STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

[Wildcat]

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AFME's collusion with the PACE Trial is still having destructive repercussions.

By the way, in 2003/4, AFME promoted the PACE Trial to its members as "A Study on Pacing" but barely mentioned that PACE was substantially about CBT and GET. I have the 2004 copy of AFME's magazine 'Interaction' with the article by AFME CEO which enthused "Rah rah rah - we have a study on Pacing, Hooray Hooray".
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Only much later did the AFME members learn that PACE was designed and run by White Sharpe and Chalder and was substantially a CBT/GET study with AFME's version of pseudo pacing, dubbed 'APT' (the so called 'pacing' provided by AFME was a construction of pacing which was not recognisable to ME sufferers). Because AFME did not inform their members.

The published 'PACE Trial Identifier', and AFME's description of the forthcoming PACE Trial to its members in 2004, were not the same.

That is just one example of AFME saying one thing and doing another.
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[Min]

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AFME's collusion with the PACE Trial is still having destructive repercussions.

By the way, in 2003/4, AFME promoted the PACE Trial to its members as "A Study on Pacing" but barely mentioned that PACE was substantially about CBT and GET. I have the 2004 copy of AFME's magazine 'Interaction' with the article by AFME CEO which enthused "Rah rah rah - we have a study on Pacing, Hooray Hooray".
.
Only much later did the AFME members learn that PACE was designed and run by White Sharpe and Chalder and was substantially a CBT/GET study with AFME's version of pseudo pacing (the so called 'pacing' provided by AFME was a construction of pacing which was not recognisable to ME sufferers). Because AFME did not inform their members.

The published 'PACE Trial Identifier', and AFME's description of the forthcoming PACE Trial to its members in 2004, were not the same.

That is just one example of AFME saying one thing and doing another.
.

.

Here is Action for ME's statement, giving the false impression to their members that the wretched PACE trial was actually about pacing:

Collaboration with the PACE study

PACE RESEARCH STUDY – a statement July 2004



Various comments have been made by individuals and other organisations about our support for the PACE study. We are pleased to explain our position.



Action for M.E. has found from repeated surveys of its membership that Pacing has been the approach that people have found of most benefit in managing the illness and helping toward recovery.



The Chief Medical Officer’s Working Group listened to the Action for M.E. surveys and the contributions of the Group’s Members and for the first time acknowledged the usefulness of Pacing – along with other rehabilitation approaches used in the NHS.



But the Group acknowledged there was much that was still unknown about the effectiveness of all the approaches and recommended a research trial comparing them.



"Because of the shortage of good research evidence of the effectiveness of pacing, there is an urgent need for randomised controlled trials of pacing therapy, particularly in early illness (for example, in comparison with rehabilitation therapies such as cognitive behavioural therapy and/or graded exercise, and other forms of support such as counselling)."



The Report including this key finding was accepted by all the members of the M.E. Alliance



Subsequently Action for M.E. undertook further surveys that showed members do want research into and more information on Pacing.



Accordingly, and having checked that a study would not divert funds from our members overall priorities to find the cause and a cure for M.E., we agreed to support a trial comparing Pacing with other approaches.



It is not true – and never has been – that the funding of PACE has diverted money away from other M.E. research.



Chris Clark

What I have not been able to find out is how much Action for ME's staff were paid for their involvement in the PACE trial.

 

[Amused]

Extract:
The Chief Medical Officer’s Working Group listened to the Action for M.E. surveys and the contributions of the Group’s Members and for the first time acknowledged the usefulness of Pacing – along with other rehabilitation approaches used in the NHS.



But the Group acknowledged there was much that was still unknown about the effectiveness of all the approaches and recommended a research trial comparing them.



"Because of the shortage of good research evidence of the effectiveness of pacing, there is an urgent need for randomised controlled trials of pacing therapy, particularly in early illness (for example, in comparison with rehabilitation therapies such as cognitive behavioural therapy and/or graded exercise, and other forms of support such as counselling)."

Extract end
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but that's what PACE did, compared APT and CBT and GET and Specialised Medical Care. Doesn't seem particularly misleading to me?

Or is it that APT per PACE isn't the same as Pacing as 'normal' me/cfs people see it?

 

[alex3619]

APT is anti-pacing. It violates the basic rules of pacing as used in ME. No ME patient into pacing would use it. It is kind of defensible as "pacing" because anti-pacing is pacing, isn't it?

This may be a case of selecting a comparison group designed to make the main study approaches look better. Pharma has been known to do this too.

 

[shahida]

Here are some gems from AFME'S current pacing booklet:
:It’s not a good idea to cut out activity altogether because too much rest and too little activity can exacerbate the setback rather than improve matters’ AND
You are likely to notice a temporary increase in stiffness or fatigue when increasing your energy levels. This is normal and your body will need a few days to adjust and adapt’. s
how they can say this isn't influenced by the Psych school I don't know. If more members were aware of this they could put pressure on them- the newish CEO appears to want to be more transparent.