Nielk
Senior Member
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- 6,970
When I look at the criteria of the IOM, I don't feel that it is describing MY disease.
The criteria mainly describe measures of fatigue and sleep. It has left off a group of symptoms which to me seem vital. These symptoms which appear in other criteria are the ones that are connected to a vira/enteroviral etiology such myalgia, pain, headaches, sore throat and others.
If one merely looks at the symptoms of the IOM criteria, it describes a "fatiguing" illness which gets worst when one exerts himself and has trouble sleeping well. No pain, no malaise (except on exertion), no chills no swollen lymph nodes.
It makes it sound, as if, if one rests well, they feel perfectly well. It is only when they exert themselves that they feel ill. The name SEID gives the same connotation. We are only intolerant with exertion. As if when we stay within our envelope, we are perfectly fine.
I feel ill all the time. I have terrible headaches. I have some muscles. I have sore throats. I feel like this even when I am bedbound. Fatigue is just a very small part of my problem. If I pace and rest well, I do not experience PEM.
The IOM criteria does not describe my illness.
The criteria mainly describe measures of fatigue and sleep. It has left off a group of symptoms which to me seem vital. These symptoms which appear in other criteria are the ones that are connected to a vira/enteroviral etiology such myalgia, pain, headaches, sore throat and others.
If one merely looks at the symptoms of the IOM criteria, it describes a "fatiguing" illness which gets worst when one exerts himself and has trouble sleeping well. No pain, no malaise (except on exertion), no chills no swollen lymph nodes.
It makes it sound, as if, if one rests well, they feel perfectly well. It is only when they exert themselves that they feel ill. The name SEID gives the same connotation. We are only intolerant with exertion. As if when we stay within our envelope, we are perfectly fine.
I feel ill all the time. I have terrible headaches. I have some muscles. I have sore throats. I feel like this even when I am bedbound. Fatigue is just a very small part of my problem. If I pace and rest well, I do not experience PEM.
The IOM criteria does not describe my illness.