Sunday, February 20, 2011

PACE trial: vague criteria and poor assessment

othersideofvenus, 18 February 2011 11:27AM:

I took part in this study, and was randomised to the GET group, and I'd be very sceptical about its results.

My initial blood tests showed some signs of infection and inflammation so I was sent for another set which apparently didn't, so I could be accepted into the trial. The assessment/criteria forms which had to be filled out at the before and during the trial, did not mention symptoms after exertion or delayed onset fatigue, there was very little attention paid to pain and cognitive/mental issues were very blurred.

At the start of the trial, I had to wear an accelerometor thing for a week, presumably to measure activity levels. But at the end of the trial, this wasn't repeated. The fitness tests measured the number of steps I could do in a set amount of time, but paid no attention to the fact that I usually couldn't walk for 2 days after these assessments.

The 'handbook' I was given contained an incredibly flawed model, which GET is based on, which basically goes 'felt a bit ill - led to resting too much - led to deconditioning - led to the ME/CFS symptoms'. This completely ignores the fact that the vast majority of people don't rest early on and carry on pushing themselves despite severe pain and fatigue.

I would suggest that the criteria were so vague and the assessment so poor that a majority of the people who recovered using GET never had ME/CFS in the first place.


Anonymous said...

Thanks for sharing your blog, all this PACE rubbish is such a nightmare and just adds to the suffering of people like me, who have severe ME. Its nice to read a more accurate account of how crap PACE really is.

1lito said...

<3 Best wishes. Thank you for sharing <3


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