Saturday, February 14, 2015

What's in a name?

What's in a name?
 
Systemic Exertion Intolerance Disease
 
SEID.  "How do you pronounce SEID?  Is it seed, side, said?"  Well, according to the committee, it's pronounced S.E.I.D.; four letters, not one syllable.
 
One faction likes it: it gets the hallmark symptom -- post-exertion relapse -- right out there in people's faces.  Others dislike it, with valid concerns that "exercise intolerance" will simply be another word that equates to Lazy or Deconditioned in many people's minds; we've just traded fatigue for another fatigue-like word.  To them I say, it's EXERTION intolerance, not exercise intolerance, and that refers to any type of exertion, mental or physical. 
 
Doing math is not something that's going to be impaired by laziness or improved by physical exercise.  Your brain doesn't get deconditioned if you don't read for a while -- you can pick up a book after years of not reading and still have reading comprehension. 
 
When I first got sick, my then-boyfriend, with no medical training, simplistically described it as Brain Fever based on the extremely high fever and delirium that he witnessed.  As it turns out, he was more correct than the many doctors who tried to wipe it away with psychobabble and anti-depressants -- it was a fever and it did affect my brain.  It takes major trauma to cause the cognitive problems we have; Sheila Bastien notes we have more problems than patients with Traumatic Brain Injury.  Somehow THAT symptom always gets lost in the accusations of being lazy or physically out of shape.  No one except activists and a few specialists seem to know that brain scans turn up unusual spots similar to the lesions found in MS, proving that we are not just lazy.  Somehow, the media and medical community have neglected to mention that, because it doesn't fit into the preferred narrative that we're just tired/lazy/crazy/fakers.
 
The name is not ideal, but at least our doctors fought to get us "Disease" rather than "Syndrome".  I've had too many arguments with people who are convinced that a syndrome is less severe than a disease.  Ummm, hello?, AIDS is a syndrome, and it's fatal.  Somehow that argument always goes  over their heads, and a few days later we're right back to arguing that I can't possibly be as sick as I say, because I only have a syndrome and not a disease.  Well, now I have a disease.  So there.
 
Dr. Dowsett noted that when they changed the name from Myalgic Encephalomyelitis to CFS, all connection to decades of ME research disappeared, as well as the insinuation that this condition has some relation to poliomyelitis.  I'm not sure whether it's a good thing or a bad thing if this name change has the same result of eliminating all connection to prior CFS research.  I mean, some of it has been good, like the studies that brought us to the notion of Systemic Exertion Intolerance.  Starting from a blank slate with a new name will mean we don't have all the studies proving that our bodies react in unusual ways to exercise.  There will always be those who -- just as they did when someone with CFS tried to invoke ME research -- will argue that that research doesn't apply because "you have SEID, not CFS; it's not the same disease."
 
 
 
HELPFUL HINT: I put the links to the IOM report and the IOM PowerPoint slides into my phone, so they are handy when I see a new doctor who needs some education in what we're dealing with.
 
 

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