Action for ME has joined S4ME

Docsimsim said:
@TiredSam, Unfortunately ‘Within the S4ME rules’ caveat can also be used to turn the heat down/off on Afme.
Personally I think it makes no difference how many times/years we ask Afme about their actions as enablers of the policies of the BPS lobby amongst patients, we’ll not get a straight answer. If it’s not happened after all these years, it’s highly unlikely to happen now.

An organisation which has such a close symbiotic relationship with the government/vested interest lobby is by default unable to act in the best interest of its members who are the very people who have been systematically neglected and mistreated by these governmental institutions.

So yes from years of personal experience I don’t expect Afme to address any of these very fundamental issues but I none the less feel compelled to continue to raise them, to alert others about it.
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I don't see the heat being turned down anytime soon. Anyone that reads anything about afme will know how poor they have been for us. If anything them joining this forum and threads like these popping up has turned the heat on again. Aslong as there are intelligent people here to challenge them on all their shortcomings I can't see this backfiring. Well, not for us anyway.
 
From 2010
"
The charity Action for ME (AfME) has twice published data showing negative experiences with the Lightning Process (InterAction magazine, March 2007 and AfME’s Patient Survey data published in 2008, which record a worsening of symptoms following the Lightning Process “training” programme), yet AfME continues to support Dr Crawley’s trial:

”Action for ME sees no reason to oppose this study”

(published on AfME’s Facebook). As noted in “Magical Medicine”, AfME’s members might wish to consider why a charity that was formed to support people with ME should now work so closely with those who believe them to be mentally ill. "

http://www.investinme.org/Article-410 Memo to NICE.htm
 
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Sly Saint said:
"
The charity Action for ME (AfME) has twice published data showing negative experiences with the Lightning Process (InterAction magazine, March 2007 and AfME’s Patient Survey data published in 2008, which record a worsening of symptoms following the Lightning Process “training” programme), yet AfME continues to support Dr Crawley’s trial:

”Action for ME sees no reason to oppose this study”
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That quote is from 2010, @Sly Saint - eight years ago. I think your use of the present tense is a bit of a stretch! :)

What I'm interested in, and what this thread is about, is AfME's attitude to PACE right now, in 2018.

Edit: Apologies, @Sly Saint! I thought this was the other thread.

But my main point still stands - I think we have to careful about using statements from years ago to say anything about what AfME thinks now.
 
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Sasha said:
That quote is from 2010, @Sly Saint - eight years ago. I think your use of the present tense is a bit of a stretch! :)

What I'm interested in, and what this thread is about, is AfME's attitude to PACE right now, in 2018.

Edit: Apologies, @Sly Saint! I thought this was the other thread.

But my main point still stands - I think we have to careful about using statements from years ago to say anything about what AfME thinks now.
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It’s not old news, they continue to refuse to even criticise SMILE let alone anything more. MEA and Charles Shepherd did so clearly on radio 4 today, calling SMILE pseudo science. Yet afme were totally silent.
 
Jonathan Edwards said:
Dear Clare (@Action for M.E. ),
Thank you for engaging on this.

My original comment was made to agree with another that AfME has supported behavioural therapies in terms of trials, in the past at least, and that it has been hard to discern a shift of position. I was recently disappointed when AfME withdrew from involvement in the UK ME Biobank to focus on MEGA when at the time many figures involved in MEGA were vociferously supporting behavioural therapies in public. There is an ongoing hope that things will change, and there have been signs that they might, but people find it hard to read AfME's position.

The information pages on treatments look as if they have been recently updated and do look quite 'balanced'. My problem is that, as someone who got drawn in to the ME debate by chance, having been asked to advise on research quality, I think this 'balance' misses out some simple issues that would help patients see things more clearly.

The NICE account of CBT is deliberately misleading (on their part). CBT for ME is based on the 'BPS' idea that perpetuation of ME is due to illness beliefs and that patients have a 'choice' whether to be ill or not (Wade and Halligan BMJ 2004). The objective of ME CBT is to persuade the patient, using 'cognitive strategies', that they will be better if they get into a frame of mind of getting better. And it is the 'responsibility' of the patient to agree to being persuaded (all in Wessely, David, Butler, and Chalder 1989). And nobody actually knows if this story of illness belief is right! Shouldn't patients be aware of what the treatment really is?

