Action for ME (UK) fundraising

[Hutan]

I think there needs to be published ME/CFS clinical pathways for each clinician type that the AfME clinicians agree to abide by. If AfME are asking for donations from the ME/CFS community to fund medical services, it's reasonable that we know exactly what our donations are buying. And endorsement of clinical guidelines, more than anything I can think of, really tells us what someone or an organisation believes about ME/CFS.

Another benefit of having such guidance for clinical care is that it could be an exemplar to point to when trying to improve national clinical guidelines (e.g. NICE, the Australian guideline) and clinical care (e.g. of the specialist ME/CFS units), and when criticising the practices of others (e.g. BACME).

If AfME don't yet have acceptable written clinical pathways, I think if they said that they plan to establish them over the next year, that could be enough to make them worthy of support. They would need to specify what experts and sources they would use to develop and review it e.g. the S4ME guidance to clinicians which is under development, Physios for ME, expert patients, posting on this forum for feedback.

 

[Nightsong]

AfME has certainly improved of late. Their collaboration with serious researchers is very welcome. Some of their political efforts may be beneficial. However I can't, in good conscience, donate to a charity that does not accept that we need supportive medical care rather than psychobehavioural clinics, and will not campaign for their closure & replacement.

Such clinics are causing harm every single hour of every single day that they continue to operate. I simply cannot contribute to any charity that refuses to even attempt to address this.

 

[Andy]

However I can't, in good conscience, donate to a charity that does not accept that we need supportive medical care rather than psychobehavioural clinics, and will not campaign for their closure & replacement.

Has AfME stated that those are their positions on those two points?

 

[Hutan]

Has AfME stated that those are their positions on those two points?

There is a difference between what an organisation says and what it does, although clear statements of beliefs and intent are a good step.
For sure, AfME is heading in a good direction (while the MEA definitely is not).

But, it was not long ago at all that AfME was promoting material produced by Peter Gladwell. Remnants of that material are still on its website. For example, under 'Resources' 'Managing your illness', there is this case study which sounds a lot like a BPS pacing up approach.

As an in-patient I was helped to frame a pattern of exercise. Every hour I did something, like walking; initially for ten yards, which was my task on the designated hours. On other designated hours, it was arm exercises or trying to read. Initially one line of The Sun. After six weeks, I was into a rhythm. Seven o’clock dress and breakfast, eight o’clock go for a walk, nine o’clock arm exercises and so on. This rhythm suited me, never a change just gently doing a little more each day or week.

At the end of the six weeks, I was out of bed, feeding myself, going for short walks, reading a little, watching TV in short bursts. The very best trick I learnt was to decide and write down the evening before what I was going to do the next day, this instilled the will I/should I do this or that problem. Always scared of a relapse.

After six months at home, I was still following the same routine, by now I could walk just fine, I was reading books and interacting with people. After 18 months I was still following a similar routine, but I started to volunteer in a charity shop and slowly after another six months I was more easy going with my activity levels. My energy levels were good, although I still had the headache and muscle spasms. The headache is still there thirty years later, every minute of the day, but an excellent clinical psychologist helped me with CBT, and I am in charge not the pain.

Seven years after first becoming ill I started in paid employment. Job done.

I can't recall a statement by AfME saying the latest BACME material is not adequate for guiding clinical care. @Andy, are you aware of one? Or of published clinical guidance that the clinicians they pay to provide services to their clients promise to adhere to?

(edit to add - compliance with the NICE guidelines is not enough, it was too much of a compromise document.)

 

[Nightsong]

Has AfME stated that those are their positions on those two points?

They have published, earlier this year, a document authored by a principal UK psychobehaviouralist and board member of BACME. Their website described that as a "collaboration with North Bristol NHS Trust"; the Bristol clinic is run along psychobehavioural lines, as I think the overwhelming majority of clinics are. They were therefore collaborating actively with a psychobehavioural clinic earlier this year.

It was reported reliably on this forum that their leadership believes patients are overly negative about the clinics. In the last few years they also employed in a clinical capacity for their own service someone whose professional opinion it was that ME/CFS was a functional disorder.

I have had ME/CFS for over two decades, and followed events closely in the last few while I have been more severe, and in all that time I have never seen any statement from AfME that expressed any negative sentiment about the clinics. Their recent survey referred to the clinics as "specialist services"; they are neither.

They may not have issued a formal statement that states openly that they support BACME or are satisfied with the NHS's clinics, but they certainly have not publicly given any indication that they have campaigned against, complained about, or objected to them in any way.

I think I'm entitled to draw inferences from all of that.

 

[Andy]

I can't recall a statement by AfME saying the latest BACME material is not adequate for guiding clinical care. @Andy, are you aware of one?

No, hence my question.

Or of published clinical guidance that the clinicians they pay to provide services to their clients promise to adhere to?

Source,

"Our doctors are GPs who have a special interest and experience in treating people with ME and whilst they are not Consultants in Specialist Hospital Services, our clinicians represent a step between standard general practice and specialist services.

A consultation with one of our doctors offers a supportive, personalised and empathic place to be heard.

Our doctors can help with diagnosis, information and recommendations.

They cannot prescribe but are able to give evidence based management advice in line with the updated NICE Guidance (National Institute for Health and Care Excellence), published in 2021.

This guidance was commissioned by NICE and developed at the National Guideline Centre which is hosted by the Royal College of Physicians."

I think I'm entitled to draw inferences from all of that.

Of course, and my question was to establish whether it was a stated position by AfME or an inferred opinion.

 

[Trish]

I agree with others that AfME has made huge steps forward in recent years under the leadership of Sonya Chowdhury.

At the same time we see the MEA heading off rapidly in the wrong direction with their support for and collaboraton with BACME and support of NHS psychobehavioural clinics.

I can see it's difficult for AfME to say outright that the MEA and BACME are getting it wrong, but they could, and I think should, cut ties with the current Bristol clinic who have previously provided most of their materials for patients and clinicians and remove all such materials from their website.

I would also be much more inclined to give a substantial (for me) donation to AfME if they were to state openly that they do not support BACME style approaches and the current NHS provision of psychobehavioural cliinics promoting harmful pacing up.

I would definitely donate if AfME took the lead in campaigniing for the NHS to close these clinics and replace them with a physician led service with specialist nurses who can do home visits and a focus on what pwME of all severities actually need from the NHS.