The PACE trial has been going on for a long time. I am fairly newly dx with ME so it’s all a bit new to me. But some personal background might help.
I became ill 10 years ago. It was November 2003 when I was admitted to hospital because I could no longer walk and was in immense pain, confusion and general severe yukkiness. I assumed it was linked with my pregnancy but my Obstretitian begged to differ. He asked the Neuros to give me an MRI and have a good look at me.
And thus began my bizarre Kafkesque adventure with neurology.
I remember lying in my hospital bed, feeling pretty rough and just a little concerned about my unborn son, while two registrars stood on either side of the foot of my bed arguing. On the left was the OB Reg and on the right was the Neuro Reg. The arguement was over whether I was going to get an MRI or not
The Ob Reg won. I don’t know how or what happened in the office later, but a couple of days later I was wheeled over to the other hospital and got the MRI.
It went missing.
Long story short. I didn’t get a dx and once my son was born I was told to exercise, pushing a little harder each day until I got better. The Neuro promised me I would get better.
So I did the exercise, every day.
I went from being able to walk with crutches or the pram to keep me upright, just about around the block, to not being able to walk a few paces from my own house. I can’t even walk around my house without walls and furniture to assist me. GET not only failed me. It made me a lot worse.
And I have discovered I am no the only one. It’s a common result.
The deterioration rates for GET and CBT are not only not published, but a Freedom of Information request has had to be put in to get them. The FOI was granted and an appeal against revealing the info has now gone in. YOU COULDN’T MAKE THIS STUFF UP
As it happens other countries where studies into GET/CBT have been done have shown it doesn’t help
In case you (like me) haven’t quite understood what is going on, these three short,clear and funny videos should help. I believe the talented author is making a 4th installment with further details.
The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.
Average scores for healthy adults approx 95+ (various studies)
Class 1 chronic heart failure 79
Rheumatoid arthritis 62
Dialysis patient 50