In the context of open label studies the result of this coercive persuasion is that patients end up reporting that they feel they are getting better - it is self-fulfilling. Physiotherapists used to do trials like this in rheumatology thirty years ago and we realised that the results were just due to the patients saying what they were told to say. PACE would never have been published in a genuinely peer reviewed journal like the Annals of Rheumatic Diseases or Arthritis and Rheumatism. I find it bizarre that people are still claiming that you can draw any conclusions from the CBT and GET trials in ME. But I should not be surprised because muddled thinking is so widespread amongst doctors.

If AfME is a government mouthpiece then I can understand the sense that government based information, as from NICE, should be placed first. But if AfME is an independent advice service for patients that seems to me naïve. NICE has always had heavy political overlay, with evidence for expensive treatments like biological drugs produced by industry downplayed and evidence for cheap treatments provided by the NHS itself overrated.

I am not seeking to set up a debate here because it is only fair to let people at AfME follow their own judgments, and I respect that. But I do share with the patients the desire to see from AfME a clearer sign that allegiances are changing, if indeed they are. The patients have sorted out the science here very well. It boils down to common sense in the end and it would be good to know that at least everyone supporting PWME is aware of the arguments.
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@Jonathan Edwards. Oh I didn’t know that afme had stopped supporting the ME biobank project. It was their one single positive act in their 30 years of existence & they stopped it? That is indeed very disappointing.
Could it be that MEGA wants to build its own bio bank and refuses to include the already existing biobank samples in its remit? I know that CS and the MEA suppprt the inclusion of this ready biobank in MEGA. It is the only biobank that includes patients from the full spectrum of ME including those severe/very severe (house/bedbound) and I don’t understand why MEGA would not gladly use these samples? Is it because they want to use more lax selection criteria to maximise huge numbers of of vague fatigue patients? ME patients might not even get a look in or disappear amongst the thousands of general fatigue (possibly psychogenic in origin) participants?
 
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Sasha said:
But my main point still stands - I think we have to careful about using statements from years ago to say anything about what AfME thinks now.
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For some reason this reminds me of the 12 step program, these steps in particular
8. Made a list of all persons we had harmed, and became willing to make amends to them all.
9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
10. Continued to take personal inventory, and when we were wrong, promptly admitted it.
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None of this not happened.

I also would not mind seeing this step
4. Made a searching and fearless moral inventory of ourselves.
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AfME Webinar:
1749 Meeting the needs of people with MECFS

"GET, CBT and PACE

•Exercise–Should not be encouraged to undertake vigorous exercise (eg.
'go to the gym' or 'exercise more’) as may worsen symptoms.
•Graded exercise therapy (GET)–May be helpful for a specific sub-group,
though some report adverse effects on symptoms and functioning. CG53
says GET should be completely avoided in people with severe M.E./CFS
and, in mild/moderate M.E./CFS, only be delivered by appropriately
trained professionals. SGPS says it’s essential that “agreement and
negotiation” at the centre of any GET programme.
•Cognitive behavioural therapy (CBT)–Coping strategies and coming to
terms with illness
•PACE trial–concerns about the methodology and conduct of the trial, its
clinical value"

Interesting that although it appears on the slide, no mention/comment on the soundtrack is made about PACE.

Also CBT is described as a coping strategy, whereas it is well-known (or at least it should be by the countrys 'biggest ME charity' who actually had a hand in the PACE trial) that the CFS form of CBT is not about 'coping' or 'coming to terms with the illness' but trying to persuade patients that they only 'think' they are ill.

slides here: https://www.dropbox.com/s/6vkm0zglg6xp6bw/1749 Meeting the needs of people with MECFS.pdf?dl=0

sound here: https://vimeo.com/simonwade/review/245274449/bdaadd0d71

eta: this is from 30 Nov, 2017 and was their ' latest educational webinar for primary healthcare professionals'
 
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Sly Saint said:
CG53
says GET should be completely avoided in people with severe M.E./CFS
and, in mild/moderate M.E./CFS, only be delivered by appropriately
trained professionals. SGPS says it’s essential that “agreement and
negotiation” at the centre of any GET programme.
Click to expand...
Woefully wrong. There is no evidence that GET is of any benefit to mild/moderate sufferers, and plenty of reports of it being extremely harmful.

