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I am glad Nath got this paper out (haven't read it yet). Now, where's the promised paper(s) on the ME clinical study? (Time's a'wastin'!)

Hmmmmm - I will try to be positive in my wording. The review came about as a precursor to development of treatment guidelines. When completed, it was noticed that there wasn't enough new, solid, evidence for the development of treatment guidelines so that idea was shelved. However CDC has...

The CDC rationale for the evidence review was that it grew out of a CFSAC recommendation and was to be the basis for CDC to develop treatment guidelines for ME.

Pacific Northwest Evidence-based Practice Center of Oregon Health & Science University, the same place that did the 2014 AHRQ evidence review (https://www.ncbi.nlm.nih.gov/books/NBK293931/) .( The CDC evidence review does not take into account the 2016...

@hope123 - can you help @Milo?

Rowe says this is actually a summary of an interview with him done by the American Academy of Pediatrics (AAP). Comparing and contrasting this summary with the AAP guidance...

Interesting that this is hosted by the American Academy of Pediatrics which historically has not had much to do with ME in kids.

I should clarify - I quite understand the difference between reading for pleasure and reading to learn. But the experience of the PwME I care for is that when resting, they cannot read - for pleasure (even re-reading familiar things) or to learn. It is too draining. And listening to music is...

I don't get a good sense of how much improvement this person has had in their level of function and over what period of time. (Did they say how long they have been sick?) Basic sleep hygiene has not helped most of the PwME I know. Also apparently they don't get PEM from cognitive activities as...

A young person who thinks there are effective treatments for cfs. https://bmjpaedsopen.bmj.com/content/5/1/e001165

The cruelty is unreal!

There still is no widely agreed upon definition of LongCOVID. CDC has long shown itself to be very reluctant to track things that aren't widely accepted. [EDIT TO CLARIFY - They don't seem to like to take a stand against established beliefs.]

Fukuda, so this isn't about ME necessarily. Enough said for me. (pun intended)

Honest questions - What is the definition of insomnia - is delayed sleep onset/duration/sleep disturbances/other? How does unrefreshing sleep figure in the definition? What is the strength of the literature on insomnia in ME? And what is that literature?

(Sorry to be late in seeing this but I see MedFeb has answered.)

Like you, I believe the original report was about $1M. I don't know what NAM reports cost now. And I agree that they would likely have to be commissioned to do another report. (Just as there was little new for the CDC Evidence Review, there's likely not enough new to warrant another IOM(NAM)...

2 years to publication does seem like a lengthy delay but it may be NIH related. I say that because don't think there have been any articles published about the NIH Common Data Elements for ME/CFS and that project predates this POTS workshop. So I wonder if the NIH connection has something to do...

UGH! (Any other comments I have are unpublishable.... And seriously? PEACH? Crawley should not be associated in any way with one of the best of summer's offerings!)

fwiw - Slavitt is leaving in June - his position with the administration was a short-term appointment (max of limit of 120 days allowed I believe).

Even people who are very, very familiar with PEM can find it very difficult to tell for certain if someone close to them has it (as in someone just developing/coming down with ME). Because it manifests differently, because triggers may differ, because of delay in onset, because of the...