and all the ME/CFS docs recommend it for almost all of their patients, with a very few exceptions. My doc has many delicate, sensitive patients, and I only know of a couple that he has told to skip it. For the rest of us, he's recommended loading up on antihistamines and mast cell stabilizers and then doing it, and most of us have been fine.
My mcas isn't really stabilized , it would be impossible for me to load up on mcas meds more than I am.
I have seen many accounts of me/cfs patients that are currently crashed way worse off than they are now. My impression of why me/cfs docs recommend the vaccine still , is that they may think that death and hospitalization are a main concern and not crashing, especially not having our lived experience that crashing is often worse than death. They may also assume that me/cfs patients are so worried about the vaccine bc of anaphylaxis or *acute* mcas reactions, like death from anaphylaxis, rather than more subtle but still awful long term reactions. I'd rather risk anaphylaxis with no long term issues than the other way round. There are treatments for anaphylaxis, and death isn't the worst thing in the world. There arepeople, however. Who have had these vaccines and still aren't better.
Jen brea has tweeted about this a lot, and I think of her as someone who is conservative in posting about topics like this and trends toward pro science stuff , knows statistics etc... it may be that serious vaccine adverse events like pwME aren't reported or measured enough bx how can u medically classify a "crash" that doesn't show up on blood tests etx... it's not like myocarditis or a clot.
But even if the vaccine is risky it would be worth it if it was effective against Long covid. However studies I found and showed in another thread said that while it's somewhat unclear, long covid isn't usually prevented by the vaccine very much if at all. The vaccine reduces risk of hospitalization and death only. If there is is effect reducing long covid it is a very small effect.
I'm not downplaying covid either. The ideal situation for people with this illness would be to not have to choose, and maybe with some of the newer immune treatments we won't have to. Paxlovid is in overly short supply some places but this doesn't mean everywhere , and it has been increasing in supply. Novavax has applied for eua and is available in many countries, just not the USA yet. And evusheld is available for some, personally I qualify , just trying trying see if it's risk profile compares to vaccines or what.
Paxlovid may even help with long covid as well.
It's true we have to deal with reality as it is and not as it should be, but pointing out that it's unfair that we don't have solutions better than vaccines that not all can tolerate could lead to solutions throughactivism, also scientists are starting to realize the vaccines aren't enough, as are leaders, so I think they'll maybe focus on developing other therapeutics. Or better vaccines , which may include safer , not just more effective. One can hope.
Mainly I'm interested in the safety and efficacy of evusheld, masking with n95s (fit properly , of course ), and thymosin alpha , and paxlovid against new variants
