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I am concerned that my bias has me misremembering. What have been the arguments from NIH about the size of this study? I feel I heard them argue that the small sample size was NOT an issue because they were doing such a deep dive on each person that that would compensate for the small sample...

And how was recovery assessed? Also, were those who considered themselves recovered queried at later points in time to see if their "recovery" continued, ebbed and flowed, other?

@Simon M - As you say, Jason has long been opposed to the inclusion of OI. I wish I knew why, since it is so prevalent in PwME and even more so in pediatric age people with ME....

The article discusses the differences between Long COVID definitions and the resulting lack of clarity because of the varied definitions but at the end, under future directions and RECOVER says nothing about ensuring that there is an accurate definition of Long COVID for the pediatric (or any...

GRRRR!!!!

fwiw - A sampling of other publications Klimas has done with Antoni. Perceived Fatigue Interference and Depressed Mood: Comparison of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients with Fatigued Breast Cancer Survivors https://pubmed.ncbi.nlm.nih.gov/26180660/ Stress management...

Metrodora does have two women as providers (including Anne Maitland who is very well known in MCAS circles) but this scientific advisory board only has men on it. Just a comment....

It's worth keeping in mind that this was a committee and not the entire Senate so what the impact on the whole Senate (and the House) will be remains to be seen....

It felt as though it was the first time that on Capitol Hill myalgic encephalomyelitis had been said so many times in one hearing - and not just by PwME but by clinicians, researchers and even senators! (Please correct me if I am wrong.)

It feels almost momentous that 7 people from Johns Hopkins say this! For too many years it's only been Rowe (and now his colleagues Azola and Broussard) at Hopkins saying it.

Even though Amantadine appears to ease some of the ME fatigue experienced by a patient I know, the GI repercussions were too intense to continue taking it.

@RedFox - you might also check with your county health department who often administer COVID and flu (and other) shots.

You might ask Jennie Spotila (OccupyME) what they think of this as she followed CFSAC very closely.

I can't find the Lived Experience presentation by Chimere Smith Sweeney. There were lots of tech problems during her presentation. It's a shame they didn't clean it up and include it! She kindly recorded it immediately and posted it here https://www.chimereladawn.com/

@Dolphin day 1 is now available ADVANCING ME/CFS RESEARCH: Identifying Targets for Intervention and Learning from Long COVID (day 1) https://videocast.nih.gov/watch=52631 and (NIH conference: Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID (day 2)...

Thank you @Dolphin . I checked a few ways also but was hoping more adept folks (such as yourself) would be able to find.... It's odd that it doesn't seem to be available but day 2 is.

Has anyone found the video from Day 1 (12 December 2023)?

@Jaybee00 - this is weird. It used to link to the draft agenda and now I can't find it. Perhaps they are in the process of putting up the final agenda?

Is the wording of the quotes absolutely accurate? Given the source, it's hard for me to parse this without knowing how accurately wording was captured. Also, does Nath not remember that Walitt did this 2020 study which Nath's name is on? Characterization of Post–exertional Malaise in Patients...

Just to clarify - I am not trying to be on Nath's side. I have had concerns about the study since the first protocol was leaked. (I sent them a lengthy email then about some of my concerns re the protocol). I just find it very confusing that so many people would be able to exercise, not have...