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I think stimulants are primarily if you don't need to rest much during the day , if you need to you can't as the on switch is on so I think in MS for example they used to help people in work feel more with it , which is completely different to helping people who are resting a lot get some...

This style of medicine really thrives in a UK style state health system where there is no patient power . I can’t see her working in any type of patient-dr partnership. She really really didn't like how the concept of LC started with patients. Also She will be lapped up by those who want to...

I have always thought a national charity that has that name and now uses that bold new logo should take on the job to lead campaigns yet Action for ME , in contrast to the MS society & parkinsons UK closed their short lived campaigns network a year or so ago. I couldn't see much difference in...

This afaik was the joint conference with the Medical research council. The beginning of the collaborations. I cannot find much about it only reference to it. There used to be stuff online Indicatting there’d been concerns regarding transparency but i can’t find it. Following this, the m.e...

Surely, if the care and support plan, aside from most areas providing nothing in the way of care of support, were so central to how pwME were to be “managed’ according to the NICE guidelines, something from NICE in the way of a template and examples should have been drawn up by those involved...

This journal article listed on Twitter and archived here contains most of Suzanne's section on long Covid, where she says a lot of it has to be psychosomatic with all the faulty reasoning & assumptions that led to m.e being mistreated for decades...

Interesting about his sister

ME/CFS at about 57 000 claimants was just above Multiple Sclerosis, which has a helluva more focused research effort, although it says these numbers have risen sharply. Does this help guide as to the numbers severely affected?

NHS? Which still puts emphasis on tiredness. The ME/CFS composite term serving us well again in the media.

How is government committed to ensuring quality services when they’ve given ICBs free rein to commission or not ( as with m.e) and 1/2 of existing services have been cut in the past year ?

You are being fair and the letter is good but I don’t think that the MEA have been consistent in their calling for physician led services, which the NICE guidelines fall short in requiring. and it may well be that they are being influenced by forums like this which are formng a consensus on...

Further information about this society from the The ME association https://meassociation.org.uk/health-social-care/updates/the-post-covid-society/ [Mod edit to fix link]

posted by The ME association, who are a member of this organisation. 2025: Clinical Post Covid Society Conference for clinicians, researchers and health services commissioners The #ClinicalPostCovidSociety (CPCS) is asking clinicians, researchers and health services commissioners – to kindly...

Yet to see independent analysis regarding abolishing nhs England (which hasn't served pwME at all) but interesting that a main reason was the duplication of staff, efforts - 2 people doing the same thing in different sections and therefore waste of resources ... which has certain resonances

I don't think anyone Who's been managed badly and become severe doubts that bad management & exertion is why they got severe. We know and warn people about the harms of repeated post-exertional malaise because there is correlation/ risks, so it's not just conjecture. It's like the correlation...

The ME association infographic for primary care https://meassociation.org.uk/literature/items/primary-care-infographic-for-healthcare-professionals/ do we have anything in line with what neurological illnesses get, that covers complete care needs including secondary care? Surely their provision...

Optimal clinical pathways for adults with neurological conditions have been developed. Links to various conditions contained on one page. Optimal Clinical Pathways — National Neurosciences Advisory Group https://www.nnag.org.uk/optimum-clinical-pathways This is a news item on the neurological...

& if they don't? What if all the commission boards decide that m.e in never-ending tough times isn't their priority? Is that just okay? What has been the penalty or pushback against swathes of the United Kingdom That haven’t provided any service or have provided half-heart minimal measures and...

The APPG report on nhs services in 2010 said: NHS England in its only stock take I am aware of , in 2025 are reporting problematic variation, nothing was done between 2010-2025 about this and I'm unsure whether physician-led services , which patients *do* want, are being asked for by ME...

I can’t as I’m not a member and this was just posted as an excerpt for wider access and is presumably for members only but maybe other people can share.