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I haven't read the report but generally thought the panel members presenting got it. For instance, one acknowledged that doctors might react negatively because these patients are not going to get better quickly and will require a lot of work - which could result in discrimination against...

Part of this is because their Long COVID definition is broad - "signs, symptoms, and conditions are present 4 weeks or more after the initial phase of infection" and "it's not one condition." On the other hand, its not clear how deeply they dug into some of the literature (this was not...

Inoffensive. But it doesn't mention funding and whether NIH plans on providing funding to advance research. What's needed is NIH funding designated specifically for ME (RFAs). Otherwise, researchers are in a very tough position of first being reviewed by grant reviewers who don't understand the...

This deck describing the Recover-Energize (exercise/pacing) protocol was posted in X on April 29. No indication of the source

I wondered the same. How would this fit in with Systrom's finding of impaired systemic oxygen extraction. only thing i can imagine is that the O2 that's there is not being used so no more delivered but I'm not sure that makes sense

So in a very general sense, I can see the point that ME is a "subset" of the condition of "chronic fatigue." And presumably, there are many different conditions that have chronic fatigue as a feature. But PACE was not claiming to be studying exercise in all such conditions. They were...

I picked up on that also. I think he might have been suggesting the lowered effort preference and resultant reduced activity had become self-perpetuating and so you'd have to address that in addition to any upstream issues. The fundamental concern I have with this study is how little NIH...

In the US in 2015, the CDC was still saying that PACE-style GET could help some patients. CDC dropped that in 2017 as a result of advocacy on all the issues with trial design - including how they selected patients. Regarding the diagnostic criteria - wouldn't there be a question of whether its...

Question from the audience - How do findings fit in with what we know about PEM Paraphrasing the responses" Brian Walitt – PEM fits in it two ways a) required as a symptom, b) evaluated with CPET and followon tests and c) did qualitative study of PEM Avi Nath – Whatever we saw in this study...

Thank you to all using their energy and expertise to unravel this. This has been very helpful If you do plan on asking a question at the NIH symposium, I wonder if it would be useful to submit the question before hand. It can be very difficult to get a specific question answered when asked...

Thanks for highlighting that! ETA - If he is requiring PEM in all patients, he will hopefully update the info in clinicaltrials.gov. On the other hand, if he is using Fukuda, hopefully he will subset out on those with PEM versus not and report those separately

Bolding added I believe these are two of Dr. Younger's three studies as listed in ClinicalTrials.Gov 1. Assessment of Neuroinflammation in Central Inflammatory Disorders Using [F-18]DPA-714. (DPA-714) Contact: Jared Younger, PhD and Jonathan McConathy, MD The primary objective of this study is...

So here's where I'm confused... @Ravn above noted: And the point of Workwell's Timeline slide is that pwME can learn early signs of overexertion, they can reduce or stop a PEM event. That was the case for the pwME that I described - that symptom preceded PEM on the days when she had not yet...

Thanks, @Trish. That's surprisingly good.

Thanks for that and good to remember that OI can be playing an overlapping role. I don't know if this person would describe head pressure like that or not but they were laying down the whole time so in that case, it was not related to OI

Another question to clarify - is there a standard definition for exercise intolerance? I ask because it seems that some LC clinical guidance and research studies equate PEM to exercise intolerance and then use that to leap to exercise as treatment. Of course, assuming they mentioned PEM at all...

Great discussion in this thread, especially separating out mechanisms from symptoms and change in function Just to clarify - How do you define fatiguability and differentiate that from PEM? The 2-day CPET studies have shown CPET is not measuring deconditioning and I agree it does not...

I think this is an important point. Reviewer #4, (appears to be Tony Komaroff, see p 6), questioned how they could have found no cognitive issues when it's been so widely reported. And Gudrun Lange is a neuropsychiatrist with extensive experience evaluating pwME. She's recommended specific test...

Not sure if this goes here or in the other thread. The paper noted: But this thread describes the high rate of failure of pwME on the EEfRT tests. That suggests pwME are not accomplishing what they are intending. Has that discrepancy been discussed here and/or do the authors explain...

I believe their point is that the selected participants did not reflect the spectrum of severity of ME. If I remember correctly, the average steps per day for pwME was about 3500 steps. So that is a weakness of the study even if it's understandable why more severe patients were not involved.