Katie Couric is supposed to be doing a report on ME/CFS tonight on the CBS Evening News. The community is worried b/c the scandalous PACE trial of CBT and graded exercise, run by UK psychiatrist Simon Wessely, who has been promoting ME as a psychological problem of “aberrant illness beliefs” for twenty years, just made news five days ago.
We are trying to bombard CBS with messages about the danger of graded exercise and its ineffectiveness as a treatment for those with ME/CFS, and the clearly infectious nature of the illness. Below is my letter to Katie Couric. I think I’ve reached my typing limit for the day now.
Dear Ms. Couric,
I heard that you are going to do a story on ME/CFS tonight and wanted to send you a message about my experience.
I developed ME/CFS in 2004, when I was 28. I was standing in my kitchen chopping carrots for dinner at 5:45 on May 29, 2004 when suddenly all the energy drained out of me and I grabbed on to the counter to keep from collapsing. My energy has never returned.
I did not have a doctor with experience with ME/CFS, and so nobody told me that it was vitally important that I not push myself beyond my limits of exertion. I pushed the energy envelope and by July 2006 was no longer able to commute to my job. By Christmas 2007 I was bedridden and I remain so to this day. This is what overexertion can do in ME/CFS. If someone had told me at the start that I needed to absolutely rest, I would likely not be as sick as I am now.
I have a good doctor now – Dr. Paul Cheney, a genius researcher and clinician, in Asheville, NC. We have to take me there lying down in the back seat of my mom’s SUV, as I cannot sit up for more than a few minutes at a time.
The PACE trial, which has recently made news, is so potentially dangerous to ME/CFS patients, if it encourages them to push their limits as I did. Simon Wessely has been promoting his belief that ME/CFS is a result of “aberrant illness beliefs” for 20 years now.
Here is a better study that shows how dangerous graded exercise can be in ME/CFS:
Here is way more background from Hillary Johnson, author of Osler’s Web, which is in the mold of And The Band Played On.
The treatment we’ve received at the hands of the CDC is just as scandalous as what AIDS patients received in the early 80s. Ms. Johnson can tell you all about it.
Dr. Cheney, who has dedicated his life to ME/CFS since the Incline Village outbreak that happened around him and Dr. Daniel Peterson in the early 80s, said on a 2007 panel, “The whole idea you can take a disease like this and exercise your way to health is foolishness. It’s insane.” Please listen to him, and not a psychiatrist who admits he doesn’t believe in the illness.
That’s a very good letter, well done.
Thanks, Claire. I can’t often manage a lot of scientific writing as you seem to be able to, but a personal story is a contribution too.
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Excellent letter Jocelyn. You do wonderful writing
on the blog.
❤ Best wishes. Thank you for sharing<3
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