Action for ME has joined S4ME

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

 

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.

 

This is the general thread Sasha

 

Oops, you're right!

Sorry, @Sly Saint!

 

exactly, it is a quote, the whole post apart from the link.......not my use of the present tense .....who am I to change it.

eta: have added 'from 2010'

 

Sorry, I didn't see the quote marks.

 

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.

 

It’s still the case. They have never even criticised SMILE and LP. Do they still advertise LP in their mag?!

 

@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?

 

For some reason this reminds me of the 12 step program, these steps in particular

None of this not happened.

I also would not mind seeing this step

 

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'

 

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.

 

@Action for M.E. , Clare,

I have had mild (ie life-changing but not house- or bedbound) ME for 4 years. Is it @Action for M.E. 's position that I should find myself an appropriately trained professional and give GET a try?

 

And by the same token ...

... 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.

 

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"
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

 

AfME sounds a bit like Healthwise. Acknowledging that PACE results are unreliable, but unwilling to completely let go of CBT/GET, citing anecdotal reports it can be helpful for a subgroup.

 

This was how Action for ME justified involvement in the PACE trial (taken from Interaction magazine 2004):


This is on the above page:


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.

 

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

 

About ten years ago I sold Christmas cards to raise money for them!