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This is another misleading, minimising clanger “but severe ME/CFS, which is thought to affect a quarter of those diagnosed, leave patients housebound or unable to work.”

Apparently they were gonna put out the headline chronic fatigue in press release but the association told them they had to add on the word syndrome. Can you believe it? They actually had consultancy about inappropriate language and they were gonna call it chronic fatigue

“The plan includes increased funding for research, awarded through the National Institute for Health and Care Research, into how existing medicines can be used to for ME/CFS. This initiative aims to give patients access to a wider range of potential treatments.”% I can’t believe they’re trying...

The 2002 chief medical officers report was The foundation. I’ve lost more than half my life in bed, and all the supposed best years are over , they can **** off with talks of beginnings. We are way beyond first step territory now but the fact our charities have no justice agenda for the...

I’m reminded of the m.e observatory work with the severely affected in the 2000s. People were just followed up to see outcomes but nothing else was done to help the community. I understand need for checks but In the context of virtually no other research, this type of thing in my opinion is...

Google is sayimg Summer recess 24th July. Dr Charles Shepherd is Intimating the publishing date is imminent and I guess it’s likely the top level collaborator orgs know. I just want it to be over so that this pause that has been on us since 2018? When MEA started working with NICE where...

There was loads of hype about this around 1990s. I was mild-moderate then. I took regular increasingly cold baths. Zilch benefit.

What do you mean similar messages? I too have been watching that campaign, the government response is that Parkinson’s has already had £70+ million tax payer funding over a period of 5 years from 2019 (giving it a £100/patient / year government investment vs ME about £4). Those efforts of both...

Yes I think it is being tied to DecodeME and was used as a time filler until DecodeME publication, probably not expecting the year delay in that. Even with Sajid Javid, both meruk and Invest in ME were saying his wording at the start about funds for research being available from existing budgets...

Do they do that? It does seem like it’s a dirty little secret they are keen to bury. If it was something good it would be something to promote as "we are finally the ones who're going to do right by this community & affecting 100s of 1000s and their families”

2 working days to publish …..

The 400 000 figure is based on the Ponting et al study that wasn't specifying post-exertional malaise?. Afaiu they've agreed on a 1.3m total for m.e and m.e type long covid combined Which is near 1 in 50.

This politician posted in response to the assisted suicide of a women called Sarah on Twitter. He’s clearly very compassionate and moved by our predicament "Please don't give up! Research is running at full speed. In the coming years, we will be able to understand and treat the immune system...

What has been the reason given for the Medical research council “not being able to” set up a research centre of excellence for the group of neglected and stigmatised illnesses with some overlap ME/CFS , fibromyalgia, POTS and now long covid, that have not been served by current structures and...

There was a UK child case of twins girls in the news a few years ago. I think that one Of them had got m.e age 8 and the other is fine. It has relevance here but i am also keen to collect it for a letter but can’t find this newspaper article. If anyone has it can you please post it.

Caroline cupit et al & this PACFIND was funded from 2019 by versus arthritis (who’d joined the MECFS CMRC) From 2021, the research director of VA was Dr Neha Issar-Brown - https://www.midandsouthessex.ics.nhs.uk/people/dr-neha-issar-brown/ Versus Arthritis appoints next director of research...

Cupit presentation 6-caroline-cupit-presentation-pdf https://ctmuhb.nhs.wales/services/research-and-development/research-development-conference/2024-research-development-conference/oral-presentations/6-caroline-cupit-presentation-pdf/ 2024 “Opportunities for cost-effective care •...

Is there any correlation with how they’re defining severe in long covid and how it’s used in m.e ? - not including the NICE guidelines definition that pushes it down to less than 5% function. I saw someone with sjogrens calling herself unable to improve her “extreme fatigue” yet is able to go...

One of the authors of the Garner favoured paper sits on the medical advisory board of the FMA Fibromyalgia Action

Garner seems to have a particular vendetta vs ME charities which is maybe because he detests the thought that these illnessss are chronic and people not being able to muster up their strength to overcome them but is rather strange and unfortunate when Charles Sheppard gave him management advice...