POTS Advocate | “Realize that people expend tremendous energy merely to be normal” - from Camus

Joined September 2016
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Replying to @sarasteinmd
Some patients are out to a year or getting close and doing very well, we have a couple that by the sounds of it could do with a week top up treatment. We have found around a 10% cohort who have a consistent blunted response. But they are all linked to a specific CNS structural abnormality, but they do still respond, and some needing top up form part of the identified 10% CNS structural pathology. We recently had one adverse event of serious concern, but in a patient with severe Danlos Syndrome, so not so surprising considering the severity of the co-morbidity, it was handled quickly and they're back to treatment. So out of 50 patients, the results are looking good. Anything that returns near to normal functionality for a year should be considered a major success, and we're well on the way to achieving that goal.
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Dean Cheramie retweeted
Tomorrow at August 6th 2pm PST | 5 pm EST, join Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, and moderator Charlie McCone for a discussion on how to best manage and treat post-exertional malaise (PEM). Learn about the different types of PEM, how to navigate a crash, and interventions for reducing PEM. Sign up here: ow.ly/FLoJ50ZtEba Can't make it? We will be posting the webinar recording on our YouTube channel after the event. @PutrinoLab @BatemanHorne @jencurtinmd @loscharlos @patientled
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When I die please bury me with my medical records so god knows I've already been to hell.
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My friend, @kevinsachamp, you need more followers. Team Real Science Rules!
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Dean Cheramie retweeted
An Update from Tokyo ❤️ First, thank you to everyone who has prayed for me, donated, shared my fundraiser, or reached out with encouragement. Your kindness has made it possible for me to begin treatment here at Edogawa Hospital in Tokyo. I have now completed my first Double Filtration Plasmapheresis (DFPP) treatment and four Stem Cell Growth Factor treatments. Many of you have asked if I’m feeling better. The honest answer is…it’s still too early to know. Some patients improve quickly, while others need more time. I came to Japan knowing there were no guarantees, but after exhausting nearly every treatment available to me in the U.S., I knew I had to keep fighting. Because of your generosity, we’ve raised about $12,000, and I have also made the difficult decision to cash out my retirement savings. Together, those funds will cover approximately two weeks of treatment. However, my physicians at Edogawa Hospital have recommended the full four-week treatment protocol, as they believe it gives me the best opportunity for improvement. At this point, I simply don’t have the financial resources to complete those final two weeks. Just two years ago, I was working full-time as a physician assistant, volunteering to improve the health of first responders, hiking with my family, and walking my son to school. Today, making it through a shower or a medical appointment can take everything I have. Long COVID has taken my career, my health, and much of my independence—but it hasn’t taken away my hope. If you’re able to donate or simply share my fundraiser, I would be deeply grateful. Every act of kindness brings me one step closer to completing my treatment. If you could do just one thing for me today, would you consider sharing my story? ❤️ Sometimes one share reaches the one person who can change the course of someone’s life. Thank you for believing in me and standing beside me through this fight. With love, light and gratitude April gofund.me/b284be827 #longcovid #microclots #mccairnedogawaprotocol #vaccineinjury #microclots #chronicillness #firstresponders #PhysicianAssistant #MedicalFundraiser #COVID19 – at Edogawa-ku, Tokyo
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Dean Cheramie retweeted
