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I see from twitter this has already been dealt with. No need to contribute.

These are examples of what NIHR were previously funding for ME/CFS (from searching s4ME forum) Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery | BMJ Paediatrics Open (2019) https://bmjpaedsopen.bmj.com/content/3/1/e000525.full BPSU study - Severe chronic...

I think that with The NIHR specifically, they have been having a two tier approach. Up until 2020, afaia the bulk of NIHR CFS funding was going to biopsychosocial, CBT, fatigue & rehab. Apparently they joint funded DecodeME which is now coming to an end. There was no commitment for NIHR funding...

hi Aaron. How have you gotten on with this?

Thanks, that’s still constitutes government funding though?

MRC are funding the LOCOME project https://www.ed.ac.uk/mrc-human-genetics-unit/news-and-events/news-2024/uk-grant-improve-diagnosis-treatment-me-cfs-covid UKRI Role of pharmacological activity of autoantibodies in ME/CFS Lead Research Organisation: University of Nottingham Department Name...

Yes, at the previous debate the minister replied that people could be in bed “for weeks“. If the ministers are not getting the severity then of course the urgency and resources committed are not commensurate with need. Difficult to have any trust in the process with this fundamental flaw at...

I could not see the actual bit about disorders eating in your quote. I’m not sure, given how little the BACME/NHS services try to engage with ;/ help the most sick at all, they can make statements regarding many people eating in a disordered way.

This is great. Has #MEACtion made any noises about this at all? Pretty baffling that a charity, whose raisin d’etre was once obtaining missing $$$ for the #millionsmissing, has Suddenly gone quiet on wider ME research funding , at this crucial time and after they were active afaiu in the initial...

The very severely affected case In the news is in Lancashire. BACME list 2 services for Lancashire - one is called CENTRAL LANCASHIRE MOVING WELL ME/CFS SERVICE - that is only for the mild-moderate . I think that they have a theme going and it sums up what services they are delivering whilst...

I think it’s clear more has to be done. the NICE guidelines have existed for some time, they are not stopping disbelief and harm and really why should a two? page chapter substitute the expert care others get. I assume when foggy dog started it was based around a fundraising dog and not...

Not bad, needs to convey PEM & risk of harm at any exertion. It was probably written in less than five minutes too.

The ME association forgot to notify in advance too.

The ME association today Dr Charles Shepherd: Edited. They have had since October 2021.

I am not clear whether the update constitutes the anticipated March update or not? The charities spokeswoman said on Facebook a quote that it’s in the plan but if nothing happens they will have another go. This really isn’t good enough. The charities would know if there is an imminent...

Moved posts edited. it has been indicated on twitter that the NHS website has already had a rewrite as part of the DHSC plan. What we now read & what has been quoted this week, IS an update written for the DHSC. Whether what’s there now is interim or supposed to be the End result...

The ME association xmas appeal was for advocacy and information rather than research. I assume that has been used to cover more of these costs. It raised £50 000. Last years xmas appeal was to give out hampers.

They were available to download even if some were paid for - it wasn’t just so they could be sent but an income stream.

it blurs over how in the strong difference of opinion, what clinicians and patients “now” agree on is that patients and their advocates/ most charities were right all along. The word harm is used without acknowledgement that that “harm” extends to accounting for why many of the patients who are...

Posted in 2020!