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The paper seems to be based entirely on data from the rare monogenic EDS type (1 in 5000 people) and the equally rare Marfans syndrome. Both of these are known to include structural and connective tissue differences from normal. I can understand that these lead to OSA among many other problems...

It doesn't look like anything new. It looks from that diagram like all the usual list of possibilities we have discussed on this forum, none of them yet shown to be the root cause of LC or ME/CFS. It looks very much like yet another person using their own ancedote for personal gain. Seven...

Very good, Adam. Thank you for your work.

Have you read our PEM fact sheet? PEM is not just worsening of symptoms.

I don't think a walking test allows running. If it were me thinking of taking part I would only do so if they were doing serious follow up of symptoms and functional capacity for at least 2 weeks before and after the 6 minute walk test. And preferably giving participants wearable step and...

Thanks @Turtle, I had completely forgotten I had asked what you meant and the context, so I've looked back and quoted it. I understand what you are talking about and agree with your analysis. I think I was just confused by the brevity of your question, not sure who you were saying was doing the...

I just had a passing thought and this seems like as good a place as any to dump it: The only reason pwME need any social science research is to try to undo the harm caused by bad social science research.

I don't have the capacity to read back over this discussion, so I apologise if I am repeating what others have said better than I can. I think we need a clearly set out summary of the problem under discussion, the aim of any advocacy action, and the strategies and tactics to try to achieve that...

I think this is an important factor in whether it makes sense to go through the whole ethics approval process in order to collect data and the questions you ask in the questionnaire and your aim with the study. If, for example, the course is on statistics and research methodology or similar...

Or maybe the niggles are triggered by hassles.

I didn't see the questionnaire before you took it down. If you are going to ask people about their ME/CFS symptoms it would probably be a good idea to use the NICE guideline list of core symptoms and other common symptoms of ME/CFS rather than trying to think them up for yourself or basing it...

Would it be feasible for an undergraduate project like this to simply ask people not to reveal their real name. So they would fill in the questionnaire on a something like survey monkey, using a pseudonym of their own choosing. Does that get around the ethics problem? I assume there would not...

On the AfME website: https://www.actionforme.org.uk/campaign/overlapping-illness-alliance/

This is the MEA, presumably Dr Shepherd, answering a question about comorbidities in 2023 https://meassociation.org.uk/medical-matters/items/what-are-co-morbid-conditions/

Maybe a starting point is to collect information on what each of the main UK ME/CFS and Long Covid organisations are saying about comorbidities, and of course other countries as well if members involved in this discussion can contribute information about their local ME/CFS organisations.

That may be more true of MEAction USA than MEAction UK.

Isn't that true for ME/CFS as well? Except we don't get pills we get told to exercise. I don't think any of the few doctors I've come across believed ME/CFS was real, apart from possibly one about 20 years ago who signed me off for ill health retirement but spoiled the impression of being...

Why is it the fault of the patient if they believe their doctor, who they have learned to trust and rely, on tells them they have a named syndrome or disease? If a patient came to you whose GP had told them they have rheumatoid arthritis, and you do whatever you do and tell them you disagree...

Are their rheumatologists who would say exactly the same about the 'quacks' who diagnose ME/CFS on the grounds that there is no good evidence to support it as a useful clinical entity, and for which there are diagnostic criteria ranging from Oxford to ICC and with prevalence anything from 30%...

BACME in the UK are still doing it. They are telling pwME inaccurate biological explanations of ME/CFS, and claiming the strategies they teach like sleep hygiene and stress reduction and pacing up are directly effective at stabilising and then improving the underlying illness by addressing these...