United Kingdom: ME Association news

NelliePledge said:
Agreed
The talk about services implies they are everywhere which they certainly aren’t and this point is never highlighted. In my view they should have focused on the areas with no services and tried to influence a new model as @Suffolkres and folks in that area have been trying for years rather than shoring up BACME which with the Tyson work they seem to be getting more and more entrenched with.
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Yes good point. Important context.

This could have been really powerful. To have a fresh model and provide an example of good practice.

Difficult to know if the establishment would simply shut down progress here too. But surely the best opportunity if there is one at all.
 
Nightsong said:
If they genuinely do consult widely about, and get high-quality professional advice on governance that would be welcome, as they have got themselves into a real mess of late.

On the NHS services project: I don't see any acknowledgement of the extraordinary deficiencies of the "specialist services", which are not specialist and often are not even services. Being NICE-compliant is their responsibility; the MEA should be pushing for them to become genuinely useful and supportive, which would mean a complete overhaul of everything they do. Perhaps the MEA could consult on what pwME actually want to see from such a service before proceeding? (I don't know what their intentions are here but focussing on care plans or holistic, personalised therapping or some of the other things technically compatible with the NICE guideline would be a serious error.)

And what puzzles me about the forum announcement is what niche the MEA hopes to fill. There are significant patient communities on Xitter and Bluesky. S4ME always has quality discussions around science and advocacy. There are subreddits of all kinds. AfME apparently runs an "ME Friends Online" forum for uncritical peer support. There are volunteer or local organisation-run groups and Facebook pages where people can talk about things available in their areas or the nicest spots for a wheelchair-accessible outing: as a national charity, MEA couldn't really become a repository of that kind of local knowledge.

So, where's the "gap in the market" for a new forum? If they wanted to spool up additional online outreach efforts the obvious place to do so would be on the newer social media platforms used principally by younger people (e.g. Tiktok).
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I’ll have to come back to this. But I think this sounds simple in theory but has been a problem to get in practice - and it needs the right people (and to do so the right opportunity ie not huge amount of energy that then isn’t listeners to and involves broken recording it as it is ignored or ‘misheard’ again and again) otherwise it results in something counterproductive

I get the idea of ‘going local’ but it’s just meaning you are dividing the little resource up in the bigger community who are capable when the broad principle issues are ‘in common’ such as the wrong type of staff running it limits them never being able to offer anything anywhere near what would be useful if they aren’t medical
 
Dx Revision Watch said:
https://www.facebook.com/meassociat...ZR4J9PG3WbQtUKZKe12WT7dbQ28y3p1Nq549a3WrZFJJl

The ME Association Chairman’s Statement for 2024 - The ME Association

There are a couple of comments to this post but we'll see how long they stay up:

Vanessa Clark
"On social media we continue to inform and encourage dialogue", until people start asking too many questions then we threaten to sue them.

Colin Barton
Some say that the MEA should have a CEO in post.


Last time Mr Barton posted that comment on a post all the comments to that post were hidden.
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Interestingly, Mr. Barton's comment seems to have disappeared entirely now. There were 26 comments, a number of which are hidden, but it dropped to 25 and however you slice and dice it on the FB filters, his isn't there any more.
 
Fainbrog said:
Interestingly, Mr. Barton's comment seems to have disappeared entirely now. There were 26 comments, a number of which are hidden, but it dropped to 25 and however you slice and dice it on the FB filters, his isn't there any more.
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Interesting that Colin Barton’s more recent comments have also been disappeared, but mine remains. I would have thought his no less controversial than mine, despite mine also containing positives as well as negatives.

Indeed why would suggesting a CEO be deemed controversial?
 
MrMagoo said:
Nobody has been on to police the comments since this morning?
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I think Colin’s replies to a couple of posts were still there in the early afternoon, but are now gone. They certainly were there a while after his own lead comment had already gone. When I made my comment his lead comment had gone but there were still a couple of replies by him to others.

I wonder if there is two levels of moderation, a higher level deciding on individual comments occasionally and a lower level more regularly removing comments by named individuals.
 
Peter Trewhitt said:
Interesting that Colin Barton’s more recent comments have also been disappeared, but mine remains. I would have thought his no less controversial than mine, despite mine also containing positives as well as negatives.

Indeed why would suggesting a CEO be deemed controversial?
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Depending on who has been moderating today and whether they know who Mr Barton is, possibly criticism from a local group chair who was at one time a trustee of the MEA is perceived as more problematic. I can currently see 17 out of 28 comments. I suspect all the comments will likely have gone by tomorrow morning.
 
