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
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PDFA Run For His Son: An ME/CFS Parent Steps Out
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone
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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 🙂