the only objective measurement of results be abandoned.

 

[peggy-sue]

I'm still waiting for them to undo what they did to the Scottish Good Practice Guidelines.

(which was to make them compatible with NICE.)

Had those been published, they would have been a leading light in the world for the recognition of ME as a seperate entity from CFS.

I'm furious.

 

[Wildcat]

.
.
.Its not patients who have condemend AFME. AFME (long term trustees and increasingly transient staff) has condemned itself as a charity consistently by its actions and inactions.

We can't survive on 'hope'. And who exactly at AFME will ensure the report will be scientific and transparent?
AFME's medical advisor Dr Alastair Miller?

AFME most definitely has not, right up till now, ensured that PACE was "scientific and transparent".


There's still time - so lets hear some robust critique of the PACE Trial/CBT/GET/SMILE etc from AFME..... before we place trust in that charity's intentions or ability to ensure anything.

That charity's actions regarding the Scottish Good Practice Guidelines spelled out AFME's stance loud and clear.
.
.

There seems to be a drift from seeing 'the problem' as being AFME and its actions/inactions and unaccountability -
to portraying 'the problem' as patients objecting to afme's actions/inactions/unaccountability.

.
.

 

[peggy-sue]

This is a pdf of the original Scottish Good Practice Guidelines, which should have been published in 2009.

 

[peggy-sue]

This is what got published in 2010.

 

[Ambrosia_angel]

Can someone give me a summery of the differences? I can't open the files.

 

[peggy-sue]

I get a thing asking me if I want to open it in adobe when I click on the links.

It does come up in a new window for me when I do that. Then it comes up with a thing which says it can't read it, but it can. Just ignore it. It's probably to do with the older computer systems they were written in.

I can't copy and paste any sections of text though. If I try, I get computery gobbledygook I don't understand.
(I can't use clipboards).

 

[golden]

I'm still waiting for them to undo what they did to the Scottish Good Practice Guidelines.

(which was to make them compatible with NICE.)

Had those been published, they would have been a leading light in the world for the recognition of ME as a seperate entity from CFS.

I'm furious.

Do you think things will change when Scotland goes Independent?

 

[peggy-sue]

I hope so!
I hope so much, it hurts.

 

[golden]