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I just made the connection that maybe my life-long poor sense of smell and taste is related to ME/CFS. It's common in acute and long COVID, so maybe I have a subtype that is somehow similar to those with LC. Anyone else with non-COVID-related ME who has long-term profound lack of smell and/or...

I asked the Morten Group about this on Twitter: Though I'm not too hopeful they'll respond as they didn't respond to a similar tweet about their test set methodology from over a year ago:

I saw that there's a planned Twitter campaign for May 31st to make posts to try to get John Oliver and/or Jon Stewart to cover ME/CFS on their shows. I would love to see John Oliver cover this - it seems like the perfect type of content for his show.

It seems like they did have a test set - 20% of the samples - and this is what the accuracy figures describe: The figures above are called confusion matrices (good chance @chillier you already know what this is if you are proficient in R, describing for others). The squares on the diagonal...

"Research Updates from the Melbourne ME/CFS Collaboration" from OMF's YouTube channel I fed the transcript of the above video to Claude (AI like ChatGPT) to create a bullet point summary. I think this is an effective way to allow people without the energy to watch the video to know what it's...

At least two trials are testing nicotinamide riboside (one of the chemicals in the treatment) in long COVID: Clinical Trial of Niagen to Examine Recovery in People With Persistent Cognitive and Physical Symptoms After COVID-19 Illness (Long-COVID) - Study completed 2024-02-23 Mental...

I don't know if Long COVID is the correct forum to put this in, since the study was about recovery from acute COVID. But I think it's possible that something that helps people recover from the acute disease could help with LC. Study

Linking the thread @Hutan made analyzing some of the literature on CoQ10 for ME/CFS and related disorders, showing that basically no effect has been shown in high-quality studies so far.

I tried with Claude.ai. I had it rewrite multiple times and all the answers varied a good deal, but it wasn't like "CFS" always made it more of an advocate for Wessley's views. Your theory does make sense, but there's also a chance the first answers you got happened to fit well with that...

It's possible higher doses are needed. From Phoenix Rising:

FYI, in October 2023, the journal added this disclaimer to the top of the page:

I'm not sure the exercise intolerance in CoQ10 deficiency is very similar to PEM though. From another case report: Other than that, I don't see many papers giving much detail of what exactly they mean by "exercise intolerance" in this condition. But it makes me think it might be worth...

This discusses CoQ10 deficiency disorder. I'm posting because it mentions exercise intolerance and cognitive dysfunction as symptoms multiple times, as well as because CoQ10 is an oft mentioned supplement in the ME/CFS world. Abstract Background: Primary deficiency of coenzyme Q10 deficiency-4...

Psychological outcomes of COVID-19 survivors at sixth months after diagnose: the role of kynurenine pathway metabolites in depression, anxiety, and stress, 07 July 2022

https://www.michaeljfox.org/news/national-plan-end-parkinsons-act-makes-progress-congress S.4851 - National Plan to End Parkinson’s Act

"The paper studied the non-disabled and then extrapolated the result to the disabled" would be more accurate as "The paper studied people people diagnosed with GWI who walk a lot and extrapolated to people with GWI who do not/can not walk a lot." Disability can come in a million different...

The primary and secondary outcomes show they will be measuring levels of 10 different chemicals, but why wouldn't they also include symptoms? I assume the initial visit questionnaire will ask about symptoms. Then they'll "repeat the baseline assessments". I don't know if that includes the...

Hmm, if they already spend 10% of their waking hours (~1.6 hours) doing "moderate-vigorous activity", it's not surprising that the exercise test wasn't very bad for them.

Did they only test symptoms within one hour after exertion? So they missed any PEM that takes longer than one hour to appear? @SNT Gatchaman Do you have the charts or any text about the "physical activity behavior"?

I do rideshare (Uber and Lyft) and food delivery (Uber Eats and Doordash). It doesn't pay much hourly, but I can work as much as I want, and take as much time off as I want, and they are basically the least exertion jobs I could think of that pay enough to live on (I'm bad with physical and...