I am so glad that @LisaBeilfuss wrote about this but I want to push back gently on this point. #longCOVID is not really a mystery. And the reason why we don’t know how many people are not working due to #longCOVID is because WE AREN’T COUNTING THEM.
.@uscensusbureau’s Household Pulse Survey could do this. There is a long history in reporting of calling medical conditions “mysteries.” Much of the time the “mystery” is some combination of politics, low awareness, ignorance, discrimination, poor priority setting, etc.
And I would submit we have enough literature and reports on #MECFS not to term it a “mystery.” Or at least, we know enough about the ubiquity of post-viral symptoms not to call #longCOVID a surprise.
There is zero reason for the @uscensusbureau’s Household Pulse Survey not to have had a post-viral symptoms question from day one.
But truly thank you @LisaBeilfuss for writing this piece! A few of my friends have been talking amongst themselves about this for some time and were hoping reporters would begin to shed light. Thank you.

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More from @jenbrea

8 Dec
So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassau’s @RuhoyMD that I’m going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. She’s even a certified medical acupuncturist! She now helps lead a neurosurgery practice. 😍😍😍
Ruhoy: “I was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldn’t combine it.”
Read 58 tweets
8 Dec
Thought:
– people with EDS have tethered cord syndrome and intracranial hypertension at higher rates
– many also report ADHD

#NEISvoid
– attentional awareness involves modulating blood flow to different areas of the brain
– but tethered cord syndrome causes hypoperfusion, and thus, hypoxia (so does intracranial hypertension)
– could ADHD be an **adaptation** to chronic hypoxia?
– could “distractability” be the state of shifting your attention and in so doing, shifting blood flow to other parts of the brain so as to avoid prolonged, reduced oxygenation of other parts?
– could this also related to “brain fog?” and cognitive PEM
Read 10 tweets
8 Dec
On math: when I was in the seventh grade, I noticed that my math teacher almost never called on me, even though I raised my hand to answer almost ever question. I further noticed that she wasn’t calling on the other girls (who rarely raised their hands).
Given that I was never called on, I started counting how many times my teacher called on girls in the class v. boys and counted how many girls and boys were in the class. I used this to estimate that she called on girls 6% of the time.
Even though I did not have language for what I was doing at the time, I just realized now that this was my first exercise in gathering data and tabulating the results. I was twelve years old. I would not attempt this again until I was a senior in college, writing my senior thesis
Read 7 tweets
7 Dec
Do you live with #longCOVID, #MECFS, or any chronic illness or disability? Join @peterstaley TOMORROW for a reading of his new book (w/ @WildNycgirl). My conversations with Peter and the documentary @surviveaplague inspired BOTH @unrestfilm and @meactnet:
meaction.net/event/qa-with-…
And by inspired I mean, I watch @surviveaplague (and honestly, fell a little in love with Peter. I mean, who doesn’t?) It was the first time I conceived of my own illness (#MECFS) as both a civil rights issue and a problem primarily not of science, but of politics.
I watched @ByDavidFrance’s @surviveaplague and as the credits rolled I thought, “We need a film.” I immediately began scoping out the Kickstarter campaign that became the seeds of @unrestfilm.
Read 8 tweets
6 Dec
Some already disabled people are experiencing severe side effects from the vaccine. The needs of ME patients and other disabled people—who are MORE VULNERABLE TO COVID—cannot be erased in the storm of vaccine politics.
Rather, we need to be included in trials. We need to develop alternatives (e.g., could smaller doses, more spacing between doses reduce risk?). We need SARS-Co-V2 *treatments.*
And we need to accept that a vaccine may not be the ultimate solution but rather one tool among many, and one that may not accessible to all.
Read 5 tweets
2 Sep
Honestly? Many researchers mainly tap into their own self-sourced ideas. Very few really do the “field work” required to formulate the most interesting and relevant questions. The idea of researching patients without actually listening to patients is bonkers to me.
This is a large part of why the research is so slow. Yes, funding is an issue, but in the #MECFS community, major possible contributors to illness go discussed for 10, 20 years but no researcher touches them. I’m thinking of mold exposure and MCAS as big ones.
Read 12 tweets

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