Been burnt out, but recently feeling energy to get back into the fight - much in part due to "new" #longCovid advocates who've been so great this year. Was also wonderful for @lisaamccorkell & I to spend time in virtual space w' @loscharlos, @cjmaddison, @useless_priest recently!
Sometimes the older/tired-er advocates (illders as @TheCrankyQueer says) are the ones I go to for energy, to be reminded of their hard-won wisdom of pacing and slowing down, that this has to be treated as a long journey.
Sometimes it's the kind notes I get, usually from doctors or other #LongCovid researchers or advocates or patients, which give me more energy and help me get through the day and do what needs to be done.
It is amazing to be in such warm, strong community with all of you.
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Big news: I was lucky to get tested for micro blood clots, & I have a lot of them! #LongCovid
Healthy control blood on the left. Mine on the right. The green is all microclots!
These clots are likely blocking oxygen from getting around my body & could explain many symptoms. 1/
I also have a bunch of hyperactivated platelets.
I'm officially on #TeamClots & believe it's a vital and immediate research direction for #LongCovid & ME/CFS.
2/
The amount of clots seem to be associated with the severity of #LongCovid. Of the 3 people I tested with, we guessed I would have the most because I'm generally more severe, and that ended up being true.
3/
#LongCovid can happen after a 2nd/3rd infection even if you recovered fine after earlier infections. Patient groups have known this for months, since many people are joining under those circumstances.
1/
#LongCovid support groups said that infections happened in vaccinated people, that Long Covid happened in breakthrough infections, that not everyone made antibodies, that some lost antibodies, & many other patterns that we saw months before the public. All of them came true. 2/
The same will happen with reinfections. They are not safe for everyone. People get #LongCovid after being fine on their 1st infection. But it will take likely at least a year before it's common knowledge, because the early warnings are not heard.
Thousands of people are getting #LongCovid each day, many of which lead to ME/CFS, POTS, & other lifelong illnesses. We need clinical trials & treatments urgently!
This is a big responsibility & I will do my best to represent our communities well. So many patients with #LongCovid & ME/CFS brought light to the illness & continue to fight for better research, resources, & treatment. We all deserve this recognition.
2/
"The following day, chronic disease advocates protested in front of the White House, arguing that #LongCovid and the related condition myalgic encephalomyelitis constitute a public-health emergency."
2/
“We’re in the middle of the greatest mass-disabling event in human history,” says #LongCovid patient and advocate @loscharlos.
And unless people wake up to the long-term consequences of COVID-19, it is “going to continue taking folks out like fish in a barrel.”
3/