Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

sorry to be the one pouring cold water on this (but then it wouldn't be the first time )

as others have pointed out this 'review' has been going on for quite some time

There is still the issue of the Pacing leaflet where S4ME's 'contribution' is acknowledged, even tho' our discussion was largely critical and certainly not an endorsement of the final draft.

https://www.s4me.info/threads/draft...er-gladwell-now-sent.39853/page-2#post-549771

Whilst it is good that AfME appear to realise that they have a problem, they have known about it for a while and S4ME have had some success in holding them to account.

Of course what individual members want to do is up to them but I would be very concerned about any kind of formal collaboration with S4ME.

 

Do people think we could potentially collaborate on a specific project, as long as it was understood from the outset that the S4ME name/logo would not be displayed on the material or in publicly-available descriptions of it, unless we were given time to put it to a vote after completion?

Something might come up in future that looks like a good idea, and one of the ways we could be helpful is in determining whether it actually is a good idea. If we'd done that, AfME probably wouldn't have wasted its time and risked its reputation trying to deliver non-care, not-plans.

 

Indeed. Might it be useful to send a brief message from the committee, thanking Sonya and reiterating that they're always welcome to post early-stage proposals for new materials or projects on the board? We tend to be direct with our criticism, but they do get a lot of experienced people working on it. In some cases we might end up saving them time or money.

 

Article in The Canary by Hannah Sharland.

https://www.thecanary.co/uk/analysis/2024/09/04/action-for-me-cfs-care-plan/

 

Is part of the problem that they’re based in Bristol?

 

Yep.

I can see why a charity might want a relationship with healthcare professionals. They know what's happening day to-day in clinics, what the management and policy issues are, what advocacy approaches are likely to be the most/least effective, etc. But they need to be representative of different parts of the country and up to date on the NICE guideline.

The object should be to advocate for improved practice, not to disseminate examples of existing practice—apparently, given the lack of critical appraisal, for no other reason than that the charity knows the clinical lead.

 

Actually my experience of him as a physio was rubbish. The one time I made the effort to see him in person, it was to take advantage of having access to a physiotherapist to discuss some MSK issues that pre-date my ME. He didn't even examine me, except for trying to force me to do the Beighton test after I'd just said "I'm not hypermobile. I've never been hypermobile" & told him that, when I tried the test at home, only one elbow appeared slightly off. He then mocked me for not trying hard enough to push my non-hypermobile hands back a few minutes after I'd explained that, due to my diagnosed tendinitis, bending my wrists that way causes severe pain.

 

I like the idea of inputting into/helping with advice on the actual method for making sure input ‘heard’ is properly representative and qualified if it’s along the lines of the PPI discussion on other forum.

agree with caution in general and I’d hope they’d understand

 

I can understand the problem for Sonya and maybe for the charity as a whole, whoever that actually consists of.

There really aren't many people to turn to. when it comes to people actually involved in ME/CFS service provision there is hardly anyone that seems to be up to speed on NICE 2021. In theory there are one or two but with Luis nacu in Canada, apart from David Strain, it is hard to think of physicians to advise - and these are issues for physicians, not rehab therapists.

 

I feel like there needs to be a type of “style guide” for ME which journalists/newspapers have, except we need our charities to follow it first.

information needs to be concise- seems obvious but needs pointing out.
The starting point should be “how can we make this compact, short and to the point?” The use of an Easy-Read version would be helpful, too, or a quick summary like Cort does on Health Rising “the gist”. I noticed recently on a Decode ME live, patients commented they wanted “straight to the point” answers to questions as there was a lot of chatter and waffling by the presenters.

Then there are certain words and phrases which need to get in the bin, too many to list, frankly the myth of the “stable baseline” is one, and it’s cousin “slowly increasing from a stable baseline”. Actually I’d ban baseline, replace it with bandwidth.

 

To which questions?

 

Exactly. And if you're an advocate for pwME and there isn't anyone to work with, you could choose to say so rather than trying to make do with what looks like the next best thing.

In theory, one of the charities could put out a call for input from physicians interested in guiding specialist or GP services toward full implementation of the 2021 guideline. That would both highlight that implementation still hasn't happened yet, and offer an opportunity to anyone who isn't known to them. And if all they get is tumbleweeds, it adds power to their argument that the NHS is still failing pwME.

Given the existence of BACME it would be provocative, but we could do with a bit more backbone.

 

I can’t remember, I think the one to explain why the 1 year delay. They have transcripts so it will be in there I think.
To be fair I think the presenters kept getting caught up in how everyone worked so hard it wasn’t anyone’s fault it was going to be delayed, but it was getting in the way of just telling people what they needed to tell them. It’s not really Decode ME who are the problem, 24 page “Care plans” and 90+ long questionnaires are.

 

Hmm, "But, the one challenge that we were not able to overcome was the operational and capacity issues at UK Biocentre, and they’ve been the most significant factor affecting our project completion timeline." seems as 'straight to the point' an answer as is possible to give.

A webinar, typically, is an opportunity to go into more depth about a subject than is possible in a newsletter, where we explained, "But the next step – extraction of DNA at UK Biocentre – has faced operational and capacity issues.

We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date."

 

Maybe it’s it the video