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I never really understand how one can use Fukuda when PEM, being a hallmark and cardinal symptom. But out of the 1400 participants, 69 Fukuda, and then again 61,5 Canada if 89% of the 69 experienced PEM.

It is possible that a program of many hours of playing Monopoly in an elevator while listening to Adele singing “Rolling in the Deep” over and over could have produced the same effect. Dont give them these ideas @dave30th. They may be funded in Norway.

We have no evidence base that says that preventive resting is good for ME. We know that activities can provoke symptoms but that does not tell us about the best long term strategy. This may be a little theoretical, - words and terms, but we do know how important words can be. Preventive...

"By promoting GET/CBT as the only supposedly evidence based treatments, GP's assume that it's a psychosomatic condition and either offer antidepressants or pwme are being diverted off to therapist run clinics and may never even get past first base in trying to get consultant level diagnostic or...

«Evidence-based medicine is driven by the effort to minimize medical risk. In the area of ME/CFS, however, it has long been routine for psychosomatic research to proceed as if medical risk can be ignored, as if it simply is not possible that patients with this poorly understood condition are...

Hopefully your right, but not sure that even peers experiences will make them understand that this could happen to everyone (them included). People in general are probably thinking this could not happen to me, a hundred times that when it comes to doctors. But do think that surgeons and other...

Quiet a dark episode with N. Speight, describing cases of children, the snakes and ladders. One step ahead and two back. That is exactly how it is experienced. Some things are moving in the right direction, but facing extreme resistance. More progress, more resistance in way of actually gain...

The article is quite good. Nice to actually have someone knowing what they are talking about, not speaking of Stubbhaug. At first I wonder what kind of patients that can cope with the program- in itself it screams - not suited for ME-patients. A patient attending this will have serious...

Haha! Nice story, a thing of beauty

Like patients not recovering, even deteriorating haven’t tried enough and don’t know they’re own best? Anecdotes. Always so easy, missing all complex factors that can impact on recovery. Good for him, but not very helpful.

It is scary that you can get it so totally wrong, - ME = some sort of fatigue? Its a little like approaching a dart board, turn away 180, then throwing..The world of different sorts of fatigue has very little to do with ME. The approach is at best an act of negligence. My speculation is as...

It fails from the start labeling ME as some kind of fatigue? From there on everything sort of fails. It is not true that we’ve had “decades of dedicated research into the pathophysiology of ME/CFS”. We have had some dedicated people, yes, but no funding, no way near what is needed for...

Yes, language and terms are important. The propaganda that the mechanic view on body and soul, the distinction between psyche and soma is an anachronism, is of course right. Very few would disagree on that. That is not a problem for ME-patients. What is plain wrong though, is when these same...

Interesting. Semantics is always interesting in the world of ME. I always find it kind of sad reading studies that has to underline the obvious, - that the disease is something completely different than deconditioning, of course it is. Reading such always thinking, we are way beyond this...

Ignore them totally. Let them just speak together in they’re echo chamber.

Ok, thanks. And wow. Know PACE as presented and trial 2011 to date, but wasn’t aware of afME close relationship to both governments, PACE investigators and insurers. But should have known, -cause how could you set up that kind of trial without support of people you “control”?

A good article. The consumer term is very odd. Action for ME on pacing is bad. I’m not familiar with this action for ME and how they actually worked and opposed PACE in the initial phase, if at all. But it’s a shame they wasn’t up to par and did better in the early phases. It may not have...

Let’s see what this will be, but if you’re about right in your predictions, which I find reasonable, then it’s good night to mankind. But I really hope this piece draws attention way beyond the ME community and engages scientists, media and all kinds of people all over the place. Great read...

Well done @dave30th. Keep up the important work! I figure this is good for the world see. Let people outside take part in this mess. At first it can be hard just to sit back and let it sink in, but ideally I hope for no response or just a tiny one.

A good listening and well done BBC Scotland. C Shepherd and C Monaghan tells us what we know so well and have heard a thousand times. Hopefully outside people get insights to ME and the many challenges. Interesting listening to Stuart M, which I thought was very clear and tells it like it is...