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

The MEA have been (sort of) monitoring compliance of services with the 'new' NICE guidelines, or at least getting some of the online content corrected.
But maybe it's time the charities got together and did a repeat or enhanced version of the survey #MEAction did on ME services in the UK in 2019.
Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose' | Science for ME (s4me.info)

just for comparison BACME also did one around the same time
BACME CFS/ME National Services Survey Feb 2018 (Report Published March 2019) | Science for ME (s4me.info)

Things have changed a lot with the 'arrival' of Long Covid so it would be good to have a better picture of what is currently going on, particularly given the current state of the NHS.
The Charities could then put their heads together (maybe a first but you never know..) and come up with some kind of plan to prioritise what services should look like. This might need to include looking at the long covid guidelines (if there are any, I haven't checked and have lost track of what is going on with the amalgamation of clinics).

 

My first quote was from the video.

It is just a reminder to me that it isn't possible to please all of the people all of the time.

 

In theory, yes, but if you work in an organisation that rightly considers it is obliged to have trustees with relevant skills relating to professional aspects and always has to have some trustees to fulfil its obligations you may be a bit stuck. You would need to have trustees happy to admit they weren't up to the job yet prepared to continue as if they did. It gets a bit tricky.

Fortunately, it looks as if common sense can prevail at times.

 

Of course it’s not, but I think you’re taking it personally because of your involvement. I’m sure if you can check the log of the comments you will find that one.

That doesn’t detract from my point that consideration should be given to a style guide, and focussed communications which don’t make unnecessary demands on pwME energy.

 

Right. Shame.

Still…

When someone asks for some sunglasses, explaining to you that the glare is hurting their eyes, and you don’t have any you wouldn’t necessarily be being helpful if you said “No, sorry about that, I don’t. Don’t worry though I’ll not let you go without. Here have some of this instead.” Whilst you enthusiastically squirt a full bottle of sunscreen into each of their sore eyes.

 

I feel like Gladwell’s involvement is a relic of an earlier time. Things have changed.

 

Article in The Canary by Hannah Sharland:

“An ME/CFS charity has just shamed itself again. So why do people still support it?”: https://www.thecanary.co/uk/analysis/2024/09/04/action-for-me-cfs-care-plan/

 

Action for ME's AGM is next Friday: 13th September.

"All are welcome"

To attend, register through their website: https://www.actionforme.org.uk/news/2024-annual-general-meeting/

Post copied to the AfME news thread. Go there to discuss the meeting.

 

That reads really well, @Trish.

 

Great reply, many thanks Trish

 

I've found the DecodeME videos and Q&A, clear and informative

 

The survey would need to be completed by pwME (their carers or families), as the MEAction one was.
The aim would be for it to be publicised in NHS clinics as well as by charities and other ME orgs.

 

Thanks @Trish.
Excellent work.

Sorry it cost you so much. I hope you are now able to do something distracting like watching slow moving nature videos or something to refresh yourself and take mind off all this stuff here.




I don’t feel great about this second reply from Sonia. But I am too exhausted to work out specifically what concerns me.

How’s everyone else feel about where we are?

 

I'm still impressed that Sonya saw and acted on the problem straight away. It would have been so easy for her to retreat into defensiveness.

I do wish she saw the advantage of allowing S4ME to participate as a community, though. I wouldn't put myself up for a place on any consultation group, partly because I don't have the energy, but also because I'm afraid I might miss things. Some of our other members might have similar concerns.

It's so different when there are numerous pairs of sharp eyes on it, and there are people with a variety of skills, aptitudes and experience, and the process can include those who're severely ill.

 

As so often I think @Kitty has put it well. I agree. Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.