ummm Im shocked they've used something which had no research in in the main core of the definition. Its exactly what I'd thought when I saw that in the criteria and I really thought that wasnt from research done on ME/CFS.
There is research in relation to unrefreshing sleep, and it's clearly laid out in the full report. They are saying that no reliable objective measures have been demonstrated for sleep issues in ME/CFS. They are not saying that there's no research. The cited research is based on patient reports rather than objective data. For example, they cite a study by Jason in which 92% of patients report experiencing moderately unrefreshing sleep at least half of the time.
They are wrong, it isnt universal at all. My case is proof of this as a severe ME person meeting both International ME criteria and the CCC, the SEID criteria due to this dont fit me well.. as long as Im not crashing too badly or crashed, I do wake up feeling refreshed. (if refreshed is based on how fatigued one feels and having waking up with less fatigue).
Hi Tania, I pointed out to you yesterday that unrefreshing sleep is operationalised to include sleep disruption, which makes this criterion exactly the same as 'sleep disruption' in the CCC. In the full report, 'sleep disruption' is explicitly included in the operationalised section as a subset of 'unrefreshing sleep'. In the doctors' guide, it's not so explicit, but the suggested questions associated with the criterion demonstrate that 'unrefreshing sleep' is intended to be flexible in meaning.
Unrefreshing sleep doesn't relate purely to fatigue - it relates to the illness in general including all symptoms and impaired function.
The question to ask yourself is: Do you spring out of bed in the morning with no disability or symptoms? Or do you still have symptoms and/or impaired function after a night's sleep?
I do agree though, that it's perhaps not the most helpful of criteria because it's so broad and open to quite a degree of interpretation. But it does help to distinguish SEID from stress, normal tiredness, lifestyle issues and holding down three jobs simultaneously. The research they cite found that 16% of healthy controls report having moderately unrefreshing sleep at least half of the time, compared to 92% of patients.
This is my post from yesterday:
The 'operationalised' table in the full report on page 217, and the diagnostic tool on page 254, include unrefreshing sleep and sleep disruption. So, the way they've operationalised the criteria equates it to the CCC i.e. unrefreshing sleep and/or sleep disturbance. (Although, this does seem to contradict the rest of the IOM report.)
These are given examples of how it might apply to a patient:
"Cannot fall asleep or stay awake."
"After long or normal hours of sleep, I still don't feel good in the morning"