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Thank you, @dave30th.

It is not clear to me whether this survey is intended as a research project to find out whether UK clinics have been implementing the NICE guideline, and/or for future use as part of the package of multiple PROMS to help clinicians care better for each pwME, and/or for service evaluation...

We have had many discussions of BACME on the forum. See this thread if you want to read or say more about it: United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

The announcement linked on the opening page of this thread says it was funded by the MEA. There's no mention of the Ramsay fund. ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services May 8, 2023

I think the MEA normally have a good record on funding biomedical research, so I wouldn't dismiss them altogether. I wonder whether this project, since it's not biomedical, may have been funded from the general MEA funds rather than the research fund. I don't remember seeing documentation on this.

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...