Hi 👋! Since I’ll be sharing my experience with the Edogawa Protocol in October, I thought I’d introduce myself. I’m Kira, a data analytics director, former scientist turned former science teacher, and researcher at heart. I’ve been living with a complex chronic illness since 2020. Before getting sick, I was active. I loved international travel, salsa dancing, boxing, Pilates, hot yoga, and taking long walks along the river with my coonhound. Today, my life looks very different. The symptom that has impacted me most is profound fatigue that isn’t relieved by rest. Physical activity, stress, travel, and even social events can leave me depleted for days. Over the years I’ve also struggled with exercise intolerance, cognitive dysfunction, unrefreshing sleep, dizziness, elevated heart rate, poor recovery after exertion, inflammation, IBS/SIBO, gastroparesis, intense weight gain, hormonal abnormalities, and a long list of symptoms that seem to fluctuate without obvious explanation. One of the strangest parts has been watching my body lose capacities I once took for granted. I used to spend weekends exploring my new city. Now I sometimes have to plan my week around a single commitment. I used to say yes to opportunities. Now I often have to calculate the physical cost before agreeing to something, even things I want to do. I’ve missed weddings, baby showers, holidays, celebrations, and important moments with people I love because I simply didn’t have enough energy to be there. I’ve also had to decline professional opportunities that I worked years to earn because I knew my body couldn’t sustain them. Like many of you, I’ve spent years searching for answers. I’ve worked with specialists, undergone extensive testing, tried numerous treatments, and spent countless hours reading research in an attempt to understand what happened and what might help. Because of my background, I’ve approached this journey with a mixture of hope, curiosity, and skepticism. I try to follow the evidence wherever it leads. That’s ultimately what brought me to the Edogawa Protocol. I plan to share my experience openly and honestly, including the parts that don’t fit the narrative anyone wants to hear. My hope is that my journey can provide another useful data point for patients trying to make sense of their own. If any of this resonates, I’d love to hear your story as well. Thank you for your unexpected showing of love and support to a complete stranger!
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i met Kelsey Yesterday and when she showed me the picture below of what supplies she had to bring to take care of her central line while here in Japan immediately infuriated me Kelsey was also an ER nurse & I know she will do great with her treatment tomorrow as her symptoms and ailments were very similar to mine especially with the POTS Our goal is to get her out of the wheelchair and to get her central line discontinued before she goes home @kelseyshields08
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Dysautonomia: Medicine's Underrecognized Condition Autonomic dysfunction extends beyond POTS or orthostatic intolerance. It is the driver of neurological dysfunction, disrupting cognition, cardiovascular regulation, gastrointestinal function, sleep and quality of life.
🤖 Made with AI
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Dean Cheramie retweeted
I’ve been begging you for years to open regional vax injury clinics and staff them with knowledgeable scientist not the idiots I encountered for the first 2 years of my vax injury. I’m self reported in VAERS after seeing many specialists, PCP & ER docs. Cleveland Clinic should be leveled to the ground. I had to go to Japan to any help and I’m so glad I did because I feel amazing after 1 week of treatment and I’ve got 3 more weeks to go. I sat in treatment today with 5 other Floridians who are disabled by this bioweapon. I was abandoned by a country I was brought up to cherish. I am patient #43 edogawadfpa.com
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To everyone who ever said I don’t “look sick”: I’m constantly running PretendImOkay.exe in the background. It eats up at least half my RAM and is why my system keeps crashing.
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40 patients severely injured by the COVID mRNA shots have flown to Japan to have amyloid microclots filtered from their blood + stem cell growth factors. Their response has exceeded expectations and brings hope to the injured. youtube.com/live/LVKaQhfgFUY…
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Join us tonight.... live on X.... 7pm CT We'll hear an update from @KevinMcCairnPhD, @HouseLyndseyRN, @CharlesRixey and @EdogawaPatients on a life-saving treatment for the vaccine-injured in Japan.
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Dean Cheramie retweeted
The McCairn-Edogawa Protocol is based on the research of Dr Kevin McCairn in collaboration with the Edogawa Hospital in Tokyo. Long Covid patients, who have been treated like burn pit victims for the past six years, are flying to Japan on their own dime for treatment. Hats off the Americans for showing such pioneering spirit🇺🇸 and to the Anglo-Japanese 🇬🇧🇯🇵 lab/hospital collab who persevered despite getting zero institutional support.
