Next week, Thurs, Jan 18th at 10am, the Senate committee for Health, Education, Labor & Pensions, chaired by @SenSanders, is holding a hearing titled “Addressing #LongCOVID: Advancing Research and Improving Patient Care”.

WHAT DO PATIENTS AND ALLIES NEED TO DO?

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Join #longCOVIDmoonshot organizers and members of the #LongCOVID community on Tuesday, January 16th for a call party to Senators on the HELP committee to get them to attend and learn more about LC.

Call guide available in this thread

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https://twitter.com/lcmoonshot/status/1745892164088074612

I just want people like @jonfavs who mock the thousands of thoughtful comments on #PodSaveJon to understand one thing: people with conditions like #LongCOVID and #MECFS carry a profound level of grief with them every single day. To have these illnesses is to wake up every morning and grieve the loss of who you were and who you could have been if you didn’t get struck down by a deeply debilitating yet under-researched condition; grieve loss of family or friends who can’t or won’t understand;

It was really nice to meet some of y’all in the LC space. There are so many thoughtful, passionate, community-oriented and most importantly COMpassionate people in this community. But I don’t think I want to continue engaging publicly with this community. It means engaging with too many people who behave in a way or sit on idly by while others blatantly lie, wear their ignorance or biases like a badge, and confused calling others grifters with advocacy.

Apparently being sick means that you are allowed to abdicate any sense of moral decency? And all of the people so quick to jump down my throat for 1) rationally and calmly asking a leader in the LC space to clarify whether she thinks it’s okay to bully another patient because her tacit approval equals approval and…

This is an excellent summary of what the Holodomor aka Stalin’s Terror Famine was. Between 1932 and 1933, the Holodomor claimed the lives of millions of Ukrainians in the brutal soviet regime’s quest to crush Ukrainian resistance/nationalism/language/culture.

https://twitter.com/nadiawhittomemp/status/1662065828823539712

I recognize I have lots of new followers since getting sick last summer who might not understand fully why Ukrainian resistance to the current Russian invasion is so full-throated, visceral, and unyielding. And why even the diaspora is just as involved and loud.

Good thread from Lisa on the recent NIH paper. I do wish the media acted with more care on reporting about the study because they have outsize influence on how the illness is perceived in society at large, but also in medicine. It’s called the Fourth Estate for a reason.

https://twitter.com/lisaamccorkell/status/1662480025487306753

There seems to be a disconnect between the authors of the paper, who understand that this is the beginning, not the end. And what got sent out in the press release and then what subsequently was reported lazily in too many media outlets.

Reason EBV doesn’t kill millions these days is because it’s part of a family of viruses that’s been with humanity since the dawn of time. Some theorize that viral persistence of herpes viruses have an evolutionary benefit to humans. That doesn’t mean that EBV causes *no* damage. EBV is known to cause numerous chronic illnesses immediately following infection or reactivation (MECFS, POTS, etc) as well as devastating chronic illness and cancer later in life (hello, MS and rare blood cancer!).

Had my follow up with Dr. Susan Levine. My results are “highly suggestive of #MECFS”. Firstly, she suspects reactivated herpes viruses went hog wild, so she suggested a broad spectrum but tolerable antiviral like famvir before moving on to something stronger like valacyclovir. Then she suggested something like LDN, which I’ve not tried yet, to tamp down on inflammation because the cytokines are partyin’.

I’m now more than 7 weeks out since I tested positive for #COVID. I was vaccinated. I was boosted. I took Paxlovid starting *the day* I tested positive. I never got a Paxlovid rebound. And yet, I still ended up with #LongCovid. I had zero health issues before COVID. I’ve been diagnosed with a form of #dysautonomia called #POTS as part of my care at @MountSinaiNYC’s Post-COVID Clinic. Basically my autonomic nervous system, which controls things like HR, blood pressure, etc. in your body aka things you don’t even think about is messed up.