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Link is: http://www.europarl.europa.eu/doceo/document/E-8-2017-006901_EN.html?redirect Link is http://www.europarl.europa.eu/doceo/document/E-8-2018-004360_EN.html?redirect This one didn't work. Edit - but I found this - http://www.europarl.europa.eu/doceo/document/E-8-2018-006124_EN.html

.....and the previous labour government. Both Labour & the Conservatives have played their part in this. I think going back to the 80's when Wessely was searching for his niche, he was cute enough to align himself with the incoming ideological trends.

Even if I were well enough to sing in a choir, even if it did me good, it would undoubtedly be pure torture for everyone else.

I think you can be forgiven for being a bit unclear about AfME, their status and aims. They spent much of the past giving one impression while actually doing something quite different. They say they support biomed research for ME, yet continue having very close ties with BACME and others who...

In my own case it seems to be down to problems with absorption. It predates the ME by a long way. I have problems absorbing other trace elements too. Unfortunately, I cannot tolerate most iron supplements. My diet is good (and I have done a lot of work on it over the years).

I've answered no, because although my nail beds can go a little blue, I am nearly always borderline, if not actually anaemic. So, there is a probable explanation in my case, I think.

This is not true in my case. Since being diagnosed with ME, I have had to have a lot of dental work done. Like most of us I can't handle locals containing adrenaline, so my dentist uses an alternative local anaesthetic without adrenaline. My dentist is always very concerned about keeping...

I agree @Barry it is quite possible that for some this "mental processing" part may be at fault. However, just because it's possible that this may be true for some shouldn't then just be extrapolated to apply to all. This is where the problems start. Where is the science behind such...

I think many of us are careful to specify our concerns are with PACE -style or prescriptive CBT rather than the supportive style offered to other, non ME patients. I can see that using the words "fear avoidance" would be clearer.

That's horrible @andypants. It just goes to show how the "stress" card allows the medical establishment to ignore high levels of pain and suffering, seemingly without a qualm. Even without the fatalities, how many are abandoned to live out their lives in unnecessary pain?

just to highlight the dangers here - a relative had gut problems most of their life and much of it was put down to stress. As was a stomach ulcer. So when their symptoms became quite bad they didn't complain or do anything about it. Then they dropped dead. It turns out they had been having a...

Completely agree. At one point, many years ago, I was advised to keep an activity diary that also recorded symptoms and their severity. It not only became a burden to complete, but it was also very dispiriting. It felt like I was continuously having my symptoms and limitations rubbed in my...

This phrase has caused me bother in the past: i was being assessed. The assessor probably thought it was a nice gentle chat, to me it was like a gruelling mental workout and about an hour in she says something along the lines of: "If rest doesn't alleviate symptoms then why rest? Surely...

I vaguely remember that the % of PACE trial participants in employment (or possibly % of hours worked) dropped while there was a slight increase in those on benefits. I seem to recall that when this was raised the PACE trial authors claimed this wasn't an objective measure because of possible...

I'm not sure we can say anything at all about anyone who reported improvement because of the way the trial was designed and run, plus of course the as campaign newsletter mid trial. All one can say is given the inherent built in bias the only surprise is that the results were so poor...

That seems like quite a handy summary. Helpful to show to doctors and or family or friends who want to know more.

An aside & a nitpicking one at that - Do we know that this is true? I seem to be on a gradual downward trajectory and I know of others who have similar experiences. Of course, some of that might be to do with aging. I do know some people who, temporary fluctuations aside, seem fairly...

AfME also had a member survey - I can't remember when now and if I recall correctly the responses there demonstrated harms from GET too.

I found that actually stopping and resting takes much more self discipline than any exercise regime, sports training or study plan ever did. Apart from the attempt to smear our collective characters, I don't know where this idea that we will all fall into our beds the moment someone stops...

So, it sounds like the bottom line is that even for pacing there has been insufficient research and follow up to identify what works and what doesn't etc. Indeed there isn't. Additionally, what you might need in terms of effective pacing might well change as your illness progresses, depending...