Another new name for Chronic Fatigue Syndrome

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.

WHY?

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.

Please add your opinion.

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*B1: type into search box for more anecdotal information from my own experiments. And I may be all wet.

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12 thoughts on “Another new name for Chronic Fatigue Syndrome

  1. Thomas Weaver

    The name change is a bad idea. At least most people can understand the words themselves if you say you have chronic fatigue: tired all the time. That’s not the whole story, but enough for others to get the basic idea. Systemic Exertion Intolerance Disease — what’s that supposed to mean? Including the word “intolerance” in the name leaves it open for doctors to decide that it’s -the patient’s choice- not to tolerate exertion… and some of them -will- decide that, because it’s easier than looking for an effective treatment.

    “What is it that interferes with the body’s normal energy production mechanisms, or possibly the debris of such mechanisms which accumulates?”

    Recent findings about fibromyalgia (a high percentage of people who have fibro also have chronic fatigue) indicate a problem with spasms in the capillaries — possibly linked to an overabundance of nerve endings in the extremities — which means muscle tissue cannot rid itself of fatigue toxins fast enough, so they accumulate.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Thomas. I hadn’t thought about what you say – what the words are supposed to MEAN – but you are 100% correct, SEID is unintelligible on that basis.

      Chronic fatigue vs. the correct Chronic Fatigue Syndrome (which implies fatigue is only part of it) is hard enough for most people.

      I have exactly that experience: every 2:20, I take a nap – and the debris which has accumulated in my brain has a chance to get washed out. I think of it as mental dialysis. It is probably something like that: ‘the muscle tissue cannot rid itself of fatigue toxins fast enough.’ You’d think that would be easy enough to study! I often wonder if regular dialysis would help.

      The kicker is that I have to take myself completely out of action each time, and that 35 min. is often not enough. I don’t know what people on regular dialysis can do with that time, but I doubt they can’t even read or watch TV or listen to an audiobook – I can’t. 3-5 times a day. It is the ONLY consistent thing that works, and it usually works best the first nap or two; after that it restores some function, but less each time. I spend a lot of time daily staring at the wall without the ability to get anything done. I reserve the first couple of sessions – when I may have relatively usable brain – for my writing.

      And I KNOW it all works just a little bit better if I stay completely away from carbohydrates.

      This is all stuff I’ve figured out from what I read, that and the B1.

      I try every day. I do the best I can. I do as much as I can. I know I can get a short boost with adrenaline when I absolutely have to, but will pay back with extortionate interest.

      I wait – for some of those healthy researchers to figure it out.

      Meanwhile, I have a life to live.

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    1. Alicia Butcher Ehrhardt Post author

      I HAD life. CFS stole it. I want it back.

      And is it too much to ask that research funds allocated by Congress for CFS research be spent on CFS research? Long tawdry story, I understand – and nothing can be done about it now.

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      1. ericjbaker

        Indeed. Not to get on a cynical rant, but our elected officials and their appointees who make those decisions have long since been purchased by corporations. That’s about the same time they stopped thinking of us as human beings.

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    1. Alicia Butcher Ehrhardt Post author

      The a mount of incompetence is staggering – and add to that, the ‘physicians’ who say your swollen glands and inability to move are all in your head, and go check out one of the ‘protocols’ with 30 or 40 proprietary things you’re supposed to take, and add to that a huge intolerance to even normal amounts of most drugs (let the side effects begin).

      Annoying is a bit mild. I just hope they get it in my lifetime.

      Thanks for commenting – my frustration is NOT with individuals, but with things like a CDC that, for many years, diverted almost all funds allocated for CFS research to other diseases.

      Unfortunately, where the doctors fail, the quacks come in.

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  2. Widdershins

    … but … but … someone important spent a great deal of their very valuable time, and a great deal of research grant money, to create this obviously much more accurate descriptor – and quite sexy sounding acronym, they’ll have you know.

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