Tuesday, September 27, 2011

How ME patients can increase their exercise tolerance

Picture kindly supplied by HR.

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise 
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME 
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients See also: PACE trial's Prof Peter White: Exercise causes Immunological damage in Chronic Fatigue Syndrome and is NOT safe
See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC

1 comment:

Lisa Petrison said...

Dr. Speedy,

I have been spending a great deal of my time recently making an extensive written case against the PACE study and the use of GET in CFS.

For instance, here (starting on page 20) are summaries of more than 50 studies showing the various sorts of physiological damage that people with CFS can experience as a result of exercise.


Exercise intolerance is such a core phenomenon of the illness that a team of researchers at the University of Utah have been given a $1 million NIH grant to extend and confirm their work on changed gene expression after exercise in CFS, in the hope that it indeed will be a reliable biomarker for the illness.



So in one sense, I am wholly supportive of what you say.

On the other hand.....

Many of those of us who have pursued Erik Johnson's "extreme mold avoidance" have found that our PEM goes away as a result.

This is how Erik got to the top of Mt. Whitney for 10 years in a row. He also does activities such as riding his bike around Lake Tahoe and kayaking.

Erik was chosen by Paul Cheney as one of prototypes for what the CDC named "CFS" in the Tahoe epidemic in 1985. He later was confirmed by Dan Peterson as still having CFS (with an anticipated strong response to Ampligen) in 1995. He was included in the 2009 WPI XMRV paper, and Judy Mikovits agreed that he did have the disease.

So I think it's hard to suggest that he was misdiagnosed. And yet -- he made his exercise intolerance go away, consistently, with a concerted plan.

This, as it turns out, is not a fluke. My own CFS was classic, with severe PEM. Toward the end of the worst part of my illness, I was curled up in ball in a dark room for 22 hours a day. After a period of concerted mold avoidance, I was exercising vigorously too (including on occasion at 9000 feet).

In some cases (such as Erik's), this effect has taken some time to kick in. In others, such as one person who (with the help of her husband) went tent camping with all new things in Death Valley, it's been a lot faster. She was housebound and fading fast with wholly classic ME/CFS (and XMRV+) in her house in Wheeling, WV; within one day in Death Valley, she was hiking all day every day, plus doing some swimming and beer drinking.

Now -- perhaps you're right that without PEM, people don't have CFS.

If that's the case, it means that mold avoidance (at least in some people) makes CFS go away.

At the very least, it takes away the core symptom.

And considering that that's the case --- shouldn't researchers be trying to figure out why that occurs?

Thank you very much for writing this blog.


Lisa Petrison, Ph.D.


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