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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mayo Clinic Minnesota and POTS

dancer

dancer

Senior Member
Messages
298
Location
Midwest, USA
Here's what they currently list as treatment for CFS on their website:
"Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines psychological counseling with a gentle exercise program.

  • Graded exercise. A physical therapist can help determine what types of exercise are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day.

    If you're exhausted the next day, you're doing too much. Your strength and endurance will improve as you gradually increase the intensity of your exercise over time."
It infuriates me because the LIE of that last sentence is what made me much worse. It seems to me that the core of CFS is that your strength and endurance DO NOT improve. That feels to me like a core pathology of the illness. I've tried to "gradually increase the intensity of exercise" and lost more and more ground. In my early years of the illness I read these recommendations at the Mayo site and the CDC, and then felt like a failure when their promised improvement didn't come. Now I understand that it is their poor recommendation that is the true failure.
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
@dancer I read those, too, and when I was first diagnosed I thought it was so encouraging because it sounded so doable. But it never worked. Actually I had tried that before being diagnosed and it hadn't worked then, either, but I just needed something to work.

There was no attemt at explanation that came with my diagnosis, and at that time the CDC said all research had come to dead ends. I had to read the literature for myself to find what ideas were being looked at.

But at the time, with no reason to be ill and only a vague label, I assumed I would get well with the right self-management.

When that didn't happen, I also felt like a failure.

Now I know better so I can at least argue intellectually against my feelings.
 
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