The PACE trial has taken its hits – plenty of them but it’s never taken a hit like this – a full blown critique by the head of a statistical organization.
With it’s publisher Lancet still deflecting inquiries the PACE trial is still alive but one wonders how much time it has left
Don't Miss Another Blog!
Like this blog?
Make sure you don’t miss another one by registering for our free ME/CFS and Fibromyalgia blogs here...
THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.
Please pardon the vitriol, but I swear to freaking god I would sue Mayo’s *ss had I spent the 30k cash on their graded excessive program as recommended to me (last August) after they diagnosed my CFS. I am utterly outraged that the MAYO CLINIC still subscribes to Pace’s utter Bull**it. They are smarter than that, and more compassionate than that, and I want to know when someone will finally address this publicly with them!
Rachel—David Tuller here. Can you contact me about your Mayo Clinic experience? I’m at: davetuller@berkeley.edu
I had essentially the SAME experience as you, even to the point of leaving with the intent of returning to the ME/CFS clinic. The idea of making ME/CFS patients sit in a classroom setting for 8 hours a day was insane. The PACE approach was just plain wrong for me, too. Obviously, I didn’t return. That’s all they had to offer.
Paul, Yes – and the cost is insane. They readily admitted upfront that much of it wouldn’t be covered by insurance because of the billing code and structure. Knowing we are a population who are (largely) unable to produce an income, they should show greater concern for the financial impact. Ultimately, I do not fault them with knowing little about CFS – the fault lies in giving credence to such a flawed and frankly, illogical study as PACE. I would have welcomed a diagnosis accompanied by a suggestion that I schedule an appointment with the experts at Stanford!That would have been the right thing to do…
* oops, I meant graded exercise program. There was steam coming out of my ears as I was typing 🙂
Graded excessive program sounds right to me ☺
haha – on second thought, I sort of thought so too 🙂