Thanks, so they say the right things it's just that they don't deliver them! Perhaps they'll review their procedures - zero contributions to their...
I don't think it's appropriate for public bodies to hide behind plainly invalid outcomes indicators - patient-reported outcome measures (PROMs)....
Ah that explains it --- I've noticed previously CVs of assessors but I now guess that this was Solve and they were highlighting how their [Ramsay]...
This is the blurb from the Solve site (I've underlined text): " Ramsay Grants Lab-Based Research Grants Ranging from $35,000 to $55,000 for one...
I think there's an opportunity here i.e. to ask the UK Devolved administrations what they intend to do re the evident gaps in Maeve's care and...
Slightly worrying i.e. I'd be concerned if Ramsay funded/approved funding for this s--t! Which they didn't correct?
I think Solve M.E. is a/the(?) major funder of Ramsay Research Fund - but yes, good to clarify that MEA fundraises for Ramsay & that the reference...
Yea that's the fundamental point - it's a questionnaire and we know from PACE questionnaires are misleading re assessing long term ability to...
Yip point taken but can you/someone explain the references to "Ramsay Research Funding" @Lou B Lou made - I attend meetings which representatives...
I thought this was ME Association's own money?
Had to look up "BACME" - my initial reaction was --- if only these statements were true -- surely this violates advertising standards or some...
Reminds me of a slightly Kafkaesque(?) experience when I was working in the civil service. We were required to do diversity training which...
That seems like a very effective counterargument to those who propose BPS as the underlying cause.
It must be such joy to have a bin labelled - "FSD" -- perhaps we could suggest sub-titles "all(?) of the difficult cases go here" --- "challenge...
Yes - thanks - I forgot to post the link.
I found this interesting on a number of levels - the BPS bunch got the boot when genes turned up [it seems to be a highly genetic condition -...
I recall an eminent medical Doctor/scientist stating that there'd need to be a new discovery i.e. to make progress in ME/CFS - that came to mind...
Strike me that if there is a response to poor quality antibodies (which should be eliminated but aren't) then finding a biomarker for same would...
Ultimately financial cost/benefit type measures form part of the decision (made by NICE) on whether to fund a treatment - I think that's why NICE...
I think this [Blood neurofilament light chain (NfL)] was the test used in the high profile study linking EBV (virus) to MS [US Army recruits -...
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