MAY BE REPOSTED ME ASSOCIATION SUMMARY AND STATEMENT ON LO et al PAPER:

[Dolphin]

Only in the late 1990's did doctors in the UK start to claim ME could be cured with CBT/Exercise, before that they just ignored you. It was better to be ignored, safer too. Now they want us in psychological rehabilitation clinics and phone our houses when we don't attend one. Indeed, the UK government threaten to take aware social welfare payments (that pay for food/heating/lighting) unless we attend.

I agree with that. I'm in Ireland and we're ignored here generally. I prefer what we have to what you have for the reasons you give (and others i.e. these clinics also go on and do education so can have bad knock on effects also).

The ME Association (and other influencial charities) never took on a sustained criticism or rejection of CBT, they never exposed the lie all over their website. They just shrugged and said well, if it helps some people with CFS, whatever. All to the massive detriment of people with neuro immune disease, people who now realise they have XMRV/MULV. People who never were going to be 'managed' or cured with CBT, and who would always be blamed, relapse, and look foolish when failing to recover with CBT....Further damaging already fragile relationships with their doctors.

Maybe they should do more. But Dr. Shepherd has had some letters etc published on this, challenged the NICE guidelines, etc. There is an estimated 200,000 patients in the UK - some others could also write letters to journals directly (or try to people close to them who might be capable), etc. But don't. The hype of CBT and GET could be challenged with letters, reviews, etc. But generally hasn't been.

 

[Sunshine]

This all plays into the hands of the psych's in the UK.

XMRV + ME/CFS patients are too frightened to go to newspapers and give their names

Even if they did though, no one would print the article!

 

[Dolphin]

This all plays into the hands of the psych's in the UK.

XMRV + ME/CFS patients are too frightened to go to newspapers and give their names

Even if they did though, no one would print the article!

I didn't even get to finish one degree because of M.E. but I've had letters published in medical journals.

But to do it, one really needs to start reading full research papers. Which takes a bit of dedication.

 

[Sunshine]

Yea exactly, and it takes brain function as well as dedication and we don't have that. As you know this disease affects cognitive function as well as pure energy alone so we cannot 'think' without great diffiuclty, to read articles and manage a response to give to someone. This in combinaton of the fact most people are not scientists or even took science subjects at school with any particular flair means we're all starting on the back foot.

Such a huge mountain to climb, and that's for people who can manage a PC and keyboard so many can't even do that, or even manage to read at all.

 

[Dolphin]

Yea exactly, and it takes brain function as well as dedication and we don't have that. As you know this disease affects cognitive function as well as pure energy alone so we cannot 'think' without great diffiuclty, to read articles and manage a response to give to someone. This in combinaton of the fact most people are not scientists or even took science subjects at school with any particular flair means we're all starting on the back foot.

Such a huge mountain to climb, and that's for people who can manage a PC and keyboard so many can't even do that, or even manage to read at all.

Maybe. But some people seem quite capable of following the news etc on XMRV etc. I think there are people out there who could challenge the hype of CBT and GET if they put their minds to it.