Michelle R. Zimmerman, PhD #MIEExpert #LongCovid
@mrzphd
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To inspire passion, the unexpected, learning from failure in a new generation • Author • MVP • NCCE Trainer • #MIEExpert • #MicrosoftEdu • #ShowcaseSchool
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Thank you
@edtechdigest
for acknowledging me as a 2019 Global Leader. I’ve traveled, spoken, visited schools around the world & been visited by Global Education leaders, Congress Members & Ministries of Education at
#RentonPrep
. This week: speaking on
#AI
at
#ISTE19
.
#iflyalaska
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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
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Confirmation of what I suspected & couldn’t rule out for the past two years: I’m positive for microclots (green) and hyperactivated platelets (red). Resounding thank you - for the people who don’t give up on good science when people say it’s not possible.
@PutrinoLab
#SinaiStrong
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Today marks 2 years since I’ve been disabled from brain and vision damage, externally verified as disabled from J&J COVID-19 vaccine that was manufactured on the date FDA verified manufacture of J&J was contaminated. I was promised quality manufacture. My losses are severe.
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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…
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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. 🧵
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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
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@Theresa_Chapple
I would have loved, “you mean doctor?” :)
It bothers me that messaging still says: mask if you’re unvaccinated. So, the assumption is if you’re masking, you’re unvaccinated.
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@unserioso
@EricTopol
I’m at day 22 unrecovered. No underlying health conditions. Fully Vaccinated. No prior covid infections. 106.1 fever (still testing negative then). Took over 5 days of negative tests with symptoms before testing positive. Mine came from a proof of vaccination & neg test event.
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I loved life. These were me before disability. I took chances and didn’t miss opportunities because I never wanted to look back and wish I would have tried when I had the chance. I needed help walking again yesterday and today. If you can speak, read, walk, move: take the chances
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@loscharlos
What happened to “follow the data, follow the science”? There is data reported through scientific research & the response is: I hope it’s not true. (?) Good science asks hard questions & acknowledged when data disconfirms a hunch. It doesn’t deny, dismiss or hide data.
#longcovid
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I never thought I’d be so excited to see my reading grade level equivalent : 4.0. Why am I excited? Last year it was 2nd grade equivalent. People didn’t believe me it was really hard to read since vaccination because I have a PhD and a published author. This is brain damage. 🧵
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@EricTopol
@CDCgov
It seems it would be hard to make a public announcement after many people believe the pandemic is over and “we have the tools.” Naming it would have to acknowledge variants outran bivalent which is still being marketed as protective of the newest variants. Messaging conflicts.
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@PutrinoLab
@NIH
This is upsetting - your lab is among the best positioned to study this, with integrity, transparency and authenticity listening to patients. The absence of providing reviewer comments is also concerning. No way to appeal?
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Will people believe me now and allow me freely to say what happened to me without blaming me for the physical damage and disability I have endured? Is it safe now that FDA revoked authorization two years after contamination was verified?
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Early Hypotheses in looking at symptom and demographic data for Yale LISTEN Study comparing PASC/
#LongCOVID
and post COVID vaccine reactions.
Similar pathways may be triggered.
Join the study:
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3/ cleared to even /try/ low heels yet. I asked vestibular & physical therapist. After 19 mths of rehabilitation, I am starting to handle stairs without assistance all the time. I still need noise-canceling and binasal occlusion. Movement of bustling crowds ⬆️nausea + dizziness
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Algorithms help to delineate
#MECFS
,
#LongCOVID
,
#postlyme
, and post vaccine. Confusion matrix shows over 90% accuracy in these algorithms for identifying Long COVID in the mix of other chronic conditions.
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Last sunset of 2021. I had no idea I would become disabled from a J&J vaccine in March and the rest of my 2021 would be taken from me, losing so much. I wanted to see one last sunset in person. I am hoping my entire 2022 will not still be fully disabled still.
#NewYearsEve2022
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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..