Fainbrog said:
I am however unsettled by the negative comments.
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This 'negative comments' or 'negativity' thing has become a meme amongst the charities. It is the one thing perhaps that I have heard Sonya say that I disagree with.

People with ME/CFS are absolutely entitled to bombard charities, government, medical professionals and everyone else with negative comments because everyone is making a mess of things (except maybe a few lab researchers doing their best). Time after time we see ill-advised decisions and the putting out of misleading and unhelpful information. It could so easily be put right if those doing this acknowledged the need to be honest. Because the alternative has got the patient community nowhere and will continue to do so.
 
Jonathan Edwards said:
This 'negative comments' or 'negativity' thing has become a meme amongst the charities. It is the one thing perhaps that I have heard Sonya say that I disagree with.

People with ME/CFS are absolutely entitled to bombard charities, government, medical professionals and everyone else with negative comments because everyone is making a mess of things (except maybe a few lab researchers doing their best). Time after time we see ill-advised decisions and the putting out of misleading and unhelpful information. It could so easily be put right if those doing this acknowledged the need to be honest. Because the alternative has got the patient community nowhere and will continue to do so.
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It’s annoying that it’s seen as an “ME patient community” behaviour. There are countless examples of people doing a “pile-on” or bombarding people, politicians, TV presenters etc with opinions. I’m sure there are strategies to deal with it, in this day and age. It’s a feature of social media, not a “ME patient” behaviour.
 
I commented a little while ago on some of the free resources the MEA is putting out: does anyone know whether the "Purple Book", intended for & which they apparently send out to clinicians, is any better?

I have an old paper copy from many years ago and while it had some useful information I didn't think much to its concept of ME/CFS (it gave far too much credence to a variety of low-quality research & its model was the "complex multifactorial" one, even embracing the concept of predisposing, precipitating & perpetuating factors, although not psychological ones), but apparently it has undergone significant post-NICE revisions - is it any better?

I think it would perhaps be useful to take a look at the material that MEA are sending out to GPs & physicians in the NHS...
 
Nightsong said:
I commented a little while ago on some of the free resources the MEA is putting out: does anyone know whether the "Purple Book", intended for & which they apparently send out to clinicians, is any better?
I have an old paper copy from many years ago and while it had some useful information I didn't think much to its concept of ME/CFS (it gave far too much credence to a variety of low-quality research & its model was the "complex multifactorial" one, even embracing the concept of predisposing, precipitating & perpetuating factors, although not psychological ones), but apparently it has undergone significant post-NICE revisions - is it any better?

I think it would perhaps be useful to take a look at the material that MEA are sending out to GPs & physicians in the NHS...
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I see they now charge £10 for a copy.

https://meassociation.org.uk/product/me-association-me-cfs-pvfs-clinical-and-research-guide/
 
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The moderation team split the discussion of the MEA's governance issues from the news from this organisation.

Discussion about MEA governance issues can continue on this linked thread:
United Kingdom: ME Association governance issues

2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts here, notice of his withdrawal here

2024 AGM, company documents, trustees and historic governance issues discussion starts here​
 
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Cinders66 said:
For me, this is just so far from what we need charities to be doing
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I suppose it is important to bear in mind how diverse a group of people we are. There are parts of our community I find alienating, for example the MEA UK Christmas hamper project for valued carers, seemed to be valued by a strong contingency of the membership.
 
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Peter Trewhitt said:
I suppose it is important to bear in mind how diverse a group of people we are. There are parts of our community I find alienating, for example the MEA UK Christmas hamper project for valued carers, seemed to be valued by a strong contingency of the membership.
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as far I understand mea were gifted 100 hampers , which is perfectly fine to distribute and was a nice gesture from the generous person. I personally would’ve preferred them to have been keen on helping those who didn’t have support, rather than rewarding the excellent carers of those who did but tmea has never been about helping the worst off & fair enough if it created amongst the supported mea members a sense of well being and gratitude. Where people took umbridge was the fact that the MEA then wanted to devote their fundraiser at Christmas, to buying and giving away even more hampers to well people who gave great support or care to pwME , which isn’t afaic a priority for most people and when in the new year the MEA once again stressed that funding something like a hyperbaric oxygen clinical trial wouldn’t be within their budget to do
 
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