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Great questions, Terrible answers. Comparing illnesses would reveal that over the past 5 years they invested about £5m in ME/CFS, £57m In long covid, £75m in Parkinson’s disease & about £500m in dementia. All that the tried, tested & failed open field of "welcoming proposals" is doing is...

I think grouping together for *some* advocacy makes sense and have often wondered why our supposedly collaborative charities haven’t teamed up more with female predominant, psychologised and neglected fatiguing chronic condition organisations to make noise about injustice and the Costs of...

All the charities should be pushing this EDM. Yet only meruk , the ones without the membership to mobilise, are. The others just did their usual of oooh look someone is doing something we ought to support in a token way to look “right on” but then we will let it sink and go into rollover mode...

I agree that question Cuts to the chase. It seems the charities drive the questions often , so they need to. As a severely affected persOn , I still have no vision for what NICE compliant is supposed to mean, The coroner said severely affected outpatient Care wasn’t really covered. Afaic...

It’s so odd to me how it’s *justifiably* seen as so terrible for a person of working age to be facing increasing disability with neurological conditions and yet for ME/CFS it’s kind of like, you can still tap on an iPad twice a day, why on earth do you expect us to do anything.

Video footage from the covid inquiry where the senior advice not to give a long covid label was discussed

Breakdown of the September EDM signatures 39 The Liberal Democrats 4 plaid cymbru 2 independents 2 Green Party 2 SNP 2 The Labour Party 1 DUP 1 ALLIANCE 0 conservatives

The mirror article did name one in a matter of fact - vs a pile on way “The Covid-19 Inquiry this month presented a key document from a Government pandemic meeting from the summer of 2020. There the minutes show that Dr Shamez Ladhani, the Consultant in Paediatric Infectious Diseases at Public...

Interesting the words "variation in models" given that we have that heritage study for their benefit, being held up as m.e money which was supposed to "explore models". i think targeting the radical and more media active green leader pronto is worthwhile , trying to get m.e adopted as a cause...

Here is the possible influence of the Sussex m.e group. We’ve got Sian Berry the green party , who should be one of our strongest allies and instead she’s calling for talking with BACME about specialist services, who have done diddly squat to push for physician-led services over decades for m.e...

It’s astonishing that from 2007 these clinics were simply allowed to essentially put up a sign saying we don’t do severe m.e & get away with it. It would be interesting to know if it happens elsewhere in the NHS. I know dementia is poorly cared for medically and left to GP’s who are variable/...

So sad that people who could be powerful ambassadors in the field were/are not because Colin patient rep has got in their first telling them how great BACME & rehab is for CFS & how good the nhs service is, despite it explicitly, when I last looked, excluding the severely affected and no...

I haven’t seen them on X I don’t think. I did some AI chat - see screenshots - about the DHSC delivery plan as is and legal challenge, it seems to be suggesting that the omission of severe ME care is due to the lack of additional funds committed by the plan, which limits its potential. I...

Thanks. It sounds better but still too vague. Afaics, the UK "delivery plan" proposed support services for the mild to moderate, very severe m.e cyphoned off as an acute-need category … unsure, as so little info is shared, whether that's purely around nutrition & hospital care or covers ongoing...

Why are pwME treated differently from other people with chronic health conditions? We demand to know. Because doing so keeps ICB & NHS costs down/ they will skimp as long as they can get away with it and they’ve gotten used to minimal service provision. Less of an error, more of a strategy...

“Establishing a research hub for ME/CFS would not provide the same level of flexibility” https://www.meresearch.org.uk/establishing-a-research-hub-for-me-cfs-would-not-provide-the-same-level-of-flexibility/ When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health...

I can’t put in to words how mad I am at the NICE definition and hOW every time I’ve tried to raise it with the elite it’s ignored. It’s even worse & completely unusable on a survey, because there is no moderate - severe workaround , it’s so obviously deeply flawed. My only engagement with the...

I think most of us just assume most of what the MEA do is decided by Dr Charles Shepherd, especially on the science/ medical front, maybe their medical advisors help? I would like Action for ME to be transparent about their research subcommittee too. The U.S. orgs publish regarding this, UK...

This looks like a let’s look like we’re doing something and maybe get some shares and paths into the long covid commUnity as we do so exercise. MEA spent 2023 doing their count me in survey. I can’t see how this will add much beyond what was discovered in previous ones, as literally very...

Yes, the difference with Germany and the UK is the innovation & protest and visibility vs rollover, collaboration and trying to keep patients passively patient.it does feel like being buried alive or as Jen brea said, going missing and no one looking. Since when do we shrug off young people...