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I get what you are saying, Kitty, and I think that's probably the case for many pwME. For me I think if I'd had real time wearable data when my ME was mild and I was still working and caring for a family it could have made a big difference. I was always on the edge of tripping myself into...

I noticed that too. If I get dressed and go for a walk in my garden in the morning then go back to bed for the rest of the day, there's no one to get my and my daughters' meals, or do the other things that need doing in a household of two sick people. Oh, and by the way, Mr Riley, a large...

S4ME is its members. We don't have staff who can take on things like this. If you or anyone want to work on it by all means do.

The people judging the drawings were psychologists or doctors who are experts in pain and didn't know the participants. Is this an art competition or a scientific study? Participants are asked to draw freely, yet their drawings are being interpreted as revealing psycholical flaws. Surely...

So Riley gets to make a statement on the MEA website that isn't a real apology, it's a string of excuses and self justifcation. So he sets up the straw man argument that he wasn't advocating GET, as far as I know no one has accused him of doing so. Then he goes on to compound the problem by...

I've just had a quick look at the MEA trustee, staff and volunteer list. I didn't realise they employ so many people. I see Russell Fleming has worked his way up from part time volunteer through various roles to now Head of Project Development, a full time very responsible position...

I'd vote for closing it down and transferring the materials written by Charles Shepherd to AfME or archving them in accessible form once Charles retires. Research funds could be transferred to MERUK and funds given for running costs to AfME.

https://www.s4me.info/threads/open-letters-to-the-uk-me-association-trustees-about-a-research-project-developing-proms-led-by-sarah-tyson.37937/#post-524843 The only response by Neil Riley to our complaint about Tyson's behaviour was that the complaint was 'noted', and that the MEA have full...

Well done #ThereForME. It would be interesting to know what the response they got from the MEA said, and who wrote it.

Can you give a link to the FB post so we can see the context, please?

I haven't followed what sort of interactions on Twitter they say have been spreading misinformation about them and creating a lot of work, so I can't comment on that. Surely those people if they want to continue to be vocally critical of AfME will simply follow AfME to Bluesky or TikTok anyway...

Oh dear, Neil Riley, that is the most tone deaf, idiotic, patronising, scientifically ignorant article. How could the MEA have gone so far astray? Like many others I paid my subs to the MEA for years. No more.

Ah, OK so not AI generated this time. There are so many faked pictures all over social media it's hard to tell.

I suspect that image is AI generated.

Ah, OK, well done for trying.

That's wonderful, @Hoopoe.

Given that I think Charles Shepherd is doing an exceptionally good job producing good materials and doing media interviews etc, I'm glad he's stayed on. I have seen no evidence of anyone else at the MEA doing anything useful.

In that case I'd just point out for the sake of other readers that there's no evidence, and leave it at that. There's no way to persuade fanatical fans of alt med.

I think I would respond by asking them to provide links to clinical trial evidence of efficacy.

As far as I know Perrin hasn't done any clinical trial of his method. His PhD research was laughably bad. For me that's enough to doubt everything he says. It's all self promotion, not science.