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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 "Ramsay research fund" might concentrate minds?

I don't think it's appropriate for public bodies to hide behind plainly invalid outcomes indicators - patient-reported outcome measures (PROMs). OK I now realise that that seems naïve ---! Worse still the public body doesn't have to make up the (+ve) results - they have a charity [MEA] to do...

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] money was allocated - trusted folks like you. Begs the question why e.g. Charles Shepherd [ME Association] doesn't suggest that they avoid repeating...

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 year, with the possibility of renewal for projects yielding promising results. Applications receive a rigorous, double-blind peer review to ensure...

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 highlight Jonathan's excellent publication* as a way of doing that! @Keela Too - you're in northern Ireland - perhaps the local charities are working on...

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 to Ramsay relates to MEA.

Yea that's the fundamental point - it's a questionnaire and we know from PACE questionnaires are misleading re assessing long term ability to increase activity/improve functioning. There's an excellent thread on the forum* which basically recommended hybrid assessment - actimetry [Fitbit type...

Yip point taken but can you/someone explain the references to "Ramsay Research Funding" @Lou B Lou made - I attend meetings which representatives of the organisation which (I assume) funds Ramsay also attend - so I could raise issues with Ramsay funding via that.

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 such? " WELCOME TO BACME British Association of Clinicians in ME/CFS A multidisciplinary organisation providing information, resources, education and...

Reminds me of a slightly Kafkaesque(?) experience when I was working in the civil service. We were required to do diversity training which basically meant identifying your prejudices - there were some academic references and I looked at one which basically said that the training was useless at...

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 is getting some of the ------- to accept the label"---

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 - prevalence in identical twins]! There is still a psychological treatment i.e. aimed at changing beliefs - evaluation? Trials on a drug. My impression is...

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 re this BBC Radio 4 program* - think Carol* develop mass spectrometry to look at molecule shape. Also, in this thread there's discussion of "messy...

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 be Noble prize territory oh and a drug target --- squillions of £s! Presumably the chemical raising the alarm would be coded for by a gene* and/or the...

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 didn't recommend CBT (failed cost/benefit test)? However, we don't have a drug/intervention which works! Perhaps the political argument should be...

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 - blood/plasma samples]. It does illustrate why it was difficult to accurately diagnose early stage MS i.e. prior to the rollout of this test.