Missing More is a series of posts sharing patient experiences of ME and exercise. If you would like to contribute your story, see this post.
The main defining feature of ME is a delayed reaction to exertion. This can include dramatic worsening of symptoms and is not the same as just being tired. Mary Schweitzer describes her experience of attempting to do simple exercise two days in a row:
I live in the US. I was never prescribed graded exercise therapy but I had an experience with an occupational therapist that is germane.
I was mostly bedridden when I went on the experimental drug Ampligen in Feb 1999, and I did well on it (plus my immune biomarkers returned to normal and my viruses – some of which were active in my spinal fluid – became dormant. I thought I was cured and went off the drug in October 2000. I was doing well but was not 100% of my old self – using the Karnovsky disability scale, I was a 70 where 100 is normal and 0 is dead. When off Ampligen in relapse I return to a 30 on the same scale.)
My insurance company sent me to an occupational specialist to see if I could go back to work. She had me run through a sequence of simple tasks – walk up and down five steps, kneel, sit and copy something by hand, then copy it on the computer, walk a little bit – it was very easy and I was as confident as the therapist that I was OK.
But then she had me come back the next day.
It was MUCH harder the next day. Halfway through I blacked out. I woke up to her nudging me with her foot and saying, “You have to go home now.” I mumbled “emergency number” and she called my husband, who got me home. I could barely walk. One month later I had a full relapse and had to go back on Ampligen.
I’ve never had two-day Cardiopulmonary Exercise Testing because when I’ve had them I was quite sick. I’ve had several. My score is always in the dangerous range (a 15 or 16 by the way Stevens and Snell score it, but it’s not consistently scored that way in all practices so I’m not sure whether the numerical score has meaning without a chart showing where scores are supposed to fall.) I just know my score is low enough that on the basis of that score alone, when sick off Ampligen I would be rated a severe cardiac patient, eligible for US Social Security Disability (which I already had).
So – I know what it is like to be forced to keep going when you can’t or shouldn’t. I was an awful experience, and it was just two days. The occupational therapist wrote down that I “quit.” Nothing about my blacking out and ending up on the floor, completely out of it, for the entire afternoon.
Also, it’s obviously dangerous to force someone as sick as I am without an immune drug (Ampligen) to do any exercise at all. To repeat, I am in the dangerous range for cardiac activity on one-day Cardiopulmonary Exercise Testing when off meds and a 30 on the Karnovsky scale. Making me do graded exercise in that condition could have killed me. And you can’t “game” the Cardiopulmonary Exercise Testing. It clearly shows I shouldn’t be doing exercise without subjective input.
If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.
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