Cynthia Adinig

@[email protected]
123 Followers
21 Following
32 Posts
BIPOC Long Covid & MECFS advocate. I am a marketing specialist and equity policy advisor. I developed Long COVID in March 2020. ​I have had a long career in community service and business, working as a marketing specialist for over a decade. I have worked with members of congress on Long COVID legislation and testified on Capitol Hill about my experience with racism in healthcare. I've been featured on TIME, Bloomberg, Washington Post, and much more.
WebsiteCynthiaadinig.com
Pronounsshe/her
Cynthia AdinigJan 26, 2023
Friday 10am ET I'll speak at the Best Practices for Treating Long COVID Summit alongside Senator @timkaine and HHS. A summit for providers. I'll talk about my recent ER trip & decades-long hurdles in #chronicillness Watch here https://www.facebook.com/SenatorKaine #neisvoid #DisabilityTwitter
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Cynthia AdinigJan 21, 2023
When people of color see me, an expert level patient advocate, be powerless to save my own life in a medical emergency due to #bias & ignorance, this furthers their disinterest in participating in #ClinicalTrials or routine care. No matter how much money we put into outreach.
Show threadCynthia AdinigJan 21, 2023
The same way men can't fully understand the nagging reality of assault that comes with being a woman, even my white chronically ill counterparts could never fully grasp how easily even routine healthcare can turn into the violent end of black lives. #neisvoid #DisabilityTwitter
Show threadCynthia AdinigJan 6, 2023
Another update: filed a complaint with patient relations. They will continue to be on my contact list until I see some changes.
Cynthia AdinigJan 6, 2023
Update: I'm home now. Had quite the experience last night which is why I had avoided the ER in spite of being in pain all over and a barrage of symptoms at home. Unfortunately, mistakes by staff have now prompted even more work for me to do today to make sure I safely stabilize.
Cynthia AdinigJan 5, 2023
So I'm in the ER because my long covid symptoms are in a severe flare. Making me react to even water touching my body and every food. I warned staff that I could have an allergic reaction to even prior "safe" items, meds etc. Sure enough I had a severe reaction to saline flush.
Show threadCynthia AdinigJan 5, 2023
of course they treated my reaction as if it was a panic attack, though it was MCAS then dysautonomia triggered from the saline. They waited over an hour to even give me an antihistamine, though I begged for antihistamine during and after. So now the plan to do IV meds hit a snag
Cynthia AdinigDec 4, 2022
Perfect timing after my last post on long covid, #mecfs and #adhd . I also have #eds and #mcas I believe mcas or other mast cell disorders are very underdiagnosed in long covid. I cant confidently speak for other conditions. But Im sure there's another overlap in those with MECFS. Something I'm hoping to help fix as I work in the research space https://www.forbes.com/sites/drnancydoyle/2022/12/03/what-do-adhd-long-covid-and-ehlers-danlos-have-in-common-meet-the-mast-cell/?sh=69472dd04ba0
What Do ADHD, Long Covid And Ehler’s Danlos Have In Common? Meet The Mast Cell.

For International Disabled Person’s Day, read below for an overview of Mast Cell Disease, how it is disabling and how to get help. It contributes to continued, low levels of sickness that can plague productivity, career growth and labor market participation.

Forbes
Cynthia AdinigDec 3, 2022
The more I look into #ADHD after having disabling symptoms that halted my ability to tackle simple tasks, the more I think I have had it before even getting long covid. My fast processing, off-the-charts memory and problem solving skills potentially masked it. Any #MECFS or #longcovid people want to chime in on their experience with ADHD? #NEISvoid
Show threadCynthia AdinigNov 30, 2022
Shout out to the work of organizations like @PlzSolveCFS , @MEActNet @MassMECFS for helping to lay the framework for long covid advocacy in research, policy and physician education. @Dysautonomia International has also been in the trenches with us, often overlooked pre pandemic.