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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
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If you have
#LongCOVID
, adverse events from vaccine or are a healthy control who wants to help, join the
@kindred_health
Yale LISTEN study
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I want to applaud
@VirusesImmunity
for her approach really highlighting data and asking hard questions, rather than just saying what people feel comfortable hearing, with humility, and listening to patients. This is what increases my trust.
#LongCOVID
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Mitochondrial disorders are more commonly thought to be genetic disorders. But did you know that dysfunction could be induced by toxins, medications, and lack of oxygen?
Oh...and Spike Protein can alter mitochondrial metabolism.
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I’ve been disabled since March 2021. I’ve been going through invasive, painful testing, giving my body to science for data ever since. It’s been over 2 years with NIH RECOVER. To date, no answers. No treatment. No recovery. But I did get this water bottle as a consolation prize.
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MECFS increased almost in parallel with
#LongCOVID
.
First Machine Learning paper on
#LongCOVID
&
#MECFS
came out almost 2.5 years ago. Non-classical monocytes are a major player. Flow Cytometry S1 in monocytes 15+ months still.
@VirusesImmunity
team corroborated this work.
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@krakenbragd
@Theresa_Chapple
@DrLeanaWen
Added frustration that you have to say you have a law degree. I resonate. I’ve had to say my degree and still how hard it is for a range of pandemic countermeasures. I’ve used the same response: that is not accessible. Thanks for adding that comment.
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Turns out what I did just to see what would happen already had clinical trial back up:
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For people who think myocarditis isn’t linked with J&J, it is and FDA updated.
It is not only mRNA:
#koolbeens
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@stormchaseguide
@MVGutierrezMD
I am among them. Over 300 pages of medical research, medical labs, quantitative data, submitted October 1, 2021, still no case number. The BMJ wrote about my case: with immense fact checking.
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I tried walking a bit more than 1,000 steps today, and felt more symptomatic. Used my pulse ox when I got home. 87%-88%, two separate readings. After HBOT, went back to 99%. It’s really frustrating that walking still results in this, 23 months later.
#medtwitter
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This is a shout out to
@PutrinoLab
and the incredible work of his team. I’m posting a few photos today and will update more another time.
#SinaiStrong
#longCOVID
I loved life. These were me before disability. I took chances and didn’t miss opportunities because I never wanted to look back and wish I would have tried when I had the chance. I needed help walking again yesterday and today. If you can speak, read, walk, move: take the chances
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I’ve used the neck one on my hands. This one is FDA cleared, correct wavelengths used in research, on medical grade silicone an can make skin contact. Portable. Can bring it in the car before going out in cold weather.
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It is an actionable solution, no side effects. Totally worth the investment to reduce pain and discomfort. And this one can be used other places, chest, top of head, arms, knees. It’s marketed for wrinkle reduction, but it definitely is doing more.
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@DrEricDing
I’ve been concerned about this when I realized the changes that were happening in cytokines, chemokines, TNF-alpha among others. I just didn’t have a source that made the official link.
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@YoDoctorYo
I had a false perception that people with MD had training to read medical research journals, more than I was with a PhD. I have been shocked how many say they don’t and “that’s beyond me. I’m not a researcher, I’m just a clinician.” I thought med school taught with research.
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Preprint includes healthy controls, convalescent controls, with a focus on mild COVID cases, small percentage of hospitalized patients. 400 days +/-. Found increase in monocytes in
#LongCOVID
, reduction in CD4 T-Cells and exhausted CD4 & CD8. IL2, IL4, IL6 elevated.
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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🧵
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4/ There were known treatments, medical interventions and crucial, time-sensitive treatments that could have mediated and prevented the disabilities I have today because of inaction, even while pleading for help. Something is very very wrong. It should no longer be a concern for
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This one is a huge thank you to
@drbeen_medical
for acknowledging people like me who have been disabled by J&J and for not giving up looking at mechanisms of action and bringing explanations for latest published research. He has pointed me in directions when my care team shrugs
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@DrEricDing
I have been getting bashed by parents for my decision to not change our universal masking policy. Some say: “But
@CDCgov
said we don’t need to mask and Covid is over.” Families are confused by the messaging that went out.
