United Kingdom: ME Association news

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.

 

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

 

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.

 

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?

 

Nobody has been on to police the comments since this morning?

 

I'd love to think this is a sign of rebellion in the ranks by their poor social media team

 

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.

 

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.

 

Some interesting comments still standing under this MEA Facebook post, under which Dr Shepherd comments:

"...Most of the posts on MEA Facebook come from Emma, who manages our social media
I fill in with some extra items in evenings and weekends
Dr CS MEA"

https://www.facebook.com/meassociat...HgjjCdPCFHq7aZWT6afSKybPrSiAtnfNr9LqAEPVuXgUl

 

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.

 

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...

 

I see they now charge £10 for a copy.

https://meassociation.org.uk/product/me-association-me-cfs-pvfs-clinical-and-research-guide/

 

Haven’t they always charged for it, whilst also sending free copies to nominated medical professionals.

 

I bought one many years ago. Can't recall what I paid then.

Unfortunately, by charging for it it's not as easy to check what the content is now.

 

Moved posts

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.

 

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

 

MEA is running a survey on the subject of "Hypersensitivities, sensitivities and intolerances":

https://meassociation.org.uk/2025/02/blog-survey-hypersensitivities-sensitivities-and-intolerances/