Charles Raison (part of CDC CFS "team") on PACE Trial

[Dolphin]

This came up on the PACE Trial thread. As I didn't want the discussion to get side-tracked, I thought I'd set up another discussion.

One can also post comments on the website which might influence him (if that's what you want to do):

http://pagingdrgupta.blogs.cnn.com/2011/02/23/mind-body-inside-chronic-fatigue/?hpt=Sbin

Mind-body: Inside chronic fatigue
Dr. Charles Raison, CNNHealth's Mental Health expert and an associate professor of psychiatry and behavioral sciences at Emory University, writes regularly on the mind-body connection for better health.

Every Wednesday afternoon for the last 10 years Ive slung a government ID badge around my neck and walked up to the Centers for Disease Control and Prevention, where I set aside my identity as a psychiatrist who studies meditation and take on the role of guest researcher in a group of scientists charged by Congress with studying chronic fatigue syndrome, or CFS.

 

[CBS]

Coming from a guy in my position, Raison's position is self-serving, short-sighted and dangerous self-stimulation:

The findings were clear. The patients who challenged themselves to improve their condition within the context of CBT or graded exercise got much better on the whole than did those who accepted their disabled fate and tried to live with it within the guidelines of the adaptive pacing therapy. If you’ve got CFS you’ve got to fight for your health by pushing against your pain and exhaustion to get in better mental and physical shape.

Patients did not get "much better" on CFS and GET. Whoever they were (they sure don't look like ME patients to me), they had marginal improvement but the p values were supposedly impressive because of the size of the (depressed?) sample, not because of the size of the treatment effect.

Go ahead, push yourself. Sometimes you need to do something besides sitting around waiting for the researchers and advocacy groups to do something meaningful. A decade from now when you can't think straight EVER, you can thank Raison, the CDC and everyone else who thought they knew so much about this disease.

I've come to the conclusion that the real danger in ME is that it develops so slowly (yet relentlessly) that small temporary improvements have shaped everyone's perspectives but few, if any, of these "scientists" will follow someone who took their advice over the course of decades. My guess is that the PACE trial participants who weren't simply depressed will be spending their last decade drooling all over themselves, being spoon fed and having their diapers changed and their assess wiped by that cute nurse who's name they'll never be able to remember.

 

[SOC]

I am: intelligent, well-educated, perseverant (even stubborn), and tough-minded. I am not: lazy, complaining, whining, and weak-minded

I WANT to be out and about, working, participating in a world outside my house.

I volunteer to quit my (supposedly unnecessary) Valcyte right now and enter an intense exercise and CBT research study under the supervision of any biopsychosocial researcher who believes ME/CFS is only about poor coping AS LONG AS that researcher will
1) do regular routine tests of measures of health such as CBC, cardiac testing, etc
2) do regular tests of certain tests ME/CFS medical specialists have found to be abnormal in PWCs -- herpesvirus and other infections, immune function tests, etc
3) use established OBJECTIVE measures of functioning -- both physical and cognitive -- and take the data frequently to account for PEM
4) do beginning and end testing of other measures of possible physical abnormalities, such as MRI, to detect permanent/long-term effects of the "treatment"
5) have statistical analysis of the data done by an outside, objective statistician
6) publish EXACTLY AND COMPLETELY the data taken in the study (including the health data) and the statistical analysis of that data

If ME/CFS is a false illness belief, then I should be able to achieve 100% functionality if I dedicate myself to their treatment plan without any other treatments. I don't want to hear anything about achieving the walking pace of a sickly 80yo. If I'm not really sick, then I should be able to achieve, by objective measures, the physical functioning of a healthy person my age.

I understand the risks involved, and I'm willing to take them to put an end to this false illness belief nonsense so that the world can get on with real research.

How about it, Dr Raison?

[off to burn my false illness belief corset]

 

[urbantravels]

I wrote a long screed in the comments to that article, but it apparently got eaten by the comments system and was never seen again. I HATE when that happens.

I may try again. One of these days, I will actually remember to compose longer comments in my own word processor and save them before trying to post them. I've gotten spoiled by the writing setup I have for my own projects where my writing software (Scrivener) automatically backs up to Dropbox on a continuous basis, so I never have to think about saving stuff.

 

[Snow Leopard]

To be fair, he did say this:

But there is bad news on at least two fronts. First, despite all the hoopla this study has gotten in the press recently, none of the treatments worked very well. In fact, only one out of three patients improved with either CBT or graded exercise. This means that the majority of people did not improve, despite all their time and effort.
The second piece of bad news derives directly from the first, and that is the fact that the best treatments we have for CFS and related conditions are completely non-specific, which is probably we they don’t work so well. After all, increasing our sense of mental control through CBT and our physical fitness through graded exercise would probably help most of us. Compare this to an antibiotic. If you are well an antibiotic does nothing. If you are in mortal agony from a bacterial infection it saves your life.

To bad he never read the protocol and noticed the changing of the goalposts.