The brainstem sensation is most specific - it feels like someone is gently squeezing it, or like someone had previously hit me in the back of my head.
In the worst times, but not always, this comes with vertigo and vision issues.
It doesn’t seem like PEM bc it’s instant. 2/
An example: I lugged a suitcase up 4 flights of stairs, & my heart rate hit 150 (I know, I wasn’t thinking).
By the top of the stairs I had the brain feeling and it lasted for about a day (was in bed the whole time). 3/
Weirdly, I also occasionally get this feeling with certain medications (like ambien) and sometimes will wake up with it (possibly from sleeping on my back?) The frequency has increased over time. 4/
I have referrals for a cerebrospinal fluid MRI and a brain CT scan; I already know I have low lying cerebellar tonsils but don’t seem to have Chiari. Any other directions I should be looking into? 5/
This could cause additional impacts like deficits in platelet energy metabolism, or hormonal dysregulation (because platelets carry serotonin) #LongCovid
Because this video has caused so much willful misinterpretation, I want to clarify: in the clip I’m countering the myth that #longcovid is lingering symptoms of acute COVID, since many people think it’s just a cough. I should‘ve said “acute COVID”; brain fogged & trying my best.
The interview was an hour long & they edited it to 5 min. I talked their ear off about all hypotheses & the science behind each & it didn’t make it in - the piece was for a general audience. I talked about all the other things COVID can cause, include diabetes & clots, at length.
Anyone who is suggesting I don’t think #longcovid is from COVID (????) or that I don’t think viral persistence is a high priority hypothesis (????) are *actively* ignoring 3.5 yrs of advocacy & that I’ve been highlighting viral persistence since 2020
The most exciting hypotheses in #LongCovid and #pwME are ones that could have cures! This includes viral persistence and others, and also includes the itaconate shunt hypothesis. I'm going to tweet this video as I watch it to try to explain it more 1/
Dr. Ron Davis used to work on the Human Genome Project but switched to ME/CFS when his son got sick. He's the director at the Stanford Genome Center. He is focused on *a cure* for ME/CFS. "I believe it is a curable disease." 2/
He describes the common onsets of ME - usually viral, but can have other causes too, refers to a big parasite onset in Norway from a few years ago 3/
@TheCrankyQueer: highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance
Oved Amitay: need to create a center of excellence to learn from trials in other diseases 1/
Oved: FDA needs to align on decisions across similar fields, needs cross-talk across similar groups
@Dysautonomia: Most even great researchers don't understand autonomic disorders, which happen in up to 2/3 of LC...is there an opportunity to offer autonomic training? 2/
@Dysautonomia: Also, need to make arms in these trials for pre-Covid POTS/MECFS - this helps learn about LC as well (ie does Paxlovid help pre-covid pts)
"Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” @turnoftheshrew said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet?"
2/
"Only a quarter of long-haulers have symptoms that severely limit their daily activities, but even those with “moderate” cases are profoundly limited. @julialmv still works, but washing her hair, she told me, leaves her as exhausted as the long-distance runs she used to do." 3/
Other factors that correlated with INCREASED likelihood to recover from #LongCovid include:
-being male
-having cardiovascular comorbidities
-lost appetite in acute phase
-had smell/taste alterations (this is often its own subtype that can come with no other symptoms)
3/