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Poi Points in my view : 1) long covid APPG do not see collaboration with ME/CFS as key 2) Drs still hold double standards with ME/CFS at the bottom of a heap they're happy it stays at 3) Jo platt seem to have accepted NIHR/ MRC narrative that m.e is not in a place to receive funding which...

July long covid appg Minutes https://www.longcovid.org/images/Meeting_150725_-_Minutes_-_Approved.pdf MOH outlined that Long Covid services are different to cancer services. CB advised that in theory, Long Covid services could all be involved in research recruitment but we are at the stage of...

Also when googling The ME association severe ME survey The link goes to the paper copy of the ridiculously large number of questions put together in one head f*** survey. Excuse the language. , https://meassociation.org.uk/wp-content/uploads/2025/06/SEVERE_ME_SURVEY_JUNE2025_FINAL.pdf so if...

Someone said The ME association put the severe ME survey out in April via their newsletter for subscribers which is what they're citing as the start date of consultation. However, I didn’t see it on any social media until It was posted here. I don't think the 25% had it on their social media...

In less official literature of the Xmas appeal, The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk...

Not much information there. “Sessions will include a number of speakers focusing on the medical needs of this patient group as well as working with young people, adults and their carers” So they recognise medical needs. The issue is medical needs being met and medical expertise being developed...

We have imo contradictory position where we have enough evidence that the need for early diagnosis and careful management is recognised globally & in most uk literature as being crucial to provide “best outcomes” (or conversely, prevent bad outcomes) but no clear recognition that nhs failure...

I can’t see how The ME association can produce a document on prognosis that refuses to acknowledge explicitly that the nhs had as its core treatment approach since around 1996 for m.e graded exercise therapy and corrective brain thinking treatment and that this, along with general lack of any...

The standards required of FND services - page 7; https://www.england.nhs.uk/wp-content/uploads/2025/08/annex-a-specialised-neurology-service-specification-minimum-services-neurology-subspecialties.pdf

Which symptoms might you refer to? Plenty of neurological in those with exertion induced severe ME

FWIW UK ME charities sit on the board of the Scottish Scottish neurological alliance About us https://www.scottishneurological.org.uk/about/

Parkinson’s campaigning https://www.parkinsons.org.uk/news/parky-charter-hits-over-100000-signatures

I think that this is a type of minimum service provision that people with severe ME as A minimum should be able to expect. All pwME have had from the is they cannot require anything of services. It’s all up to ICBs. I don’t think there’s any minimal standards of care for m.e services or any...

NHS England sets out national standards to improve neurology care for adults NHS England sets out national standards to improve neurology care for adults – The Neurological Alliance https://www.neural.org.uk/news/nhs-england-sets-out-national-standards-to-improve-neurology-care-for-adults/ NHS...

Odd assertion isn’t it?

Theyve indicated this was released in April? Was that just to members? I didn’t see it anywhere. From mid june to mid August is too short to expect decent and considered feedback from the severely affected.

BACME are such a problematic org. They supported a rehab/ psych approach that disabled people & deterred research.Their woeful clinics openly excluded the 25% severe +were happily non medical etc so the only specialist available for the severe but most disturbingly for crisis cases, has been an...

I think the key bit oonaagh was correct on was the DHSC delivery plan written as it was, due to feeling an absence of pressure. They did what they could get away with because there wasn’t a public or media onside the m.e cause, outside of the community that were not widely mobilised or vocal...

Statement from long covid kids Scotland When Engagement Fails: Why Long Covid Charities Resigned from the National Services Scotland Long Covid Network. https://www.longcovidkids.org/post/when-engagement-fails-why-long-covid-charities-resigned-from-the-national-services-scotland-long-co...