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I think that was The equivalent of filiblustering to avoid having to say anything particularly condemnatory about the DHSC delivery plan, which patients expect - as representation / advocacy- but which would offend the gvt/ medical establishment The ME association like to keep on side of.

Maybe hopeful or something potentially positive. Whatever further studies show ,it is Nice that it was actually research on severe ME patients. The emphasis in the news reporting of it was on diagnosis & better management vs the research & treatments Long-time severe need

My oura 3 is on its last legs. I cannot decide whether the 4 is worth the £100 extra than the 3 I can get for £200 on Amazon. Better sensors would help with oxygen & HR & HRV ....

It is reflecting patient will. Patients have fought a long and hard battle to get m.e put alongside Chronic Fatigue syndrome after years of seeing CFS scorned & most would rather it replace CFS entirely. I was just saying to my mum today it was crazy to use a name based around chronic fatigue...

They say there was other reasons but severe m.e has been very infrequently covered by the APPG & on the last severe m,e meeting 2013 there were just 2 MPs in attendance so it does reflect not just indifference but also a failure to grasp the situation (which I personally see as scandalous) or a...

I saw this

Yes, having shown little enthusiasm for most patient endeavors, I was just wondering why the gush over this. Maybe it’s a conservative enough approach to back.

Why isn’t the MEA providing materials and organisation of local campaigns for decent services, as well as challenging the clear loophole whereby ICBs can opt out of anything much according to budgets etc? Why do they act as if Dr shepherd writing a letter to each service is the best way to...

“We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will...

. That org have no place here, from when I looked, their local service is one of the "mild-moderate only" clinics and the Sussex groups done very little to improve on that.

Is this fundraising for The ME association they seem very keen to be associated

Pretty mad that The ME association & BACME put out overlapping consecutive surveys. Unsure why The ME association didn't ask BACME to make theirs as accessible. I am not aware of BACME ever surveying the severely ill before. For me, This is the crux. We shouldn’t in 2025 be asking the...

If you are right that the very severe care side was to cover eating difficulty alone , They are framing m.e care as fatigue management and feeding tubes, status quo tweaked and this in my view is not right.

Much appreciated thank you!

Wow, I'd love to have investigations but being bedridden ain't going to happen. Did they prescribe any medication & did it help please?

Baffling that small fibre neuropathy, that’s been talked of for a while, wasnt rushed through for ME/CFS investigation anywhere. I look forward to kings college switching their narratives from "biopsychosocial of no organic cause" to this type of research.

I can’t see how they have Sarah and Whitney’s endorsement for something vague?

I don’t understand what The vagueness that is deterring me from donating is driven by. I don’t need to know sensitive individual case studies in order to be told a clear vision & who is leading it etc. Afaics the strongest case is regarding what appears to be the ongoing plan to offer nothing...

On the positive, presumably there will be debate afterwards, if Oxford uni can provide some students with teenagers experience of m.e or CFS it would be good to see the challenge. It would be good to see more live debates (challenge of nonsense biopsychosocial framework) because the ones with...

Action for ME have been highlighting the collection of parliamentary champions as their big advocacy tool. I don’t know what the below could actually mean. “while working to advocate for improvements through other channels”