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As an aside, regarding the above post, is the CMRC/ MERC essentially over now?

Action for ME letter to Wes Streeting signed by APPG members. September 2025 Edited to add: Actually, it was vitally important that the Medical research council set up a program of research on all aspects, including commissioned, 20 years ago (as recommended by the government chief medical...

Yes massive hunger pangs right now, always caused by exertion / poor sleep, tiredness is known to do this to everyone but I guess we hit exhaustion much sooner / more often

This man Zac Polanski who tweeted support has just become leader of the Green Party, which has a justice/ fairness agenda. A chance for some more ally building & political pressure. Adrian Ramsey & Sian berry Green MPs sit on the long covid & ME all party parliamentary group. Only 4 MPs so far...

At a very weak APPG meeting in around 2023, when there was clamour for the appg to do something about very severe ME / critical cases safeguarding, in response to Maeve and others that had made the news, Dr strain spoke at it & the very minimal minutes provided didn’t imo show much urgency or...

My brain is toast but this is the material that I’d read previously that analysed stroke and dementia disease etc burden & charity & government spending in 2016. It’s very good, although I don’t pretend my brain could compute it all...

With Dr strains many jobs - diabetes dr, old age dr, BMJ rep, long covid research Co ordinator, how much time is he devoting to ME/CFS & how many severely affected, besides A handful of critical cases, has he ever seen, to have the role he has writing guidance?

Yes I haven’t watched that yet as it’s lengthy but plan to, thanks for the reminder & link! I know it is the case for many illnesses but I don't think it is for stroke, dementia. I will see if the video covers those.

Danny is doing amazing fundraising and is right to try to inspire people with similar capabilities to do the same. I'm not sure it's accurate "The majority of research funding for all diseases comes from charities". I think when I was looking in dementia and stroke material, admittedly in the...

I could not understand exactly what they wanted. I personally want severe ME (housebound or worse) to Get the same support & medical care that other advanced & / or serious conditions do. I also think allowing the medical profession to essentially opt out of caring by leaving it to "ten...

My left arm yes

Has there been independent assessment of the money required to adequately implement the ME roadmap? I understand the imo unduly low $50m ask is based on a perception of tough times and what’s considered winnable, but still is in contrast to the near $2b long Covid has had , including $500m for...

To be fair there isn’t many options and as an occasionally consulted Dr on general m.e he might not have been too bad. However, he clearly lacked regarding MBN & I saw problems in his early nhs modules but afaiu they were being open to feedback. I'd guess that the DHSC delivery plan groups or...

We need to push for patients affected being able to assess this in such an area of distrust, and lack of expertise especially. You’re suggesting a worrying motive around handling of very complex cases? I also dislike how all of the severe ME APPG inquiry evidence gathering is behind the scenes...

I just took a look at the APPG members and compared to the past it’s a very long list and there’s some really, in other contexts, big hitters so it would be a great shame if they could not be utilised to challenge what’s being presented as Good enough for m.e going forward. I think the numbers...

Surprisingly positive news report from the 25% group https://25megroup.org/uk-government-publishes-final-delivery-plan-to-transform-me-cfs-care-and-research/8411/

Just adding here as an aside this fabulous speech in parliament from Labour MP Tony Wright (& co founder of the ME APPG 1998j regarding the 2002 chief medical officers report. It seems so much better - more focused, urgent, informed - than the much of the representation we get today and yes...

Thanks for sharing your knowledge . “There was an extremely strong, unanimous late stage stakeholder pushback on the original proposed FDP particularly around the absence of substantial health and research actions which forced the addition of a few more significant actions” Can you specify...

It’s been an MEA favourite topic since Dr Charles Shepherd had That positive muscle biopsy test that I don’t think there was replication of. I thought that the muscle biopsy research was back on the hot list with the wurst study? How much a £40 000 imaging study can show, i don’t know...