Pinned
My favorite word is serendipity.
The word does feel whimsical and magical to me ... and the experience of it is so damn fun.
I don't think it is pure accident most of the time.
(Mindset figure from: austinwilliams.com/blog/how-to-bu…)
Tess Falor, Ph.D. | Renegade Research
15.5K posts
Tess Falor, Ph.D. | Renegade Research
@tessfalor
Joined January 2021
- Last night my husband asked why the labor shortage. I said, "hello? Long covid" & told him stats. He didn't believe & said that if the stats are right we would know >10 with it IRL. I know 2. Are ppl just not talking about it or don't know they have it?
- Raise your hand if you've been disbelieved, gaslit, humiliated ✋ For 18 yrs "Your labs are normal. There's nothing wrong with you." "You look healthy. There's nothing wrong with you." "Why do you keep coming in? There's nothing wrong with you." "It's impossible to have thatReplying to @TrueMECFS and @tessfalorWhat needs validation are the thousands upon thousands of patients who suffer daily and miss out on life, opportunities and deal with the the humiliation of outsiders looking looking for proof of that suffering because there's no blood pouring out. 1/
- I just looked up a dr on here & fell into an alternate universe. Everyone was laughing about #longcovid & saying it's just hysteria. I know a lot of people just aren't aware of it, but I'm actually surprised by how many MDs are openly mocking it. I guess I'm in a Twitter bubble.
- I just saw a post on Facebook about having anxiety and racing heart after Covid. She said that it was due to "mass hysteria" and "mainstream media pushing a fear narrative." Should I tell her it's dysautonomia and have a bunch of people jump on me about spreading fear? 😬🤦♀️
- An MD I know is looking for a new job. I told her she should specialize in ME/CFS & Long Covid, & that I could teach her more in 1 hr than 95% of drs know. 😆 She said that she has never heard of ME/CFS. 🤯 Now she asked me for papers related to Long Covid & exercise. Input?
- This spinal CSF leak conference has cots set up for patients to lie down while listening to the talks! 👏 I wish all conferences did this.
- 😭 I never wanted a career in medicine. I hated health class in high school. I would get light headed just from hearing the teacher mention anatomy. I loved SPACE & wanted to be an 👩🚀 But when I felt like I was nearly dying & was being told there was nothing wrong with me,The degree to which #MECFS patients are engaged with the intricate science of their disease is, in large part, a direct result of institutional and medical neglect and a trauma response.
- I had a meeting with someone yesterday who recently had POTS go into complete remission after taking antibiotics. Her cardiologist said it's known it can happen and is published. I'll have to search in the literature for that!
- I met w/ someone new on Wed. I told her I have HSD & mentioned EDS. She said, "my friend's daughter *thinks* she has that, along with like *10* other things!" I said, "it's likely she does..." She cut me off & said, "but, I think she..." I cut her off. "No buts. Believe her."
- Are you wondering what the trending hashtag #TheAcidTest is? #TheAcidTest is a worldwide patient-led #LongCovid #MECFS #VaccineInjured project using at-home devices, like GlucoRx & Edge, to measure lactate at waking & 1 hr after breakfast Story in 🧵
- What's happening with patients being told to take down posts from a conference that's happening about their condition is making me livid. I know how much energy it takes to live-Tweet. It's a labor of love for patients who aren't able to watch videos.
- Yesterday I overhead people complaining about a woman languishing at work & how they had to pick up slack for her. She has worked there for 30 yrs. At 1st I laughed along, then realized, "what if she has a chronic illness?" I bet there's lots of people just trying to hang on.
- I have so many questions about #MECFS #LongCovid #microclots #teamclots #MEspine #Abilify #EDS #HSD but can't keep track of them/remember them when I want to ask, so going to collect them here...for myself, and in case anyone in the #NEISvoid finds them and has input.
