not pandan-me, pandanus
@microfiche.bsky.social
Reposted by not pandan-me, pandanus
Throughout the protocol, there are nudge-nudge, wink-wink phrases that... make an impression. People with PEM know exercise doesn't cure Long COVID or ME, and talk to each other about it. The researchers want to ensure that patients don't understand they're in an exercise trial for that very reason.
December 17, 2025 at 8:01 PM
Throughout the protocol, there are nudge-nudge, wink-wink phrases that... make an impression. People with PEM know exercise doesn't cure Long COVID or ME, and talk to each other about it. The researchers want to ensure that patients don't understand they're in an exercise trial for that very reason.
ymmv, but I have this reaction to blood draws. My Dr says it's not uncommon. I had to stop doing clinical trials bc of it.
December 15, 2025 at 2:04 PM
ymmv, but I have this reaction to blood draws. My Dr says it's not uncommon. I had to stop doing clinical trials bc of it.
If your ferritin & B12 are in the bottom 10% of "normal" range you might still be anemic. For me: WAY worse POTS, fatigue, brain fog, etc. Iron + B12 made me feel more alive after 6 weeks. I also recommend the Visible app for pacing. Neither are cures ofc and I'm sorry you're dealing with this.
November 27, 2025 at 1:55 PM
If your ferritin & B12 are in the bottom 10% of "normal" range you might still be anemic. For me: WAY worse POTS, fatigue, brain fog, etc. Iron + B12 made me feel more alive after 6 weeks. I also recommend the Visible app for pacing. Neither are cures ofc and I'm sorry you're dealing with this.
Have you seen this clinical trial? addresslongcovid.com
ADDRESS: Long COVID Clinical Study | BioVie Pharma
ADDRESS: Long COVID- Clinical study evaluating anti-inflammatory drug for underlying the neurological symptoms of Long COVID.
addresslongcovid.com
November 26, 2025 at 7:19 PM
Have you seen this clinical trial? addresslongcovid.com
That's great to hear!
November 25, 2025 at 5:03 PM
That's great to hear!
This is something I'm thinking about trying next. Apologies for the invasive questions, but have you had any side effects? Has it helped with other symptoms apart from brain fog?
November 25, 2025 at 4:56 PM
This is something I'm thinking about trying next. Apologies for the invasive questions, but have you had any side effects? Has it helped with other symptoms apart from brain fog?
Idk, as a first waver, this is the kind of thing we were trying in summer 2020. I do think studies that rule things out are useful. However, Recover has invested too much in researchers with no IACC experience. Here's a good rundown from the Sick Times back in 2024: thesicktimes.org/2024/05/31/t...
‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals - The Sick Times
In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans. Three years later, ...
thesicktimes.org
November 25, 2025 at 4:34 PM
Idk, as a first waver, this is the kind of thing we were trying in summer 2020. I do think studies that rule things out are useful. However, Recover has invested too much in researchers with no IACC experience. Here's a good rundown from the Sick Times back in 2024: thesicktimes.org/2024/05/31/t...
Anyway don't take the framing of the article too seriously. The only people who thought these were the most promising long covid treatments were the same psychiatrists who've been killing me/cfs patients in the UK.
November 25, 2025 at 3:56 PM
Anyway don't take the framing of the article too seriously. The only people who thought these were the most promising long covid treatments were the same psychiatrists who've been killing me/cfs patients in the UK.
against so much of the Recover budget going towards useless research. Now that they have proven to themselves it's really not all in our heads, maybe there will be more focus on actual treatments. They're doing a maravaroc trial right now - sample size of one, but this greatly improved my brain fog
November 25, 2025 at 3:55 PM
against so much of the Recover budget going towards useless research. Now that they have proven to themselves it's really not all in our heads, maybe there will be more focus on actual treatments. They're doing a maravaroc trial right now - sample size of one, but this greatly improved my brain fog
This might sound weird, but this trial is actually good news. For years (pre-covid, even) CBT, brain retraining, and other bs "treatments" have been given more attention than they deserve for long covid, me/cfs, and similar conditions. The article made me laugh because advocates fought...
November 25, 2025 at 3:53 PM
This might sound weird, but this trial is actually good news. For years (pre-covid, even) CBT, brain retraining, and other bs "treatments" have been given more attention than they deserve for long covid, me/cfs, and similar conditions. The article made me laugh because advocates fought...