Like test raccoons ready to be shot in to space, our treatment program for long term covid and vax injured has reached a size where we can pull some insights into Pre vs Post (end of treatment) measures. Those intrepid raccoons with little to no medical support anywhere else, are left often with just one metric to assess their illness; presence of high levels of circulating IgG to the spike protein. The figure shows SARS CoV 2 Ig Total measured by MAGPIX before treatment and after completion of our 4 week DFPA + SGF protocol (n = 38). Circulating anti Spike antibodies reduced across the gaze (Wilcoxon signed rank, P < 0.001). This accompanies the improvements many patients have already chosen to share publicly on X, including recovery from severe POTS, autonomic dysfunction, post exertional malaise, brain fog and other neurological and cardiovascular symptoms. We are also observing reductions in amyloidogenic aggregates, normalization of inflammatory cytokines, and objective improvements across multiple biological systems. These are hot off the press, from an ongoing programme; but as levels of anti-Spike Antibodies is a frequent question, for the immediate public interest, here is what we see. Without the treated, and public support this would not be possible. Share it forward so we can evade the censorship. Let the chips, or in this case antibodies, fall where they may. #McCairnEdogawaProtocol @shonyan @Jikkyleaks @CharlesRixey @Kevin_McKernan @KenCaptn20114 @HouseLyndseyRN @Fynnderella1 @Christine00k @CoyoteSanctuary @CatsRule2023 @JesslovesMJK @MaryBowdenMD @MaryanneDemasi @JohnBeaudoinSr @AnneliseBocquet @KennyCarmody
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Dean Cheramie retweeted
Four years ago, I was an athlete. Today, I’m largely bedridden with debilitating heart and autoimmune issues that began after the COVID vaccine. In a few weeks, I’ll travel to Japan for the McCairn Edogawa Protocol in hopes of getting my life back. I’ve tried countless treatments. I refuse to give up. Please keep me in your prayers as I begin this journey 🇯🇵❤️ #vaccineinjury #chronicillness #hope
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Dean Cheramie retweeted
Aaron Siri
@AaronSiriSGJun 16
Below is the letter we just sent on behalf of @ICANdecide, @React19org and others to current CDC Acting Director, @DrJBhattacharya, regarding $1.5 billion contracts for Covid-19 vaccines. I am confident Dr. Bhattacharya and @SecKennedy would prefer to direct these funds toward treating and compensating the vaccine injured. I hope the White House will let that happen. As a country, we should take care of those harmed before we rush forward harming others. Here is the text of the letter (with link to the original below): Dear Dr. Bhattacharya, We write on behalf of ICAN, React19, and numerous others to express our deep concern and disappointment that CDC has agreed to purchase $1.55 billion worth of pediatric and adult Covid-19 vaccines from Pfizer and Moderna, and to raise serious concern regarding a potential violation of federal law.[1] For the millions of Americans harmed by these products, this decision is deeply painful. Rather than directing resources towards treating those whose lives have been devastated, CDC has chosen to further enrich Pfizer and Moderna. The vaccine-injured deserve acknowledgement and care—not abandonment. The tens of thousands of individuals with serious injuries who have contacted our firm alone, and the over 40,000 members of just one group, React19,[2] with serious injuries represent real people whose suffering demands recognition. To allocate more than a billion and a half tax dollars to Pfizer and Moderna while offering those injured by their products nothing is a profound betrayal. We struggle to comprehend how CDC’s current leadership can continue to disregard, among others, the following established facts: •CDC fought in court for over 2 years to prevent public disclosure of data which showed that over 7% of the 10 million V-safe users reported needing medical care after a Covid vaccine, on average 2 to 3 times each, with over 70% of those medical encounters resulting in hospitalization, emergency room visits, or urgent care.[3] •The fact that FDA fought for years to hide data, recently released, showing that when FDA adequately conducted empirical Bayesian analysis internally, it revealed significant safety signals that were hidden from the public.