Thread by @chiluvs1

I’m so upset — was just told that I don’t qualify for research because of what my medical records say. I can’t understand why researchers can’t correlate my neurological symptoms to #Covid and #LongCovid. This is how we make missteps in medicine.

I just want researchers to tell me how many black people they’ve been able to obtain for their #LongCovid studies because if we miss an opp to research ONE BLACK WOMAN who can share her experiences with OTHER BLACK PEOPLE, we once again miss the mark.

Because as far as I can see, there is little to no research about black people’s experiences with #LongCovid. First, it was I needed a +PCR test and now my medical records don’t support my neurological symptoms that arose because of #Covid.

We scream that we are trying to figure out ways to appeal to black people in research because we are often misrepresented. This is one of the reasons we don’t sign up for research. I fought to be considered without a +PCR. #longcovid

After everything I’ve experienced AFTER March 22, how could we not correlate these symptoms with #LongCovid? We are doing a disservice to black people who voluntarily want to be a part of research.

And ANOTHER thing: how many neurologists were actually believing that my blindness, occipital neuralgia, memory loss, cognitive impairment, etc. were #LongCovid-related in the early stages while I was trying to get docs to treat me?!

I want to be a part of research because it is imperative that we learn about how #Covid/#LongCovid affects the brain. But I also want to document my experience to share with other black ppl who may be considering doing the same.

Once again, we’ve found a way to marginalize the underrepresented & discount #LongCovid patients who’ve been screaming for help for a year & those with #MECFS who’ve needed help for years. This is another blow.