SEID THEY SAID – HOW DO WE PRONOUNCE IT THIS TIME?
CFIDS, CFS, ME – all names for the same thing they can’t figure out. Changing the name is like when the school districts keep changing the annual test they measure performance by: there is no way of keeping score, and all kinds of deficiencies get swept under the rug, because one year cannot be compared to another. They like it that way. It keeps them from having to be accountable. Yuppie flu. Chronic Mono. XXXXX
They are now proposing SEID: Systemic Exertion Intolerance Disease. Try remembering that.
Now maybe someone could please look at WHY we can’t tolerate much exertion? What do we lack that normal people have, or have that they don’t? What is it that interferes with the body’s normal energy production mechanisms, or possibly the debris of such mechanisms which accumulates?
I take a half-hour nap within every 3-hour period. I call it ‘mental dialysis’ because if I’m quiet, and in the dark, and horizontal, something clears out of my brain better while resting. I use megadoses of B1 because it seems to replace something needed for an energy pathway in cells that can’t process uptake of B1*. It’s taken me 25 years to find even this little bit which allows me to function a little bit. And write a bit.
DO SOMETHING INSTEAD OF JUST CHANGING THE WORDS
The medical profession just keep changing names. No accountability. NO cure.
No wonder I have to write a novel about it. The ‘real’ people do nothing.
I pronounce it ‘frustration.’
Excuse me – it’s my nap time.
*B1: type into search box for more anecdotal information from my own experiments. And I may be all wet.