[4] •In the clinical trial for Pfizer’s Covid-19 vaccine, there were 21 deaths in the vaccinated group and 17 deaths in the placebo group—meaning more deaths occurred in the vaccinated group—during the same time period, and where the placebo group contained more participants than the vaccinated group.[5] •Those seriously injured by this product have been left without recourse because pharmaceutical companies have been granted complete immunity under the PREP Act, while the Countermeasure Injury Compensation Program (CICP) remains woefully underfunded and structurally designed to deny compensation (only 0.39% [56 of 14,152] of COVID-related CICP claims have been compensated, with an average payout, excluding three outliers, of a miserly $5,052.57 per claimant)[6]—leaving the injured with nowhere to turn. •Five years after assuring the world these products are safe, the manufacturers still require PREP Act immunity for the very harms they claim will not occur—an obvious contradiction that requires suspending reality and reason to believe. Until PREP Act immunity is lifted and the full scope of harm is properly accounted for, the CDC should not direct over a billion and a half dollars to Pfizer and Moderna. These funds should instead be used to treat and compensate those who have already been seriously harmed—the people who have been waiting far too long for help. The people who the CDC assured this product was safe. CDC should cancel these contracts on the basis that it would be the moral, ethical, and compassionate thing to do. But if it won’t do so on those bases then, in order to confirm these contracts do not violate federal law, and to avoid litigation, please confirm forthwith that the procurement contracts with Pfizer and Moderna were not in any manner related to the Vaccines for Children Program (VFC), and that absent Advisory Committee on Immunization Practices (ACIP) approval, they will not be part of this program. As you are no doubt aware, absent approval from ACIP, the vaccines procured from Pfizer and Moderna pursuant to these contracts cannot be procured, distributed, or administered through the VFC, and any such conduct would be a clear violation of federal law.[7] As provided in Section 1928 of the Social Security Act (42 U.S.C. § 1396s), the VFC mandates that only vaccines recommended by ACIP may be provided under the VFC. Specifically, 42 U.S.C. § 1396s(e) requires the Secretary to use “the list established (and periodically reviewed and as appropriate revised) by the Advisory Committee on Immunization Practices.” Accordingly, unless and until ACIP affirmatively recommends these Covid-19 vaccines for the applicable pediatric populations, any distribution or administration of the vaccines procured under these contracts through the VFC would constitute a violation of Section 1928 and its implementing regulations. Please confirm forthwith that the procurement contracts have been cancelled and that the funds will be reallocated to assist the vaccine injured. We hope, given your prior statements regarding these products, that you will take this approach. But if the moral and humane approach is not taken, at the very least please confirm forthwith that these procurement contracts are entirely unrelated to the VFC. Very truly yours, /s/ Aaron Siri Here is a link to the full letter: icandecide.org/wp-content/up…
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Dean Cheramie retweeted
Today was my consult with Dr. Kato @shonyan at Edogawa Hospital and I could not be more at peace with my decision to come to Japan🙏🇯🇵 He is warm, thorough, and incredibly knowledgeable. He spent real time with me (almost 2 hrs) answered every question. I felt heard. Validated. Every debilitating symptom had a checkbox ✅️ There was also another physician assisting him. Unfortunately, I didn’t get his name. Christine, his lead interpreter was extremely kind and empathetic. She spoke fluent English and was very easy to communicate with. Every answer Dr. Kato gave was met with unanimous agreement from everyone around him. To sit in a room where everything I have endured was vindicated, where my illness is real, where I am believed without having to fight for it,or my sanity, is something I will never take for granted!! Overall the consultation gave me complete confidence! Tomorrow I begin SCGF therapy and Sat is my first round of DFPA. #VaccineInjured #VaccineInjury #VaccineDamage #VaccineHarm #LongVax #CovidVaccineInjury #mRNA #mRNAInjury #SpikeProtein #MicroClots #BloodClots #PostVaccine #VaccineSideEffects #VaccineVictims #WeAreNotStatistics #React19 #MedicalFreedom #HealthFreedom #InformedConsent
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