For all who followed me pre-pandemic, you know my focus included translating research into practice, making complex technology & science topics accessible to children & adults. Disability took my career. I’m unwilling to suffer without helping advance science & solutions. A 🧵1/

https://twitter.com/mrzphd/status/1434979263963287554

2/ Followers watched my posts shift from #edtech & #AI to #medtwitter & #LongCOVID spring 2021. My research background in neuroscience from @UW, parallel to translational sciences (applied to education). I deeply understand translational sciences approach to #LongCOVID research.

https://twitter.com/mrzphd/status/1796378902983778364

For everyone out there following my case, a radiologist reviewed my April 2021 brain MRI per my current Neurologist suggestion. The radiologist said it was clearly an undiagnosed case of cerebral venous sinus thrombosis, (J&J covid vaccine). I received no medical intervention 2/ I brought the information to me care teams, nothing has been updated in my records in the past 3 weeks, and the only action taken was placed referral for stroke rehabilitation, which I was just told may take another year to be seen (which will put me at year 4 since the event)

I’ve not updated in awhile. Took over 2 yrs to medically verify acquired ataxia. It’s not just left sided weakness or deconditioning or vestibular or vision damage. It’s loss of motor control pattens. My PT & Speech therapist have been investigating more. mayoclinic.org/diseases-condi…
I had no problem with muscle coordination, eyes, or any limbs. Not genetic. It was abrupt & acquired, but severity was masked from so much compensation I’ve been doing thanks to years of dance training, teaching, & social dance, all the way up to day before. Please, medical 2/

Thank you, #ISTELive for including me with ADA, allowing me the shortest possible 5 minute IGNITE talk on the Mainstage. Considering I failed my medical 6 minute walk test just a few days before at Harborview Medical Center, ISTE is serious about inclusion. I had help off stage🧵
There is an entire team behind the scenes that makes it possible to contribute, despite limitations. Even though I have not been medically cleared to return to work following severe brain injury and vision damage. I have a great Physical, speech & vision therapist who worked

This is horrible - up to 81 and 4 deaths. It's good @CDCgov acted fast and @US_FDA urged people to stop using eye drops even though they are only suspected and not confirmed or proved to be the cause. This is as it should be.

msn.com/en-us/news/us/… We know it is possible to act well & quickly, & alert medical professionals. My question is why is the same respect not being given to J&J survivors who received lots manufactured during verified contamination? Among an informal search, I have located 81, and 3 verified deaths.

Sharing this tool because I'm getting asked the same kinds of questions since going live with @drbeen_medical when people say they'd prefer me to just tell them instead of looking up a website.
Good news! #AI can replace me for that! Here's an example 🧵
youtube.com/live/SsBhHMb0U… 2/ I took a screen shot to show how you can ask @bing copilot the same question you ask me about tests I mentioned and you can an instantaneous response instead of waiting for a response from me. It even has footnotes with direct links to the part of the content in the webpage

I would really like #MicrosoftLearn to update #accessibility learning courses to include cognitive dysfunction from #LongCOVID. This is going unrecognized in classrooms and should span #SEL and approach to learning design and applicaiton of #AI.
#ShowcaseSchool #MIEExpert learn.microsoft.com/en-us/training…

A year ago today, this was my hand. Negative for autoimmune conditions. I couldn’t rule out microclotting. I knew there was vascular inflammation and elevated markers for platelet activation. Now, I know. So many things can happen when blood flow is blocked. Photobiomodulation… Has made a marked difference since starting it on my hands, that, and interestingly syntonic phototherapy. When heat does nothing, both of those do. And even though microclotting is still there, I’ve not had it this bad since starting Photobiomodulation.

Another glimpse into NIH RECOVER study. This also means more data for Yale LISTEN study as they use @hugohealth @kindred_health to gather medical records. I’m learning a lot about what is capturing effective data & what is missed. My case made researchers aware of gaps.#LongCOVID 2/ during the 6 minute walk test, they realize @NIH provided no space for notes or to identify gait. Within 3 minutes, they noticed me tipping, gait instability (when I noted vision and burning pain in my head and nausea). None of that is captured. Yet, exertion amplified neuro

For those stating that vaccine adverse data is incorrect in VAERS, here is the explanation from VAERS I received a few minutes ago. The public and researchers are not allowed access to verified or additional documentation confirming severe adverse events, including disability🧵 2/ Why does this matter? When researchers make valiant attempts to capture safety signals, all they have to go on is an initial report that does not include follow, evidence of verification, or corrections to reports that have been incorrectly inputted. For example, mine states

I was assured that an adverse event report was made on my behalf at the time of injection. VAERS could not locate it when I requested. King County provided me a number that they said was mine, but it goes to a report in 2009, a male in New Jersey. In 20+ months, no evidence. 🧵 2/ accurate reporting of severe adverse events is crucial to science. Why? Analysis is only as good as data collected. When data is omitted, analysis cannot be correct. When data is not collected, things like this occur & it undermines trust in science nbcnews.com/health/womens-…

This photo came up in my memories. This day, before brain injury, I could walk in heels, look at my phone, with a computer bag on my shoulder with a bustling NY around me and still focus and balance. I didn’t appreciate how much my brain was processing in that moment. #LongCOVID 2/ For me, wearing heels, balance, was nothing. I danced and taught dance. I called out left and right for people who I was mirroring, and now, with verified parietal lobe damage, left-right confusion is real. Tell me to raid my left hand and my right goes up. I’m not medically..

