taniaaust1
Senior Member
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- Sth Australia
Im laughing here as basically dont meet the new ME/CFS definition IOM has made up. I have severe ME (use wheelchair often and are basically housebound) but arent not meeting it well.
I fit the Canadan Consensus Criteria and I fit the International ME criteria but I dont fit well with the new IOM definition....by the IOM it says my diagnoses should be questioned as I dont meet the definition well.
Why I dont meet it well is I dont at all currently wake up unrefreshed. (It only happens if Im having a crash and if I stay out of crashes (which I try very hard to do as that can cause me to end up in hospital) ..it doesnt happen at all.
Unrefreshed sleep was a huge issue for me for years but it isnt at all any more (the POTS stops me from being able to do enough to flare up this sleep issue most of the time). By this IOM definition, they expect people to be waking up unrefreshed "at least half the time". I wake up feeling unrefreshed only about once every couple of weeks or if Im pacing better, not at all.
With the CCC definition, unrefreshed sleep is an optional symptom and with the ME international definition if one fits into the other catagories (one just needs to fit 3 out of the four), one doesnt even need sleep issues or the "unrefreshed"sleep.
Anyway, I think its interesting my severe ME case isnt meeting properly the new IOM definition proposed! They've put far too much empathisis on "fatigue" over other symptoms and waking unrefreshed sleep goes with fatigue.
Anyone else got comments on this definition or find they dont really fit it currently? (as I said, I would of fit it well in the past but dont right now with how the severe ME is presenting).
I guess this is what happens when they put too much empathsis over a few individual symptoms rather then looking at it properly as being a huge symptom complex of different things going on. They should be going by ME testable abnormalities as I have quite a few of those.
I fit the Canadan Consensus Criteria and I fit the International ME criteria but I dont fit well with the new IOM definition....by the IOM it says my diagnoses should be questioned as I dont meet the definition well.
Why I dont meet it well is I dont at all currently wake up unrefreshed. (It only happens if Im having a crash and if I stay out of crashes (which I try very hard to do as that can cause me to end up in hospital) ..it doesnt happen at all.
Unrefreshed sleep was a huge issue for me for years but it isnt at all any more (the POTS stops me from being able to do enough to flare up this sleep issue most of the time). By this IOM definition, they expect people to be waking up unrefreshed "at least half the time". I wake up feeling unrefreshed only about once every couple of weeks or if Im pacing better, not at all.
With the CCC definition, unrefreshed sleep is an optional symptom and with the ME international definition if one fits into the other catagories (one just needs to fit 3 out of the four), one doesnt even need sleep issues or the "unrefreshed"sleep.
Anyway, I think its interesting my severe ME case isnt meeting properly the new IOM definition proposed! They've put far too much empathisis on "fatigue" over other symptoms and waking unrefreshed sleep goes with fatigue.
Anyone else got comments on this definition or find they dont really fit it currently? (as I said, I would of fit it well in the past but dont right now with how the severe ME is presenting).
I guess this is what happens when they put too much empathsis over a few individual symptoms rather then looking at it properly as being a huge symptom complex of different things going on. They should be going by ME testable abnormalities as I have quite a few of those.
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