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3/ I’m still finding it difficult to comprehend that people are made to “prove it” & when they find experts to review records that are plainly obvious, there is no action to correct the records that have impacted the entire course of my care and insurance denials for over 3 years
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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.
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@PutrinoLab
@MaayanLevy_Lab
If 90% of serotonin is in the gut, and it’s altered in Long COVID, I’m wondering how much of neuro post Covid is gut-brain axis
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It’s my 210th HBOT session (I’m in HBOT posting this). 790 days since J&J. How do I celebrate survival and persistence? By joining
@drbeen_medical
to talk about
#mitochondria
and what quantitative data shows. 6pm PST
#KoolBeens
#medtwitter
#LongCovid
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@HaveYouHadAbeer
@DrYostradamus
People used to flat ground snow and ice don’t understand cities built on hills. They don’t understand physics when they mock Seattle for shutting down with snow and ice.
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So thankful to have
@VirusesImmunity
asking hard questions and looking for answers. She’s doing amazing work to advance knowledge and help people.
"Akiko Iwasaki and the fight against COVID"
'How a leading Yale immunologist reworked her entire lab at the beginning of the pandemic--and became one of the most prolific and visible COVID researchers'
"The problem with ME/CFS was you couldn’t...
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Seem to be losing protective structures that coat neurons.
Mild respiratory only can lead to prolonged changes in central nervous system. Direct infection of CNS is not required to lead to neurologic symptoms.
Live now:
#CovidIsNotOver
#LongCovid
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I had 6 medical appointments back to back yesterday, and today another type of qEEG as a new baseline for yet another approach to recovering lost function. I’m not giving up. (Always leaves marks for hours).
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@unserioso
@EricTopol
Urgent care sent me to ER because fever kept staying at 103.3 with fever reducer, found tachycardia & lower O2 than they wanted to see. Over 58 people I know of (likely more) tested positive over 5 days later, most had two boosters. People I know, double boosted relatives died.
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@SaraAna66550269
@BerkeleyJr
@brucep13
My symptoms that presented like POTS also went away after Maraviroc and statin with
@brucep13
&
@DrYostradamus
so by the time I had to wait for months for Tilt Table/Autonomic function test scheduled before I started treatment, my postural orthostatic tachycardia were resolved.
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5/ J&J that it May hurt sales or confidence in the product, because 1) CVST was linked to J&J which was 2) revoked by FDA for public health, safety reasons, 3) US Gov ended contract with manufacturer. What does that leave? Disabled people harmed, without appropriate medical care
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@AlisaValdesRod1
@BostonGlobe
@fitterhappierAJ
I was coming to point to
@brucep13
@YoDoctorYo
also, except that they sequenced the genome and have a lot of detail worked out. Presented at
@Georgetown
:
@IncellDx
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@neganova_alina
@PutrinoLab
@VirusesImmunity
@hmkyale
@kindred_health
@MountSinaiNYC
@IcahnMountSinai
@brucep13
Dr Putrino’s lab, Mount Sinai Hospital
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@PutrinoLab
@NIH
This is unfortunately very consistent with my experiences interacting with multiple NIH contacts over the past 16 months. I have new perspective of NIH. Now seeing what your lab is experiencing confirms it’s not just me. I’m heartbroken for you & all who would have benefited
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@planet4589
We thought it was a plane exploding because it didn’t look like a meteor, and from our perspective was in the line of sight of flight paths from
#SeaTac
but we saw people posting it was a
#meteor
. Thanks for posting this.
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@AmandaB55744931
@DrGrahamLJ
@PutrinoLab
Test for nucleocapsid antibodies. If positive, there’s a pretty good indicator you had
#COVID19
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March 14, 2021, marks the day my life & career ended. I still have no prognosis, no effective treatment, my care team has no guidance from experts & all research has stopped because FDA revoked J&J. A few days ago, NIH verified my brain injury was from J&J. Still: “it’s too new”
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I was one who reached out to NIH starting in April 2021 asking for help and was dismissed. I found
@brucep13
&
@YoDoctorYo
5 months later and they showed compassion, believed me, and allowed me to take the cytokine panel.
