@Jonathan Edwards Just trying to make sure I understand what the abstract is saying. There were two different, but potentially related, findings. In ME/CFS, antibodies were more often made with the IGHV3-30 gene. And there was a higher ratio of IgG vs IgM antibodies compared to controls.
Do you...
I haven't looked too deeply at PACE. For this paper's claim that ME/CFS fitness didn't improve because of disease to be true, the fitness of the healthy controls should have substantially improved. Was that the case?
Not really clear what they're referring to. (Edit: Oh, the main claim that...
I'm not sure if it's acceptable to NIH or the researchers to share a screenshot of the graph, so I'll refrain, though they said they will eventually post the recording on their events page.
But for what it's worth, it does look like a shift down in "subjective energy cost (ρ)" (where apparently...
I'm thinking she's just talking about the two guest researchers (they are a team that presented together). No one else seemed to talk about behavioral stuff (apart from Vicky introducing them). But it was odd how much time they gave those two. Out of the full hour, it was about 15 minutes for...
Interesting that all 24 had "exercise intolerance" but only 12 fit CCC for ME/CFS. Potential false negatives in the other 12 placed in the non-ME/CFS group?
The table says the "disease duration" for healthy controls was 6 months. What does that mean?
Odd that the p value is different (0.306...
Some snippets of the rest of the webinar:
Walter Koroshetz
Summarized findings of Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study, 2024, Vernon
Regarding RECOVER: "One other thing that came out of RECOVER [...] Dr David...
Potentially interesting finding from the two researchers mentioned above, Agostina Casamento-Moran and Vikram S. Chib from Johns Hopkins University.
They had people with long COVID and controls do some sort of hand grip exertion task. LC felt it was more effort, but they were able to exert the...
Similarly, expecting patients to put in the funds and legwork shouldn't be the norm because what's supposed to happen with rare diseases? The 100 people who suffer from it pool their pocket change and hope for a miracle?
We should strive for governments that cater to everyone without needing...
The recent OMF paper that surveyed patients found that the anticoagulants "Enoxaparin or Unfractionated Heparin" were the treatment with the highest number of people reporting feeling "much better" at about 30%. (6% reported feeling "much worse".) Also highly rated in long COVID.
Though...
Here are the two ME/CFS neuroimaging studies out of his university that I can see. I think the first is the one you're asking about. Both still say "recruiting".
Tracking Peripheral Immune Cell Infiltration of the Brain in Central Inflammatory Disorders Using [Zr-89]Oxinate-4-labeled...
Possible linking and treatment between Parkinson's disease and inflammatory bowel disease: a study of Mendelian randomization based on gut-brain axis
Beiming Wang, Xiaoyin Bai, Yingmai Yang, Hong Yang
Background: Mounting evidence suggests that Parkinson's disease (PD) and inflammatory bowel...
They've updated the registration to show the summary statistics for the outcomes. I did a Welch's test using the provided means, standard deviations, and sample sizes. Probably won't be as accurate as the tests they'll run using the raw data but should be in the ball park of the right...
Assessing Neuroinflammation in GWI Using MRS
Sponsor: University of Alabama at Birmingham
Principal Investigator: Jarred Younger
Study Description
This proposal is for a Tier 1 (Discovery) study that uses a human, cross-sectional, observational neuroimaging approach to measure...
Are you looking for these papers:
Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al
Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al...
When PACE-Gate Meets Sample Size
Nuno Sepúlveda
[Conference paper]
Abstract
PACE-Gate is the name by which the case surrounding the high-profile PACE clinical trial became publicly known. This case ended up in controversy due to a change in the pre-trial primary endpoint and a re-definition...
They seem to have dealt with that in the study:
Speech-in-noise hearing impairment is associated with increased risk of Parkinson's: A UK biobank analysis, 2025, Readman et al
Edit: More details
For me, while I've certainly had times where I was clearly hit by a crash two days later, most of the time it's very gradual and ambiguous how much of a delay there is. (Though that may be because it's almost all cognitive crashes now, as I am much better able to control physical overexertion.)...
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