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Among the things I would would like to know: Names and experience of clinicians Names and experience of employment advisors Numbers of ME patients. Who diagnosed the patients and what criteria did they use? Ages of patients How long had patients been ill? How severely affected? How many...

They say that the toolkit is based on the evidence, experiences and outcomes of the SEE M.E. service. Data please.

Also, it doesn't seem to mention anywhere that once the "client's" confidence and self belief has built up to enable them to tackle the challenges of returning to employment , they may well/are likely end up far more severely affected later on. And this is supposed to be a charity working for...

Some good comments below the article. This continually fighting over every tiny scrap of care that people need is so counter productive. Especially with conditions where the effort involved in trying to deal with the authorities exacerbates the underlying condition. Ultimately, it seriously...

Sorry to be so negative, but based on some of the guff they've come out with before.... This just makes my heart sink. Edit - had a scan - reminds me of IAPT - a person's clinician and employment advisor in close contact about you. Although it acknowledges in the front that "some" people...

So, by this logic, do you agree with Wessely, Sharpe and White that ME/CFS is a psychological condition? I'm afraid I find your summation of the qualities of various professionals and the reasons they might be drawn to their chosen fields very oversimplified, @Hip. Some people, such as...

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...