@itsbodypolitic and @patientled worked together to give feedback on these and it's really emotional to see our research, including the first report we did back in April 2020, cited here. 1/
It's going to take a while to go through & see what ended up in here, but a few things stand out to me that we pushed hard for:
A) The inclusion of a comprehensive symptom list, including PEM (and a definition for PEM!) and lesser-discussed but common symptoms. 2/
B) Instructions not to use lab confirmation: "Objective laboratory/imaging findings shouldn't be used as the only assessment of a patient’s well-being; lack of laboratory/imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms." 3/
C) A warning against the increased use of psychologizing #LongCOVID patients. Essentially a request to medical providers to learn about stigma and to be empathetic! 4/
D) An acknowledgment about common overlapping conditions and diagnoses including dysautonomia, ME, and MCAS, and acknowledgments that people with post-exertional malaise may benefit from pacing, & also explicit instructions to be careful with exercise testing in PEM patients. 5/
E) Less of a focus on physical rehabilitation, and equal inclusion of occupational therapy, speech and language therapy, and neurological rehabilitation. 6/
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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/