Health equity, perinatal and women’s health, complex chronic conditions researcher #Neurodiversity #LongCovid #MECFS #Lyme #POTS @RenegadeRes @RemissionBiome
Sep 18 • 26 tweets • 3 min read
#HHSLongCovid launching a consortium on Long COVID.
RFK: Open a dialogue with frontline physicians, assess efficacy of their innovative therapeutics, find biomarkers, narrow constellation of symptoms to clearly define long COVID, and hear from patients about what is working.
Will be doing a similar roundtable next month on Lyne disease, per RFK.
May 28, 2024 • 22 tweets • 3 min read
I went to my neuropsych cognitive assessment (requested by my SSDI lawyer for my disability application) today and was denied entry. The receptionist claimed that my appointment was next week and that someone else was scheduled for today. A 🧵 /1
I very calmly and politely let her know that I entered the dates she gave me into my calendar while we were on the phone (on April 17th) and delayed medical treatments for a month to complete the assessment first. She offered me to come back on Thursday. No, I can’t. /2
Feb 27, 2024 • 8 tweets • 2 min read
I went to the dentist over a week ago for the first time in 3 years. I met with several different people and don’t know their roles. The dentist was kind and lovely. He was familiar with long covid and, unsurprisingly, found lots of inflammation. He was very familiar
with Sjogrens, but acknowledged how hard it is to diagnose, especially in FL. I could barely stand for the x-rays. I was shaking with adrenaline and anxiety. I had deep pockets and needed a deep/inflammation cleaning that was traumatic.
