Margaret Williams writes:
OVERLAP OF ME/CFS WITH POST POLIO SYNDROME
Prestigious papers, for example, Annals of the New York Academy of Sciences 1995 (containing 50 papers on clinical neurology, neuroscience, electrophysiology, brain imaging, histology, virology, immunology, epidemiology, with contributors from the US, Australia, Canada, France, Sweden and the UK) point out the similarities between post-polio syndrome and ME/CFS, notably that the mechanism of the extreme fatigue (called "visceral exhaustion") --is exactly the same in ME/CFS as in PPS.
Dr. Richard Bruno writes:
Post-Polio Sequelae Awareness:
In taking about polio vaccination, it should not be forgotten, as it was 50 years ago, that there are still nearly two million North Americans alive today who had polio during the epidemics of the 1940's, 50's and early 60's. At least 70 percent of paralytic polio survivors and 40 percent of nonparalytic polio survivors are developing Post-Polio Sequelae, unexpected and often disabling symptoms that occur about 35 years after the poliovirus attack, including overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing.
Unfortunately, polio survivors and health professionals are not aware that PPS exist and are readily treated by reducing physical overexertion, "conserving to preserve" polio survivors' remaining poliovirus-damaged neurons, and not by exercising and the "use it or lose it" treatment polio survivors received 50 years ago. Polio survivors and health professionals need to be aware of the cause and treatment of PPS.
* * *
As hard as it may be for those of us now alive to believe, polio is another illness that was once attributed to psychological causes, until someone discovered the virus that causes it, and doctors had to change their thinking to meet the changed science.
Dr. Bruno's book about post-polio suggests that CFS patients had either a mild case of polio or some variant virus that the standard polio vaccine doesn't protect against. He notes that many of the CFS epidemics occurred alongside polio epidemics. Although my generation did have the polio vaccine in early childhood, we know from the flu vaccine that the vaccine that protects against 123A does not protect against 123B, nor against 122 or 124. What's to say that my virus two decades ago was not some variant of the polio virus? Due to the assumption that polio has been eradicated in the US, no one has ever tested me for the polio virus.
When a CFS patient reports paralytic muscle weakness, as many of us do, they are accused of faking. There are some insider reports that when Sophia Mirza was hospitalized, she asked for a drink of water and was told that if she was thirsty enough, she'd get out of bed and get it herself, as if this were "hysterical paralysis" and not the paralytic muscle weakness which has been documented by researchers who used a full range of advanced neurological tests to measure muscle function.
Tough love has its place, but it's not in the "treatment" of post-viral paralysis.
A dear friend who was a polio survivor started developing post-polio in the 1980s (precisely as Dr. Bruno notes, about 35 years after she had polio). The determination was that she had been overusing the healthy muscles in her arms since her legs ceased to function, and that continuing to overuse them in propelling her wheelchair would eventually leave her arms paralyzed, too. She was switched to a motorized wheelchair to save her remaining muscle strength.
So, it was absolutely no surprise to me when about 20 years later, I found myself in the same situation -- the more I used my hands during the day (typing, knitting, holding myself upright to walk), the weaker my arm muscles were by the end of the day; some days, if I kept busy all day, I was unable to lift the weight of a full fork to my mouth at dinner. I recognized it as the same thing Sheila had experienced. The recommendation she received, to preserve her remaining muscle strength through increased rest worked for my hands/arms, too. If I limit myself to typing about 30 minutes at a time, and then rest my hands for several hours, I can use my hands later in the day. If I decide to type for an hour or two straight, I can count on needing two hands to lift my glass of water that afternoon, and three will probably leave my hands totally useless the rest of the day. (The reason I cannot go back to work in any sort of clerical position.)
Yet, even though the medical profession recognizes these symptoms in post-polio as being very real manifestations of a neurological problem, those same symptoms in CFS are still being dismissed as "impossible" and "imaginary". Telling some people that the symptoms of CFS are almost identical to those of MS or post-polio results in hitting a mental roadblock; they've already made up their minds that CFS is a purely psychological problem and cannot shift gears to process its similarities to accepted neurological conditions.
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