Thursday 24 February 2011

Osler's Web author lambasts PACE trial

A brilliant post from Hillary Johnson on the PACE trial. She includes a wee Lancet video of Chalder discussing GET. Nice to see in the comments thread that Americans are so angry on our behalf!

And a petition to sign if you feel rage at Action for ME for supporting this bogus research in the first place.

Update*. Frightening to see that the PACE nonsense is already being invoked by pretend doctors (Dr. Fred Gill) overseas as good news. At least he was balanced out by real doctors (Dr. Harvey Alter and Dr. Shyh-Ching Lo).

Update** I shouldn't google any more on PACE, it is actually making me ill. Do we now live in a police state where the CBT and GET militia are coming to get us?

Update*** ME and the insurance industry and how the Oxford Criteria came about. And how 'CFS/ME' doesn't actually exist.

2 comments:

Digitalesse said...

I believe that most PWME find their own level of activity and find their own way of increasing their activities as their symptoms reduce in severity over time. The problem is that the process is very, very slow and the improvements in our health can be so small and incremental that an outsider would barely notice. We can't be forced into recovery.

My experience with *that* clinic, as I said before, has been nothing like their reputation would suggestI've had a fantastically supported CBT therapist. There's been no GET and the CBT consists of lifestyle management which is more like occupational therapy. Overall, my experience has been positive.

The problem with my experience is that if I report it as 'helpful' then it will be seen as evidence that 'this approach works'. My version of CBT has consisted of adding rest periods and encouragement to pace myself and slow down instead of pushing against my limits constantly. Someone else with a less sympathetic therapist may be encouraged to do more than they are able to and then they're told off because the evidence shows that *their* approach really works and the evidence supports it. So, I'm not too convinced that when people are talking about GET/CBT they mean the same thing.

nmj said...

'I believe that most PWME find their own level of activity and find their own way of increasing their activities as their symptoms reduce in severity over time. The problem is that the process is very, very slow and the improvements in our health can be so small and incremental that an outsider would barely notice. We can't be forced into recovery.'

That's the truth, Dig, but they want to zip us from A (bedridden) to Z (gymnast) by using therapies that treat us as psychiatrically ill. They refuse to accept that resting and pacing are crucial to our recovery and survival.