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@Leonard Jason -I am very glad you and your team are working to operationalize this questionnaire! Thank you! And thanks for sharing it here. Will there be guidance as to what "abnormal" entails and whether or not "recovery period" refers to the period during which one is returning to baseline...

This tweet is horribly cruel! On every level.

I find it "interesting" that Ben Katz and Renee Taylor are in this group --- both are/have been collaborators with Lenny Jason....

Anecdotally- I know several patients whose resting heart rate is so variable at all times but is not significantly worse/increased during PEM than when they are at baseline. And if someone is on medication that helps control their heart rate, how would increased heart rate as part of a PEM...

I am not on social media so I hope those who are can tell me if #UnrestPBS thread has talked about children, school, etc.

I hope that appropriate questions about PEM resulting from cognitive exertion will also be asked.

I sincerely hope that any definition of recovery also has an extended timeframe (YEARS) of significant, sustained and measurable improvement before the patient is deemed to have recovered!

Not exactly related - but this also makes me think of the parents caught up in the "service evaluation" piece by Crawley. The majority of those young people did not have ME, but I am sure all of the families were traumatized by the letter and evaluation. It seems to me that child welfare...

@Tom Kindlon - In addition to whether or not a study uses PEM as an outcome measure, it would be important to know how PEM was characterized for any study that says it uses PEM as an outcome measure. (Severity, duration, onset, etc....)

It would probably be worthwhile to check to see if either have availability to see new patients. The timing of your trip might be impacted by that.

To help people interested in commenting the announcement (about the public comment) is supposed to include a link to FAQs.

And here's the link (at last) NIH telebriefing transcript/recording

I have checked several times today and the transcript is not yet available.

@Sasha -yes, they said the recording and transcript would be posted. (I had understood they were to be posted last week but they haven't been yet.... I plan to email and ask about it in a few minutes. Will let you know if I hear back.) EDIT to add: (I heard back quite quickly - that's always...

@Joan - is this the sort of thing you are referring to? Pediatric Primer Not For Prime Time

In-person attendees must register in advance by sending their name(e) to cfsac@hhs.gov Sorry for lots of posts with dribs and drabs of important info but that is how info is being received (in dribs and drabs).

Agenda is now posted www.hhs.gov/live Call in number: (888) 469-1760 Participant passcode: 4510479

Yet another update from CFSAC (via personal email) The meeting will be livestreamed and recorded/posted for later viewing.

Another update from CFSAC "Participating in person at the upcoming CFSAC meeting We will be holding an in person meeting December 13-14, at the U.S. Department of Health & Human Services headquarters. We are located at: Hubert H. Humphrey Building 200 Independence Avenue, S.W...

CFSAC just sent this out: Good morning, below is the link to the Federal Register Notice (FRN) announcing the upcoming in person CFSAC meeting. Due to a delay of a few days in publishing the FRN, we will be taking public comments through next Monday, December 4th. A final agenda will be...