As a school leader, I followed Public Health - Seattle & King County guidelines. This included the statement of needing to get all school staff vaccinated by the end of March 2021 in the message dated March 4, 2021. The opening: "This is an exciting - but also confusing - time"🧵 2/ those of us who took these messages very seriously and followed to protect others, to "prevent transmission" to our students, their families, reduce burdens on frontline medical professionals, and those of us who were crucial in modeling and leading new innovations in #Science

Resuming HBOT.

nature.com/articles/s4159… @Nature

Earlier today, SpO2 dropped to 74% stayed until I stopped moving. HBOT 10 min later. SpO2 increased to 100%, stayed high. I’m headed to try to walk an hour later to see if SpO2 drops again or stays stable. #LongCovid #medtwitter 2/ I started trying to get pulmonary function test in 8/22 based on tracking SpO2 drops w movement & ⬆️ neuro sx. Earliest I’ve been told I can get in is 1/23 (5 mth wait). Supp Oxygen & HBOT decreases symptoms. Insurance needs to cover @WA_OIC #LongCovid
nature.com/articles/s4159… twitter.com/i/web/status/1…

Exposed #COVID19 7/26/22. 1st symptoms few days later. 106 fever, cough by 7/4/22 still test neg on PCR & rapid. Tested pos evening of 7/5/22. Some sense of smell started coming back last week. 10/6/22 RECOVER study: Severe microsmia. I recognized 4. Guessed others. #LongCOVID🧵 2/ There's a distinction between neural injury fr virus vs vaccine. Loss of smell & taste only occurred following virus. Documenting brain injury before & in the absence of virus but with spike protein evidence fr vaccine (high neutralizing antibodies) vs virus, some similarities

🧵If a person horrifically injured in a car crash demanded safety laws be followed and manufacturers ensure working seatbelts & airbags & reporting & recalls when faulty, we wouldn’t call them “anti-car” & tell them they are responsible for the deaths of others if they speak. 2/Nor would we get angry at a parent who learned their baby was sick in the hospital and baby food needed to be identified by lot (that’s why lots exist) as from a plant, known contamination occurred - we don’t label these parents “anti-baby formula” fda.gov/news-events/pr….

This was my second data collection.
Baseline 7/14. Extra data collection 8/8 to capture a variable & baseline after variable, 1st official 8/29, 2nd 9/29. Red lines are statistically significant changes on coherence networks graph. wavimed.com/about-wavi/

#LongCovid #MedTwitter 2/ WAVi set up, confirming signal strength (& evidence of dent in forehead in case questions if low voltage results due to poor connectivity: it wasn’t). Like many #LongCovid, cognitive load tasks are draining after full effort to perform. Amplified neuro sx, notice SpO2 ⬇️after.

As of 9/22/2022 update kingcounty.gov/depts/health/c…

The vaccine I was administered & assured on site prior to injection “has no adverse reactions, not even anaphylaxis because there is no PEG” has been pulled from distribution & no longer offered. I am still disabled 18+ mths. 🧵 2/ I called the # from above, hoping by now, someone knows who I can contact to report adverse health event in Washington State

apps.leg.wa.gov/RCW/default.as…

But no one knows who is responsible for mass vaccination sites. It’s not publicly available info, not even lead nurses know.

https://twitter.com/mrzphd/status/1573044137896865792

Earlier hunch: people w #LongCOVID symptoms must not produce robust antibodies or it must be because there is ongoing viral load. My case is a counterexample for both hunches. Data 1 yr apart. Vacc vs virus.



See my 🧵 for more:

https://twitter.com/mrzphd/status/1557874745550315520?s=21&t=R5fjsSD6jMVXus6ZbyT_TQ

2/ Rapid, robust & persistent IgG from single J&J. Neg IgG & IgM (S) pre-injection & neg PCR pre injection (repeated post injection, neg PCR, pos IgG, then multiple quant), continually neg nucleocapsid until confirmed #COVID19. T-Detect neg vacc only pos after virus. @serimmune

Gathering data that disconfirms comments made re: severe J&J, claiming it was impossible S1 & Sx could be from injection alone. When I showed neg nucleocapsid, people said I probably didn't seroconvert. I showed neg T-Detect - Said "not sensitive enough"🧵
t-detect.com/covid-19/for-p… 2/ I've added screen shots of T-Detect during severe reaction to J&J, neg to SARS-CoV-2. My first case of #COVID19 & 4 weeks later, T-Detect positive for SARS-CoV-2, meaning if I had COVID-19 before, it would have shown for me. Myth busted. The "you must not seroconvert" busted