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Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency

Clearly if nath / NIH had bothered to fully believe in & investigate this "Chronic Fatigue syndrom e" In the decades before now, these new health care professionals he is capable of feeling empathy and urgency for wouldn't even be in the predicament they are now. If he thinks loosing physical...

I couldn’t see this here, regarding the DHSC delivery plan: “Observations from and following the final meeting of the UKCRC ME Research Working Group” May 2024 https://www.investinme.org/Documents/ukcrc24/ukcrc-epilogue.pdf

Afaiu, the protest regarding NIcE was regarding the set up of the panel. This was in a targeted way from #MEAction only, so was unsucccessful in creating change. It’s this set up, or atleast the refusal of a committee this "balanced" to agree recommend physician-led services, consider properly...

I think Calling the illness m,e versus Chronic Fatigue syndrome is Something probably all those who are severely affected do. I’m not going to refer to my level of dysfunction/ distress from physical symptoms as chronic fatigue or support that name when it is trivialising and was encouraged for...

with with no funding, it can't be anything other than dreadful. the lives of m.e have been too wasted for them to keep taking time for reports that exclude patients and then fail in some way. It was never justified for the MRC / UKRI which, lets remember for long covid, went straight in...

Yes, the NICE guidelines wording will have been carefully argued and presumably the paragraph "services may include:" followed by a whole list of optional HCPs was the most that could be agreed with 50% of the committee coming from a biopsychosocial /status quo defending position. So...

The Nice guidelines are not based on the medical care model tho?, or physician-led services so the two things are contradictory? We have either got the medical care model with nurse & full therapist support, such as what MS and Parkinson's have, or you have the Nice guidelines which is to me a...

no. I don’t think that meets the needs of the severely affected who may need an ongoing range of support eg joint care , emotional support / counselling. So along with an OT for equipment, this is a suite to access as required but used in a way completely differently to what nhs has been...

I think that the severe require A specified suite of therapists Accessible as required in some regions, *as well as physician-led services* to meet medical needs & get patients actually seen and cared about .which is actually the NHS standard for other comparable conditions. The question is...

buying a new bigger gaslamp. I disagree with framing a majority desire for substantial action for the government as “the” problem. For most, its a far more compelling answer than accepting or tweaking the status quo and waiting another decade

I would estimate that this would be a very minority view in the wider ME/CFS affected population

Dr Charles Shepherd words on subject

Death isn’t inevitable with tube feeding & Dr Strain had no expertise to base such assertions on afaic . I’ve been tube fed twenty years and got my tube very late which is part why I have no chance of recovery without treatments being found that aren’t being looked for with any urgency. I have...

I'm surprised that Amy, who I believe had some mild post-viral syndrome once, is framing long-covid like hiv, presumably because of her belief that viral persistence is the driver and causing multiple consequences, and also because that's the way to get her the funds she wants? Most of the LC...

About time someone did.

London gives Simon Wessely among 40 others another award for outstanding contribution https://news.cityoflondon.gov.uk/40-remarkable-individuals-awarded-freedom-of-the-city-of-london-in-group-ceremony/

That response is so inhuman she might as well be a bot. I’m not sure why questions always seem to be worded in a way that permits skirting over, oblivious responses? Are there some rules that questions must not use emotive language or specifics, because they’re so bland and short and then...

Queens was the m,e service in a hospital in Essex run by Prof L Findlay. It ran from 1992? till about 2010. It was, I think that set up by Findlay & Dr Dowsett & Prof Chaudhuri ended up there but afaik m.e service cuts had turned his role into a diagnostic only one and cruelly he didn’t seem to...

Queens hospital UK which used to have an inpatient ward for the severe, used to use grades. I think that’s better as stage perhaps suggests one way progression. I can’t believe that 25 years on we still have and use UK severity scales that don’t do proper justice to either the mild or the...