Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

TiredSam said:
That line is starting to look like a bit of ubiquitous fluff which Drs, therapists and anyone else who reads it skims over on their way to get to the meat of whatever it is they're reading. "Yeah yeah, but where does it say what I actually have to do ...". I certainly glaze over whenever I read / hear it these days. It's a bit like the health warning on a packet of cigarettes, it's alway there and and you may occasionally notice it when opening a packet, but does it stop people smoking? Does it even make them stop and think? Or do they just take out a cigarette and light it regardless?
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Exactly.

There will not be a single NICE guideline, for example, for any illness of any kind that says 'do this to the patient, even if they give no consent'. It's always consent based. But not giving consent can be viewed almost as if you are irresponsible and not accepting care, whether for a heart attack, ME or cancer. Then the insurer or DWP comes to get you, because they read A4ME stuff and then damage you by telling you what you refused
 
InfiniteRubix said:
Is there any other charity that has such a dubious record and/or dubious reasoning that persists in practice (regardless of apologies)?
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BACME (https://www.bacme.info/) and the Sussex ME Society (https://measussex.org.uk/) perhaps are more dubious but don't approach the size of AfME.

InfiniteRubix said:
Are there any other similar charities that are as well funded, or as corporately slick and professional in terms of their output, as A4ME?
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No.

InfiniteRubix said:
Can anyone compare and contrast their funding base versus the ME Association, ME Action and others? i.e. are they better funded and funded by whom? I ask this with cynical presumptions at heart, based on my very cut and thrust previous existence.
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AfME and the ME Association are the two largest charities, particular in income, latest figures put AfME's income, £681k, at double that of the ME Associations, £326k. As to where they both get their funds from, I'd need to look further.
 
This is from Twitter this morning. It is related to the roll out of universal credit and appears to be related to a meeting/ seminar with stakeholders and/ or interest groups and DWP. The tweeter' s interest is mental health, but i' m pretty sure the attitude would traverse a range of conditions given the info known from appeals.

It is shocking. If @Action for M.E. do not understand the significance of interpretation and interactions they should read this.

If following this, the toolbox is not retracted and steps taken to address damage, then serious questions need to be raised with executive and funders

Check out @KateFlood’s Tweet:

The webpages continue to be a cause for significant concern. Particularly page re children - you would never consider it to be a condition with such potentially devastating impact from the picture painted by words and stock images.

I would not be able to direct anyone there - as a resource they are largely a waste of energy.

At the very least there should be a notice advising content is out of date and should not be used .

The relevent information is not " new" and has been in the public arena for months / years.

The lack of input to this is both underwheming and disappointing and capable of iatrogenic harm

Actions speak louder than words, and sadly the people who can least afford to be, are being let down by an organisation whose whole raison d' etre is to help them .

I find it very, very sad ( amongst other things)
 
TiredSam said:
Being confronted by the hard facts of this illness (it's not going to get better and you need to cut down your activities and reduce / stop work if you are to have any chance of managing it and minimising the damage) is not easy to accept
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That is what most of us here have discovered but do we have the evidence to extrapolate that to being a the case for anyone with an ME/CFS diagnosis ? I often wonder to what extent the population of people we mean when we talk about ME/CFS is the the same population that other people or organisations mean when they use the same labels, and then with all the unknowns and variations in severity, symptom profile, age, years ill, etc I'm not really confident to say that anything I know about ME/CFS is a hard fact.
 
rvallee said:
Is a lobby group. Technically a charity but also technically an astroturf (i.e. fake grassroots) organisation.
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not quite:
"
Who are we?
The British Association for CFS/ME (BACME) is a multidisciplinary organisation for UK professionals who are involved in the evidence-based management of patients with CFS/ME.
Our purpose
BACME exists to promote and support the delivery of evidence-based treatment for children, young people, and adults with CFS/ME in the UK. "

in otherwords PACE trial supporting BPS medical professionals.
 
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