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New BACME document: ME/CFS Care and Support Plan Guidance

Not an expert but I don't think a resting HR in the 50s is 'too low'. Mine can also be in the 50s, although usually around 60 bpm.

Yep. And being able to attribute PEM as a discrete episode attributable to X, Y, or Z, is just nonsense. Doesn't work like that. This is gross oversimplification.

Classic MEA just sharing the article without any analysis / caveats. Not good enough. EDIT: There is now a post below this saying MEA recommends pacing etc, but at the very least they should be adding these disclaimers to the original post. Others in the replies have raised the same concers...

This article cleverly uses the story of someone much more severely affected than those in the study (90% of whom were employed).

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 Unfortunately the secretariat support, once provided/funded by AfME and MEA, was withdrawn.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.