Ailuridae
dr elmyraToday in I love being disposable and a teachable moment: 50 papers in, there is only research on "what can we learn about #LongCovid from #MECFS" and no research on "how does covid infection affect existing #MECFS patients".
queer as in fuck your borders
eladnarra@elmyra I was just thinking about this today. My specialist says her patients have been fine, but anecdotally I've heard stories of folks going from mild to moderate, or moderate to severe, sometimes seemingly permanently.
I assume ME/CFS makes me high risk, and even if I wasn't I'd still isolate and wear masks due to general risk, but it would be nice if they bothered to research it! Am I doomed if I get it? Would Paxlovid help? Is my risk higher or lower than the general 10% long COVID risk?
ahimsa@elmyra There is so little research on ME/CFS at all that it's not surprising.
In the 20 years before the pandemic, there were just 2,007 new scientific publications on ME/CFS vs. 45,000 for psoriasis and 114,000 for Parkinson's.
source = https://news.sky.com/story/how-long-covid-ruined-my-life-from-crushing-fatigue-to-brain-fog-12744444
But, I agree that it's sad / frustrating / infuriating! that researchers aren't looking at how COVID infection impacts ME/CFS patients.
Apple Annie 
@ahimsa_pdx @elmyra Knowing what I know about my own path through this illness over three decades, having gone from bad, to slightly better after a round of antiviral medication for shingles in my 20s, to worse again after stressful life conditions + a poor booster reaction, my calculations are that a Covid infection would trigger another viral reactivation of whatever reservoirs we already have + new post-Covid symptoms. Which is why I'm doing everything I can do avoid it.
@elmyra good god thank you for saying this, no one cares in my life, not even my family, I'm brushed off left and right I feel so alone lately except for folks online
@anniegreens I don't know where you are but in the UK I don't even qualify for covid boosters. And yeah, I am very lucky in that my chosen family do care and understand and keep each other safe, but to the rest of the world I'm acceptable collateral damage.