Thank you
@drbeen_medical
.
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It’s true. From not being able to speak or move even when I tried, once I tried to walk again, I was running into walls. Join
@drbeen_medical
and me in 30 minutes to hear why.
#koolbeens
#covid19
#longcovid
#edchat
#ISTE
#MIEExpert
#MVPBuzz
#AI
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I was using Photobiomodulation, Transcranial, and decided to try on my hands, for no particular reason. It felt better, but I didn’t know how to describe what felt different. After several rounds, I was outside in cold in November and my hands were warmer than people with me.
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5 years ago today, I took this picture in the National Gallery of Victoria. Little did I know how well it would capture what can’t be seen, but only understood by those who survive and persist living like this.
#LongCOVID
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Dr. Mobeen Syed has been reviewing medical research on
#COVID19
and
#LongCovid
all through the pandemic. I am thankful to be invited to a live conversation at 6 PT.
#koolbeens
, great news 🎉🎉🎉
Michelle Zimmerman will join us on Tuesday (5/24/2022)
Time: 6:00 pm PT
YouTube
#KoolBeenGuests
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@TiferetSE
Thank you. I’m unwilling to go through so much suffering without contributing to science. I’m in over 10 studies.
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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)
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Thank you
@seattletimes
for caring about Seattle residents. As a
@UWalum
I had no idea how much I would need all the training in neuroscience, pre-med, and research skills in the past 3 years.
@UW
gave solid training in ethical treatment of human life.
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@dianaberrent
@DrEricDing
@brucep13
has been showing up. His work is getting replicated and others are showing the same abnormal cytokines and T-Cell changes he’s been saying for going on 3 years. Some doctors who care and show up are getting shut down. That’s unfortunate, for a lot of reasons.
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Day 716. Infrared photobiomodulation in Hyperbaric Oxygen Therapy
#171
with noise canceling ear buds.
#HBOT
#medtwitter
#longCOVID
#MicrosoftEDU
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This is
#TheGreatDebilitation
.
A massive study with global data, published Dec 1, 2022, showed nearly half of those who had
#COVID
still had symptoms 4 months later.
#COVID19
#COVIDisNotOver
#LongCovid
#edchat
Nearly half of COVID patients worldwide still have symptoms after 4 months, according to a giant new study
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Microclotting may be part of
#LongCOVID
. Mitochondrial dysfunction may also be impacting oxygenation.
Live now with
@itsbodypolitic
and
@VirusesImmunity
:
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@EricTopol
@WesElyMD
This then also provides logical explanation for those suffering neurological impact from inflammation following vaccination with no viral load & identical symptoms. If inflammatory response is similar following a blunt force trauma or virus with similar response, it makes sense
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I thought it was a fluke, but I tried it several other times. Then went without using it for a while and started having the same thing happen with my hands in cold. Started again and my hands handled cold weather again. It’s not a fluke.
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@DrEricDing
Is there any potential that
#longCOVID
is making it harder to fight off diseases like this? Or does this just seem to be coincidental occurrence with these things emerging?
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So many hours of my life in here. Hyperbaric Oxygen Therapy temporarily, dramatically decreases nausea and burning pain. In here, it’s slightly less difficult to think. I listen to
#AI
read research papers to me like this:
I have lost visual imagery.
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I shared this three years ago. Producing detailed tributes to wrongness is part of science. Not acknowledging wrongness is not good science. Failing to update for the public what has been verified as what went wrong is not transparency. I am more impressed by good science.
