UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

If the NHS can’t implement the NICE guidelines then why bother with PROMS. Well we know why, check-box “look what we done” head pats.
Whilst Millie and Carla lay in hospital being deprived of liberty and tortured, and Maeve lies in her grave. Shame on MEA and Tyson and Gladwell.

 

Ah, yes, the "Bad Patients" who dared to do their own research, and speak to other patients in those pesky support groups, and then dared to ask questions like "hang on a minute..". Absolute militants! And worse still, had the absolute temerity to not get better. No, we don't want those ones...

 

This.

I want to scream this from the rooftops. People are dying horrible, awful, preventable deaths and the main charity is spending precious research funding on... another questionnaire.

 

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.

 

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 devices to objectively measure activity levels] and "how do you feel" [questionnaire].

https://www.s4me.info/threads/which...-for-clinical-trials.29829/page-7#post-451866

 

Yes, it would help a lot if they rephrased it as "I was given information and support to make sense of post-exertional malaise (PEM) and the other symptoms of ME/CFS."

 

The clinical assessment toolkit is listed on the MEA Page called 'Ramsay Research Fund'

https://meassociation.org.uk/category/ramsay-research-fund/

 

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.

 

Slightly worrying i.e. I'd be concerned if Ramsay funded/approved funding for this s--t! Which they didn't correct?

 

That's interesting, I'd no idea about Solve's program. I've almost certainly read about work funded by it, but assumed it was co-funded by the MEA.

 

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 projects of the highest quality are selected. Applications receive two independent reviews and proposals are ranked numerically on a defined scale based on significance, innovation, approach, and overall impact."
https://solvecfs.org/research/ramsay-research-grants/

I'd assumed that a "Ramsay" label meant that Ramsay appointed assessors/evaluators and they (Ramsay) decided what gets funded; whereas I now guess that MEA have a pot labelled "MEA Ramsay Research Fund" and they (MEA) evaluate projects i.e. independent of Ramsay - correct?

At the very least MEA should make it clear how the "MEA Ramsay Research Fund" is administered - do they?

 

The name Ramsay is just in memory of Melvin Ramsay as far as I know. Anyone can have a Ramsay Fund.

 

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 debacle by following Solve's model - independent (trusted) panel of advisors! Maybe someone will suggest that to MEA --- presumably MEA have already thought of it?

 

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 same & fundraise for it!

 

A few pages ago I linked to it, they follow an industry-standard process where a panel reviews applications -apparently. I think we were wondering about asking to see the decision or grant application.

one of the PROMS will generate an info set which can apparently be used in research?

 

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?