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What do you think of the proposed new name of CFS

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Chronic Fatigue Syndrome
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Posted 2/27/2015 1:50 AM (GMT 0)
Systemic Exertion Intolerance Disease (SEID) as proposed by the Institute of Medicine.

When they came out with it last week I wasn't really a fan except that it did away with the "chronic fatigue" aspect of the name. I have always hated the name of this illness because no one seems to understand how chronically ill I am, I am not just tired. My body does not make energy like other peoples do, I can sleep for 8 hours & wake up feeling like I haven't rested at all, like there is nothing there to help me move. Systemic does show that this is a wide spread illness & effects our whole bodies, I know I have to deal with many things like lymph node swelling, inflammation through my muscles & joints, flu like symptoms, etc. The word disease does take it out of the realm of syndrome & gives it more credence.

I could live with the new name because I hated the old, but I would like them to find something else like the European name of CFS, Myalgic Encephlomyelitis, although it deals mostly with the inflammation of the brain, it sounds better.

Anyway, that's my take on it, I am interested in what you all think.

Hugs, Denise
Posted 2/27/2015 10:24 AM (GMT 0)
Hi Denise,

Sorry, I don't like this new name.

It's better than it was. systemic I like. exertion intolerance is the sticky part. I believe that the illness has an underlying cause. My opinion (based purely on my education...a biology degree, and my own experience) is that we have misfiring cells. (non technical description!). Cells are all over your body...hence the attack on every part of your body, including muscles. They don't produce the energy they need. so exertion intolerance is okay...but other parts of our body are affected without exertion? eg IBS, Headaches, temp regulation etc...

So better...but still not absolutely right.
At least they've called it a disease.
Posted 3/11/2015 1:01 AM (GMT 0)
I don't like the new name. This illness is complex as I have dealt with it for 20 plus yrs. I believe it involves our immune system, our neurological system and much more. I'm not sure that in my lifetime that I will hear about a test(s) that can detect this horrible disabling illness but I sure hope so. Then of course meds for this disease.
Posted 4/4/2015 3:43 PM (GMT 0)
I'm not drawn to the name either. Like the previous poster has said,
this disease is more complex than just being tired after exercise or
exertion. I'm hoping they don't use the name. I also prefer
the ME name which I believe they use in England.
Posted 4/5/2015 8:03 AM (GMT 0)
Having dealt with this for at least 30 years, but only have diagnoised for 23, it still amazes me at how many people have never even heard of CFS. It also amazes me at how many doctors deny that it exists, that it's all in your head, you are just being lazy and using that as an excuse for not doing something you don't want to, etc. People just don't understand that there are day's that you are doing good to even make it from the bed or chair to the bathroom.

I am not real excited about the new name, but I am hoping that maybe it will get people to realize that this is real, that our bodies are really dealing with something physical, not just our imagination or a play for syympathy.
rolleyes

Post Edited (tepot) : 4/5/2015 2:08:27 AM (GMT-6)

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