I went to the Stanford Chronic Fatigue Syndrome Clinic today. If you're in California, and you have Long COVID, and you're unable or unwilling to pay for a private doctor, it's probably your best option for finding treatment:
My expectations going in were low based on some of the reviews people left on the helpforlongcovid website, but I was pleasantly surprised. They prescribe several treatments, order blood work, and were willing to work with me to try to get other treatments I'm curious about
I would contrast this with Long COVID clinics I've been to, including Stanford, which only offers a couple treatments, doesn't really care about blood work, and the appointments basically consist of a long interview with not much offered, as if they are just collecting data
They explicitly reject a biopsychosocial model. They believe it is a misfiring immune system, and it has nothing to do with depression or mental illness or anything along those lines
In terms of treatment, the major emphasis was on doing whatever it takes to avoid crashing. After that, they advocate a Mediterranean or low carb diet to reduce inflammation
But they also offer several pills: low-dose naltrexone, low-dose abilify, Ketotifen, hydroxychloroquine, celecoxib, famotidine, colchicine, methotrexate, and some jak inhibitors
They said they are starting to use rapamycin but are unsure what the right dose would be
I asked if they could help me get IVIG, and they said they would.
I asked about pemgarda, and they said they'd be open to prescribing it, but had a difficult time sourcing it in the past.
The bloodwork they ordered was detailed immune system tests - natural killer cells, t-cells, etc. I'm not sure if this is a regular thing, or maybe they ordered it for me because I told them exposure to other viruses has often caused me to crash in the past
They didn't get too in the weeds about PEM. Some people are very particular about it - 2-day cpets, and certain number of hours for it to be delayed, how long the crashes last and so forth - but they were not.
The questions were more just around things like, "do you experience crashes?", "do you know what causes them?", "how has your life changed since this happened to you?"
One thing that might be interesting is I asked about MCAS, and they told me they didn't believe in it. They didn't think it was really a thing.
I asked if they thought all these chronic illnesses are the same: Long COVID, ME/CFS, etc. There are many people who feel strongly about this.
They sort of advocated for a compromise position, saying that each of these illnesses might be caused by a chronic pathogen that is specific to it, but that the processes going on in the body might be the same
I told them about my plan to try TRT, and they said that they doubted it would do anything for me.
I don't know if my experience was unusual, but I would recommend it, if as I said, you cannot afford a private doctor. I don't think they're offering any revolutionary treatments here, and the wait list is about 6 months, but this is definitely better than many other places
Might be remembering incorrectly, but I think the point on rapamycin dose was that it could require a much higher dose than some people think and that it would therefore require tight medical supervision
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