Thread by @DetsNick

Yesterday I completed the #Ampligen clinical trial for #LongCovid. An update thread:

#MyalgicE #pwME

TLDR: 12 weeks on Ampligen (assuming it was Ampligen and not placebo) gave me a small but positive baseline improvement.

First, I developed #MECFS, #POTS and #CCI after a Covid infection in the first wave, March 2020. The hallmark symptom of #PEM appeared 3 months later, then I received the first of the above diagnoses 3 months after that. I am still disabled / housebound due to PEM (mental+phys)

I modestly improved on Ampligen. While I didn't feel ready to push exertion with any kind of exercise, I managed better on each walk test. After 10th infusion I started experiencing more energy on good days; a feeling of more blood flowing to my brain.

On good days, I noticed I didn’t need to lay down as much throughout the day, and my mental capacity felt more robust. I even had a few days where I didn’t need to nap at all (very rare for me).

I was able to attend movies at a theater about once a week, including Scorcesese’s 3.5 hour “Killers of the Flower Moon” (superb btw!) along with the twice weekly infusion appts.

I went to a concert (a big deal for me - first concert since 2/2020). I still required wheelchair assistance to manage footsteps and seating during this 4 hour event. None of these caused me major PEM. Granted, pacing was key.

POTS symptoms didn’t seem to budge, but are managed with beta blocker and mestinon so it’s hard to tell. Sleep didn’t budge (still sucks). Energy baseline boosts were most noticeable after infusions 10 and 24.

I still had days where my baseline regressed to previous one — and even worse during one particular “October slide” week — so I by no means experienced consistent relief of symptoms.

Still, the improved energy kept returning on good days and it was a distinct feeling I haven’t had since falling ill. It didn't seem to mount week to week; as mentioned it was up and down, with a net positive.

I’m still quite disabled, but on good days I'm at a slightly more comfortable baseline. I’m roughly 5-7% better after three months.

They are unfortunately NOT unblinding it, but I'm fairly certain I got the drug due to distinct side effects (which I can’t discuss). Since I improved AT ALL, and assuming I got the drug, this is modest but real experiential evidence that the drug can do something positive.

Therefore, I believe everyone with #MECFS and #LongCovid and similar postviral conditions should be able to access it. That said: was it a magic bullet for me? No. Could it have been had I been on it longer? Possibly - but I have no

way of knowing unless I can try it for longer. Personally, if I had access to it again, I would trial it for one year (as has been standard in previous trials) but discontinue if the improvements didn't bring me to an acceptable quality of life. Will the benefits last? Not sure.

I'm very grateful for the enormous privilege to get to try it. I recognize how stupidly and unfairly rare this is, and how many haven’t been able to do the same due to financial, geographical and exertional limitations.

I’m also grateful for the opportunity to work with the lovely research team here in Fort Lauderdale, and to meet my friend @ramiro in person.

I was the last patient enrolled in this study, 80 out of 80. So that means each arm of the study will be wrapping up shortly. I'm not sure how long it will take the sponsor to complete/publish it, but Q1 2024 still looks possible. This is just my own prediction though.

I will be out of pocket the next few days traveling, but happy to answer any questions when I can. Hope y’all are doing as well as can be.