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Someone who knows the diagnostic criteria, is qualified to test for and exclude other possible causes for the symptoms and has done this more than a couple of times in the past.

By clinically confirmed I mean by an expert clinician and according to an official case definition, as is the case in most research studies. Not a GP saying he thinks you might have CFS.

Apologies if I gave the wrong impression. I did try to explain in a further post. The prevalence of self-reported ME/CFS in studies is usually above 1% and I think that in some (like in the one Medfeb cites) this was true for patients who said that they were diagnosed by a clinician. It's weird...

What about the risk of picking up wrong signals, signals that have little to do with clinically confirmed ME/CFS?

Not really, I tried to be careful in how I worded it. It's about a potential difference with the way ME/CFS is defined in most research. Most ME/CFS studies focus on patients with clinically defined confirmed ME/CFS. So patients did not simply fill in a questionnaire, they saw a doctor who...

I'm not sure if they used it in this way. What we would need is a % of patients diagnosed solely with the questionnaire who's diagnosis of ME/CFS was then confirmed after clinical examination. I've could have missed it but I don't think they have published about this. Don't want to be too...

This all looks great. Wonderful to see collaboration between researchers and patient involvement. Thanks to @Simon and @Andy for their work on this. One thing that worries me a bit is whether the questionnaire will be accurate in selecting patients with ME/CFS. I hope there will be a...

I tend to have more energy after a meal while most healthy people seem to experience the opposite and feel a bit fatigued. Not really a dramatic effect, but perhaps this is similar to what you mean Strategist?

? The paper cited (by Peter White's group) reads: "Annual incidence rates for CFS/ ME diagnoses decreased from 17.5 (16.1, 18.9) in 2001 to 12.6 (11.5, 13.8) in 2013 (annual percent change -2.8% (-3.6%, -2.0%)." So where does the 75% figure comes from?

Thanks for your comment. I think the example of AIDS, while interesting, is very much the exception rather than the rule in medical history. I think opinions differ on what exactly made the AIDS patient movement successful. It had an inside/outside strategy. In my non-expert view, it was a...

Thanks for your comment. I think the example of AIDS, while interesting, is very much the exception rather than the rule in medical history. I think opinions differ on what exactly made the AIDS patient movement successful. It had an inside/outside strategy. In my non-expert view, it was a...

I think it was this commenary: Sharpe et al. (2017) Do more people recover from chronic fatigue syndrome with cognitive behaviour therapy or graded exercise therapy than with other treatments? https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1288629 Where they write: "a review of the...

No not yet, but perhaps it's still a bit early. I've only sent it on Sunday. I suspect if they were to take it seriously and discuss it among ME Action staff, it would take longer than a couple of days to give a response. But I will keep you informed.

I really hope it gets reinstated. Now that this is brought up I've been meaning to ask the following: Are there any official documents about the earmarked allocation to ME research in the past or the mechanisms that allowed this? In Belgium, I keep getting the response that's not how research...

I see. I think that's the way to do it because from reading the comments it seems like patients were given very different treatments under the same name. Some people said CBT helped them to accept the illness while another said “CBT encouraged me to stop thinking of myself as having ME and a...

Thanks for the clarification @Gecko, very helpful. Will adjust my text to avoid confusion. Perhaps that explains why there was so little difference between maintaining versus increasing activity levels while feeling ill: at the very beginning when patients aren't sure yet whether they have...

I can't speak for him but I got the impression from watching the video that he meant fundamental research into mechanisms that could account for symptoms and disability as seen in ME/CFS. So instead of starting with ME/CFS patients and trying to figure out what mechanisms are defunct, one...

Pretty impressive that you guys got this done in such a short period of time. You really put the Action into ME Action! Thanks also to Tom Kindlon for highlighting the responses in the appendices. Here’s my view/summary of the survey. Pressure to undergo certain treatments The most striking...

Brian Hughes and buffet included! That sounds like a recipe for succes. Whish I could be there.

Thanks @Cheshire I hope the situation in France will improve, it sounds awfull.