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On the MEA page about the Ramsay Research Fund I linked above: They also say they only fund biomedical research from that fund.

MEA Ramsay Research Fund https://meassociation.org.uk/research/ Solve ME Ramsay Research Grant Program https://solvecfs.org/research/ramsay-research-grants/ Two different funds run by different organisations in different countries.

I assume this is part of the crossover between traditional Chinese medicine and western medicine.

I think there's a major problem with this article, namely that the authors accept without question the claim that the rehabilitation approach helps the majority of pwLC. There is no evidence to support this and they seem to think that collective 'knowledge' of clinicians is sufficient basis on...

Starting to read the whole article, they go into the model each approach is based on, basically biomedical and BPS.

I wish they would write in straightforward English. I think what they are saying in the abstract is 1. Clinics run by therapists work on a rehabilitation model aiming to correct 'maladaptive' behaviours through exercises, 2. Clinics run by doctors take a biomedical approach and experiment...

As I understand it, the MEA fundraises for it's general running costs and for research. The part of it's funds dedicated to research is called the Ramsay Research Fund, so if someone donates for research it will go in that fund, and if they donate to 'the MEA' it will go in the general fund. I...

I find it odd that the questionnaire is only to be answered, and therefore commented on helpfully, by people who have attended specialist clinics in the last 3 years. Given that the NICE guideline was published in late October 2021, ie less than 3 years ago, that may include a few who attended...

I forgot to comment on these questions. They should not be there. As we know, there is currently no explanation of what causes ME/CFS. We know for some people it's triggered by an infection, and that exertion makes symptoms worse and can trigger PEM. We don't know why. If clinics are giving the...

That assumes the pwME has sufficient knowledge to assess whether the information they were given was accurate and up to date. Given the problems with some of the BACME materials, this is highly questionable. How is the pwME supposed to answer this? Combining these on one question is unhelpful...

I assume these are intended to find out whether the clinics are following the NICE guidelines. Which is OK, but I think it should also include something to explain to participants at the end of the survey that some of these are asking about things the clinic should not be doing. A previous...

Still using the 'baseline' terminology' unhelpfully. And an assumption that at baseline one has no or few symptoms. Not my experience, and I suspect not the experience of many, especially those more severely affected. I think it's insulting/harmful to write a survey that suggests there is such...

Symptom contingent pacing is not pacing up. Symptom contingent pacing, as I understand it, is pacing guided by symptoms, both immediate increases in symptoms and using past knowledge of our bodies reaction to exertion and how much we can do with increasing symptoms without triggering delayed...

17. What interventions did you receive? (tick all that apply) Yes No Tests (or referrals to another service) for other conditions Tests to make or confirm the ME/CFS diagnosis Explanation of the physiological causes and impact of ME/CFS Explanation of the psychological causes and impact of...

I guess most of us won't be eligible to do this one, as we haven't 'received treatment' for our ME/CFS in the NHS in the last 3 years. Given that there is no treatment for ME/CFS, that means nobody. I gues they mean people who have been to specialist clinics.

Thanks, here's the introductory page: Developing a Clinical Assessment Toolkit for People with ME/CFS and Clinical Services. Stage 4: Patient Reported Experience Measure for ME (PREM-ME) We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also...

Can anyone link to the survey, please.

Radio 4 Today program this morning from 40 to 46 minutes, a moving interview with Sean O'Niell https://www.bbc.co.uk/sounds/play/m002197x