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(4)“CCR5 antagonist…for modulating the immune system by repolarizing macrophages to get away from making cytokines that destroy tissue…statins block binding of S1 to endothelial cells, preventing them from vascular inflammation…source of many symptoms of
#LongCovid
”
@brucep13
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If you’re
#LongCovid
or experienced post vaccine adverse reaction, please join
@kindred_health
and be part of
@Yale
LISTEN study with
@hmkyale
&
@VirusesImmunity
. I’ve hit month 17 unrecovered from J&J, still fully medically disabled. High antibody levels
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I’m excited to contribute for this one - on Valentine’s Day. Yale LISTEN study with
@kindred_health
You can join too - still need more healthy controls also!
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If you did not get a chance to hear Dr.
@brucep13
, Viral Pathologist, speak live to the Senate in Rome, you can see some clips here.
#COVID19
is one of the most complicated viral diseases. “We have to apply some of the same principles we apply in cancer.”
@IncellDx
@CDCDirector
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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
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Have you tried
@HoloLens
yet? Reactions are priceless.
#MicrosoftEdu
#HoloLens
#ISTE17
#PresenterOfISTE
#NotAtISTE
#MixedReality
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@gezmedinger
This is helpful. My labs for mitochondrial dysfunction & lactic acidosis near peak exertion are equivalent to early stages of cyanide poisoning (before death) and carbon monoxide poisoning. I describe that it’s like those each time I attempt exertion followed by a new concussion
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As a RECOVER participant and researcher, I can say from the inside that the tests chosen are a mismatch for the biological mechanisms and will appear inconclusive, just like an unremarkable leg x-ray showing no broken bone would not reveal cardiac conditions.
The NIH has finally launched clinical trials almost 3 years after the agency received a $1 billion mandate from Congress to study and treat
#LongCovid
. But scientists say the trials are unlikely to deliver meaningful treatments.
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For all those of you who’ve wondered, my blood is among the data in this study. I am one of the individuals that S1 was found in my blood about 6 months following a single dose J&J with NO virus, bacteria, fungus - no infection, but identical symptoms to
#LongCovid
& neuro-damage
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@thane_black
@brianvastag
I’m one of the participants in the study. The flow cytometry results checked about 6 months after my single dose J&J still found S. I suffered neurological damage, including vision damage and have been fully medically disabled since, speech, physical, vestibular & vision therapy
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Today: 2 years of being prescribed binasal occlusion for brain injury that went undiagnosed, unrecognized (and not verified) for over a year. During that time, damaged vestibular system relied on damaged vision, causing far more problems, compensating.
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Here's our US Team headed to
#Singapore
.
#Road2E2
#USAE2Crew
#MicrosoftEdu
#MIEExpert
#ShowcaseSchool
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Historic event happening now - LISTEN study on
#LongCOVID
@kindred_health
- this is what I love seeing
#DesignThinking
in process. It starts with empathy. It continues through iterations of design and thinking differently about how research is done.
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I’m still disabled, not cleared to return to work. I’ve been fighting hard to recover with therapies (speech, vision, vestibular, PT), HBOT, infrared light, a range of other treatments to get back to my students. One painted a portrait of me. It means more than an
#AI
portrait.
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I’ve been getting questions about the glasses. Brain injury has damaged my vision. I lost peripheral vision and my eyes no longer fuse images normally, visual midline shift and other visual damage. It’s called binasal occlusion. I didn’t choose this.
Today: 2 years of being prescribed binasal occlusion for brain injury that went undiagnosed, unrecognized (and not verified) for over a year. During that time, damaged vestibular system relied on damaged vision, causing far more problems, compensating.
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It may be hard to comprehend, but this is aftermath after talking. As much as I’d love to give each person who asks a one-on-one synopsis about what I talked about in the video, I 1) lose memory and can’t remember what I said, 2) the video is archived
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For more, read this thread.
“We’re very early,'
@PutrinoLab
says.. But every sample from
#LongCovid
patients has revealed
#MicroClots
."
"They are not capable of clogging large vessels.. but they can significantly affect organ function."
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This was me 9/13 another year, before being injected with “safe and effective.” I loved running. The other 3 are me trying to walk 9/13/22. I couldn’t stand. Nausea, dizziness, head pain, chest pain, gait instability, worsened neuro & vision symptoms, including light sensitivity
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