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Would like to see a deep-dive into this data if it's available and someone has the time.

or three cultural theory graduates.

o_O

There's also the European ME Coalition, who are part of the World ME Alliance. https://europeanmecoalition.com/about/ It's all a bit confusing, isn't it. But we have to get people together, internationally. Everything is too disjointed.

My first takeaway from this is that these people are now organising internationally — specifically across northern Europe — and it's key that patient organisations do so too.

This is how I feel. Yes, physically disabled, but the cognitive problems are huge. Just writing this now is very hard work. I have been vocal on the forum about my problems with visual processing. Right now just looking at this screen is hurting my brain. I can't read more than a paragraph or...

Because individuals represent PAG at such meetings, and PAG therefore needs to discuss their collective position on a range of different matters — one that should be in line with that of the wider patient community (if possible) — both before and after meetings. Otherwise the individual is just...

I agree. We've got patients at the table now. PAG must continue, and I hope they can recruit enough new members to lower the workload on individual members.

The real issue with PAG is the amount of admin work involved. That sort of work is not easy when you have ME. Unfortunately the secretariat support, once provided/funded by AfME and MEA, was withdrawn. I still don't understand why they won't provide some further support. A related issue is that...

MEA advert for PAG applications now online: https://meassociation.org.uk/2022/12/applications-invited-for-merc-patient-advisory-group/

Minutes for November's Members' Meeting. https://forward-me.co.uk/16th-november-2022/

Adrian, I know you're really busy, but the MEA page for MERC and PAG desperately needs updating (https://meassociation.org.uk/research/cfsme-research-collaborative/). Perhaps now is a good time if this ad is to be posted, otherwise it gives inaccurate information about MERC and PAG. I think...

This is from their mailing list. Came the other day.

Amazing that these people see severe M.E in the clinic and still don't get it.

I would imagine this association might not apply to the LC-ME subset, and is in fact due to the association between BMI and possible cardiovascular / breathing issues, and the known extra risk of developing conditons such as diabetes after covid infection.

"The research also shows that people with long Covid are much more likely to need additional, and often lasting, NHS care than those who make a swift recovery." Mindblowing.

I pride myself on being able to find and understand information very efficiently, but I have no idea what 'Tantali fibromyalgic supplicium' means in this context. I suppose it's probably latin, but Google is not much help either.

Yes, I realised that! This is more common than it should be. I've seen it dozens of times.

I'm afraid much of the research in this area from Japan and China is not worth the paper it's written on. It's strange because in some areas — such as solid-state physics — they excel. "16. Kuratsune H, Yamaguti K, Watanabe Y, et al. Acylcarnitine and Chronic Fatigue Syndrome. in: Carnitine...

No.