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It’s good she is bringing attention to Patient Led and the role of the larger patient community in moving the long COVID field forward. However, it’s not that patients just thought up this “great” idea to start solving the disease. It’s more of a necessary back up plan that the patient...

I would be curious to know your reaction to the meeting, @Dakota15 and others. I came away feeling more frustration than hope. We are almost 5 years into long COVID and we are *just now* having conversations about the kinds of drugs that people want to see studied? Not to mention, I get the...

Drinking alcohol seems to make my OI worse. I also tend to have worse sleep on nights where I’ve had alcohol, especially in the evening. Sometimes it feels like the effect of the alcohol hits me much quicker than it used to, for instance, after a number of sips versus after a drink.

Yes, it can be a tricky situation, can’t it? And how you explain or don’t explain yourself can depend on a lot of factors like who the person is, how well you’ve known them, and what type of social situation you are in. It reminds me of a friendship of mine that started when I was already ill...

Does anyone know what “non-invasive objective measures” Todd Davenport was referring to in the panel today? It wasn’t clear to me whether he meant that they are under development now or if he was referring to something existing already.

I know very few people mask in public nowadays, but it's still surprising to me to see so few people (who study long covid!) at this meeting wearing masks. They must not think they are susceptible to acquiring long covid.

This is a nice post that compliments the post on deconditioning well. The quote that you included from the S4ME member really captured an important feature of these contradictory arguments (that the patient is either doing too much or too little which is provoking their symptoms). The...

I have the same symptom and question. I don’t know what the correct answer is either. I also liken it to the lactic acid burn of max reps during weight lifting, it’s just now it can happen after trivial activity (such as holding a book to read) and can last for a long time (days on end or more...

Agree. Proliferation of such nonsense is a sad and preventable outcome of society’s failure to invest in ME and find actual explanations and treatments. I feel bad for the people who will try this out of desperation to feel better and follow his uninformed, costly, and harmful advice.

“When they’ve finished with it”! That made me giggle.

I have been having trouble keeping up with all the posts on the recent OI/POTs threads, so it's nice to have some things summarized in one article. Thanks :)

Please NIH prove me wrong with your actions because the empty talk and 'wait and you'll see how hard we're working!' approach is just not doing it for me today.

I don't have experience with the kind of chair you're looking for. I do remember seeing that @Grigor has a chair that reclines nearly flat from one of his videos (see about 12:00 min in to this vid):

I've only just gotten through the intro of this episode but when he jokingly introduced Oonagh as an "anti-recovery activist" I lol. I've watched a few of these episodes + some of the grief series episodes and think they're doing a nice job. The speakers I've listened to have been interesting...

In my non-statistically rigorous sample of doctors, I've had awful young women, validating older men, and many other combinations in between so for me, the criteria of being young and female is not necessarily a ticket to understanding. I would second the advice to look on local FB groups - I...

Do you remember where you saw this? I was reading thru the inclusion/exclusion criteria but didn't see anything about excluding Long COVID with prior ME/CFS.

Does anyone know of any updates regarding the 'interim analysis' of the trial data? The MedPage article above is almost a year old now. I'm with you @Trish about the impact to the RECOVER trial. If the study was indeed halted because the drug was found to be ineffective then why is RECOVER...

Demystifying Long COVID North American Conference 2024 https://academicmedicaleducation.com/meeting/demystifying-long-covid-north-american-conference-2024 Thursday, 6 June 2024 and Friday, 7 June 2024 Registration fee is '100% Discount' for People Living with Long COVID.

@poetinsf - where did you see that part of the presentation?

Link: https://longcovidstudies.net/ Article about the project in The Sick Times here: https://thesicktimes.org/2024/03/26/want-to-enroll-in-a-long-covid-clinical-trial-this-new-project-helps-track-them/