"This illness is defined by loss, and we are losing everything, even our memories and our sense of who we are.". My speech to the FDA at the Patient-Focused Drug Development Meeting on #LongCOVID is up.

None of these things have moved the needle much, but when you have so little, just a little more means a helluva lot.

#MCAS NPI:. Not even ketotifen has allowed me to tolerate food, so I maintain an absurd diet of white rice, quinoa, and sweet potato; poultry and fish; most vegetables; five specific fruits; and herbs. At least when I stick to the diet, I do actually feel a lot better.

#MCAS drug:. Ketotifen 2mg TID is the only drug or supplement that has had any effect on my MCAS symptoms, and I’ve tried a lot. It mainly helps with the background level of symptoms I’m having, not acute reactions.

#POTS NPI:. Constant hydration with water and electrolytes definitely helps. It lowers my HR, lessens my headaches, and generally makes me feel better. I try to drink about 2 liters of trioral a day. I think it increases my blood volume and helps get more blood flow to my brain?.

#POTS drug:. Ivabradine 7.5mg BID lowers my heart rate even better than a beta blocker did. At rest, my HR is now typically 65-75 BPM, and I have much less of that general sick feeling as a result. I haven’t seen my HR go above 100 BPM since reaching this dose.

#PEM NPI:. While rapamycin has reduced the severity of PEM, it has not reduced the frequency. I continue to pace nearly as strictly as before starting rapamycin 😔.

#PEM drug:. Rapamycin 2mg QD reduced the severity of my PEM. The worst PEM I’ve had since starting it is better than the best PEM I had in the 2 prior years of illness. It is often as mild as a minor headache now. It has also improved my fatigue and brain fog between PEM episodes.

My type of #LongCovid is moderate-to-severe #ME so mainly #PEM, #POTS, and #MCAS. I have found 1 drug and 1 NPI that has really helped with each of those 3 components.

I’ve been off Twitter (and on Bluesky) for a while, so I want to post a treatment update here in case anyone is curious. A combo of 6 things—3 drugs and 3 extremely onerous non-pharmacological interventions (NPI)—have enabled me to reliably feel better than baseline most days.

RT @carlywelton: A must read piece from Violet Affleck, connecting the climate crisis, the covid pandemic, long covid, ME, disability justi….

RT @patientled: Grateful to @PutrinoLab and the clinicians, researchers, & PLRC members who authored this response piece in the BMJ today.….

RT @DanMissailidis: @Y0ur_Neighb0ur Between changes in the way we have approached study design in the last half decade or so, and the few G….

RT @loscharlos: @LittleMammith OK the “it’s not the virus that we know from a meta analysis of 100s studies causes brain damage and cogniti….

RT @emrubenstein: Growing up, I'd delight in sorting and trading my Halloween candy after a night of trick or treating. This year, I'd tra….

ADHD doesn’t involve attention deficit, often doesn’t involve hyperactivity, and arguably isn’t a disorder. So what? We just need a name to call things, and often the first (wrong) name sticks. What matters is that when you say the name, I know what you’re referring to.

The name doesn’t matter. It could be called “COVID Malingerer Syndrome” or it could be called “Debilitating Biophysiological Non-Psychosomatic Post-COVID Multi-System Disorders” and it wouldn’t make a difference.

RT @BrainstemMd: @PSSD_Info @dsethlewis When I reduced my sleep hypopnea I reduced PEM/chronic fatigue frequency and severity.

Long COVID doesn’t need a holistic approach. PEM, MCAS, and dysautonomia can all be explained by a single root cause. And we’re just one good biomarker and animal model away from finding a silver bullet drug.

RT @TimesONeill: my piece in @thetimes magazine is about the failure of medicine to treat ME/CFS but also about the austere. inbuilt cruelt….

Or people with #MCAS or #dysautonomia or #PEM for that matter.