There is no such thing as an appropriately trained professional in this context - what is the appropriate training for delivering a useless / harmful treatment? To imply that it's important to make sure that the person delivering the harmful treatment has been trained to do it properly is ridiculous. What qualities would be the most appropriate for such a therapist - a complete lack of empathy? Willingness to accept dogma unquestioningly?

As GET is always inappropriate for ME sufferers, anyone delivering it can only have been inappropriately trained.
 
TiredSam said:
Woefully wrong. There is no evidence that GET is of any benefit to mild/moderate sufferers, and plenty of reports of it being extremely harmful.

There is no such thing as an appropriately trained professional in this context - what is the appropriate training for delivering a useless / harmful treatment? To imply that it's important to make sure that the person delivering the harmful treatment has been trained to do it properly is ridiculous. What qualities would be the most appropriate for such a therapist - a complete lack of empathy? Willingness to accept dogma unquestioningly?

As GET is always inappropriate for ME sufferers, anyone delivering it can only have been inappropriately trained.
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And by the same token ...
“agreement and negotiation” at the centre of any GET programme
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... is equally absurd. How can anyone sanely agree and negotiate when the 'expert' side is in fact doing so from a position of ignorance, whilst supposedly advising the inexpert side.
 
Sly Saint said:
•Exercise–Should not be encouraged to undertake vigorous exercise (eg.
'go to the gym' or 'exercise more’) as may worsen symptoms.
•Graded exercise therapy (GET)–May be helpful for a specific sub-group,
though some report adverse effects on symptoms and functioning. CG53
says GET should be completely avoided in people with severe M.E./CFS
and, in mild/moderate M.E./CFS, only be delivered by appropriately
trained professionals. SGPS says it’s essential that “agreement and
negotiation” at the centre of any GET programme.
•Cognitive behavioural therapy (CBT)–Coping strategies and coming to
terms with illness
•PACE trial–concerns about the methodology and conduct of the trial, its
clinical value"
Click to expand...

It sounds like they still believe in CBT/GET so are trying to make it acceptable while trying to get us (and reality) off their backs, a strategy of invent an exception that allows them to "keep the faith" :emoji_face_palm:
Its been my experience that sometimes people (or organizations) can't accept reality so they try to have it both ways as an illogical strategy to mitigate the (cognitive) dissonance
 
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This was how Action for ME justified involvement in the PACE trial (taken from Interaction magazine 2004):
Interaction 2004.jpg

This is on the above page:
PACE Interaction 2004.jpg

As I said before, it was sold as research on pacing as members understood it.
Action for ME (as far as I know) have never apologised for misleading its members or the ME community as a whole.
 
Sly Saint said:
This was how Action for ME justified involvement in the PACE trial (taken from Interaction magazine 2004):
View attachment 2523

This is on the above page:
View attachment 2524

As I said before, it was sold as research on pacing as members understood it.
Action for ME (as far as I know) have never apologised for misleading its members or the ME community as a whole.
Click to expand...

Knowing what we do now and what was known before the Pace results (will try to add link here later-link below) I am enormously fed up that AfME took the line it did. There was plenty of research around showing the failures of GET before 2010. A withdrawal from PACE and an apology THEN should have been given, let alone now. I was diagnosed in 2008 and only capable of reading minimally i.e. Interaction. I could not critique the literature, nor did I have the capacity to compare other ME organisations.

My husband did a sponsored activity in 2011/12 which raised a very substantial amount of money. I so wish AfME had been more upfront with its members. That money should have gone to biomedical research. Instead it went to AfME.

ETA:http://www.merseysideskeptics.org.uk/2009/10/skeptics-in-the-pub-november-19th-alastair-miller/
There is information in the comments below this article demonstrating what was known about GET in particular in 2010. I wish AfME had been more attentive to this in informing its members.
ETA2: brackets
 
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