That's good. What you're saying, including the MCAS, sounds post viral to me, and of course it makes my brain go to post covid, but I know you have some other viral history. Whatever the case, I wish it didn't sound post viral to me :(. I hope it all resolves to your previous baseline soon. The lack of further anaphylaxis is a good sign at least.

Can you be active and do your usual level of activity and still feel the same in the next day or two, or is your activity level highly affected? My answer would depend on that.

Do you have testing that shows more than two standard deviations between his processing speed and his scores on other submeasures? That may be helpful.

What @Spryte said 👍.

I was just looking at this more, and besides the fact that this one was based on a survey (and only 1/3 responded, calling selection bias clearly into question), this was an interesting quote from one of the researchers: I thought it was interesting that he acknowledges the results are going to look better if people who already have long covid are included. I'm very interested to see the results from the trials testing longer courses of paxlovid in long covid. It's not that I think paxlovid is a wonder drug and everyone should have it, it's just that there's nothing else out there being offered for reducing long covid risk and/or prevention of worsening in those who already have it. When it's the only option in a desperate situation, well, it's the only option.

Thanks for posting. I'm still trying to parse the different possible meanings of the addition of "through day 28" to the primary outcome. I thought maybe it was to eliminate any potential effect from rebound, but then saw they did include rebound. All I can think is it's something to do with separating acute symptom resolution from onset of long covid symptoms, as there is very frequently time period between people feeling like they recovered from covid and when they start having post acute covid symptoms. I don't know that I agree with his logic about placebo side effects. He says they should be set at 0% in order to not cover up any effects from the intervention, but if 24% of people in the placebo group reported side effects, that makes sense to be the baseline to compare against, because you would expect a similar amount of people in BOTH groups to report various adverse effects that aren't actually due to the drug at all. I don't know why it would be that everything counts in the drug group, but nothing counts in the control group. It's like with vaccine studies--it's entirely relevant to see how many people who received placebo reported adverse events, otherwise a vaccine looks much more dangerous than it is. I'm glad he at least addressed long covid here, though it sounds like he's unaware that there are multiple studies of paxlovid for long covid being run. Or that several have already been run that found benefit. I'm aware of a couple that found a significant benefit and one that found no difference. Notably, the one that found no difference also found that Paxlovid had a higher incidence of rebound, which I think most agree now is not the case, which calls that study's results into question anyway. I think the jury is still out on that one, but still maintain that there is enough data to at least offer it to those already suffering long covid if they are infected. Metformin had stronger results than Paxlovid for long covid reduction, but that's a harder one to get prescribed for someone who doesn't usually take it. I also disagree with his conclusion that there's no reason to test to determine if it's covid. I know part of this is a difference with publicly funded medicine. For people who end up with long covid symptoms though (which is a significant number), a documented history of a positive test is often important for receiving treatment. I think he just doesn't think this disease is much different from the flu at this point, and I think that's an emergency medicine bias.

I can believe those things happened and shouldn’t have. I’m biting my tongue hard on this one though, to be honest. Without bringing up specific details, I expressed strong concern in your original thread about this when it first happened and then down the line those concerns came true which was very, very sad. Which is why I’m surprised to hear you saying these things. I’m glad things at least ended up okay in the end.

Edited to just say there are really good reasons for that.

This is adorable 🥰

This does make it much harder if she is opposed. I would take that into consideration at this point, while also being aware you might need it for services at some point. I never in a million years thought my kids would need any special services when they were that age, but things got much more difficult in young adulthood and the diagnoses were necessary for certain things. I’d be inclined to get on a waitlist somewhere, prior to high school at least, and then you have an appointment if needed.

That was similar for my girls, except they were early teens. We were able to find someone experienced in recognizing autism in gifted girls. Perhaps you can find someone like that near you?

I can’t tell if you mean this is a new thing, or going on for awhile? Like hours, days, weeks? My concerns would be different depending how long.

Right. I understand the issues as far as funding for people taking it for long Covid prevention, though I would argue that with the data we have, it would seem reasonable to at least have people who already have long Covid on the list of those eligible. It’s a terrifying prospect for many of those to consider getting reinfected and getting even worse, and the fact that Paxlovid has a number of studies indicating a strong benefit seems to make a good argument to at least allow compassionate use for that group while waiting for more data. My frustration in my post was more specifically to the statements that bad outcomes from Covid are rare now and the laser focus only on acute outcomes. While we don’t have treatments for long Covid, we certainly have enough research to say it remains a massive problem. I think it’s super irresponsible for doctors and other health related professionals to make statements to the media that people don’t need to worry about poor outcomes from Covid.

Gosh, I find this continued focus simply on acute outcomes to be so frustrating. It matters and people are still dying, but even more, large numbers of people are being left with long term effects up to and including potentially permanent disability. Such that this statement from the article: Sounds patently absurd to anyone who knows the long term risks. Why the continued looking the other way from the long term sequelae?

I agree it sounds probably unlikely, but it’s not even a squatters rights issue at this point, it’s a landlord-tenant issue, and Scarlet had said way back some thing about the fact that he probably knew his landlord tenant rights. It will most likely work out fine, but with as strongly as they feel about it, I’d still be making sure I was following and documenting the process so that there were dates recorded of when the process started and what steps had been followed. That’s me though. If I felt strongly I wouldn’t take any chances.