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Maya

@mayabee24

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LongCovid #SevereME POTS MCAS FUNCAP <1
Co-PI SIGNAL (Research & device library for ME & LC) 🍉
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Helpful Resources for Long Covid & ME that I’ve learned over the last 6+ years. Especially SevereMECFS. #FrailAndFurious #MillionsMissing #Spoonie Comment any of your favorites or additions Alt text in comments. by @mayabee24
78
6 months ago
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#SevereME is brutal, #PedroPascal gives ME humor Severe #MyalgicEncephalomyelitis is the medical scandal most people don’t know or believe exists. People with severe ME have a worse health related quality of life than those with MS, Parkinson’s, and even stage 4 cancer. The key feature of ME is a worsening or additional symptoms 12-72 hours after sensory overload or mental or physical exertion which can be as minimal as speaking. Research demonstrates clear neuro, immune, and metabolic changes in #pwME after exertion unique to ME. Despite this, a group of psychologists who promote the Biophysiosocial model of medicine (BPS) campaigned against patients claiming there is no biological illness and patients just need exercise and therapy. Their actions against people with Myalgic Encephalomyelitis are so egregious it has been named “the greatest medical scandal of the 21st century” References in b*i*o Featuring: @meactnet @thesicktimes @wecrunchme @thecanaryuk @pascalispunk + #SevereMEDay #MillionsMissing #GreatestMEdicalScandal #PedroPascalPapers Video description: alternate lyrics and news clips that describe the scandal of ME. See references for full details. by @mayabee24
62
a year ago
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#PedroPascalPapers Part 2 Some more Pedro Pascal as ME/LongCovid Research updates for #LongCovidAwarenessDay Which is your favorite? Photo arrangement & research summaries credit: Maya @mayabee24 #MECFS #LongCovid #SevereME #PEM #PostExertionalMalaise #MyalgicEncephalomyelitis #OrthostaticIntolerance #POTS #IACC #GreatestMEdicalScandal #JohnVsJonVsME #PedroPascal #MedEd #5YearsLongCovid #FundThePlan #CovidIsAirborn #WearAMask #CleanAir #LongCovidResearch #RenegadeResearch #LongCovidSOS #MillionsMissing #HalfADecadeOfNeglect #PedroPascal @pascalispunk Pedro Pascal matched to ME/LongCovid research infographic Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis J Gen Int Med, 2025 ME/CFS prevalence after COVID infection in this prospective study was found to be 4.5%, up from 0.2-1% general pre-pandemic levels. Post Exertional Malaise, the cardinal symptom of ME/CFS, was the most common and most debilitating symptom among those with Long Covid. Second most common symptoms were cognitive impairment & orthostatic intolerance. by @mayabee24
48
2 years ago
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Myalgic Encephalomyelitis is a nightmare most people can’t even begin to imagine. ME has the lowest quality of life compared to other chronic illnesses PMID: 26147503 It is a living nightmare. Sometimes completely trapped inside your own body. You can’t even see the horror of it because we imprisoned in our dark bedrooms. While there is a vast amount of distinct pathophysiology found in research, there are no currently available clinical tests so doctors can’t “see it” That does not mean pathology isn’t there. Similar to migraines-there is no “test” for it and the diagnosis is based on a clinical history (symptom presentation). The defining diagnostic criteria for ME is Post Exertional Malaise or Post Exertional Neuroimmune Exhaustion- a worsening of new onset of symptoms after minimal physical cognitive emotional or sensory exertion usually delayed by 12-48hrs. It is not simply “symptoms after exercise” PEM/PESE has distinct physiological patterns. The horrors persist but so do we Robin Williams Jimanji MECFS LongCovid Halloween Video description: Robin Williams speaks earnestly about experiencing things you’ve only imagined in your nightmares by @mayabee24
10
4 days ago
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How I organize my medication refill bottles. Hopefully this is helpful to someone! Stickers: Different colors for am/pm (can add more) Helps reduce cognitive strain and prevent medication errors when refilling pill boxes. Works for both you and caregivers. You can see in picture I have some with half stickers (half pill) or multiple at once (if you take two pills at night=two blue stickers) Flip tops Ask pharmacy for flip tops instead of child safety tops Alt text: a box full of pill bottles with red and blue stickers on caps by @mayabee24
4
15 days ago
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My SIGNAL update from @renegaderesearch webinar on Truvaga (Vagus Nerve Stimulator) Pilot study that helped pave the way for SIGNAL lending library & data collection. Link to webinar https://youtu.be/_ku1beUOdZc SIGNAL is a decentralized discovery platform for emerging therapeutic devices in ME/CFS and Long COVID This project is built around a device lending library. Patients diagnosed with ME/CFS or Long COVID borrow promising therapeutic devices, shipped directly to their homes at no cost to them, for a 1-3 month lending period. While borrowing, participants contribute standardized longitudinal data through the Brain Inflammation Collaborative/Solve ME unhide® Solve Together platform. This allows each lending cycle to be a real-world research opportunity. https://www.renegade-research.org/signal Video Description: picture of Maya a woman with long blonde hair in a green turtleneck in front of a field of California coastal wildflowers (yellow flowers) (This picture is pre ME) by @mayabee24
24
23 days ago
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In Gaza, the basic necessities of life are no longer a given 💔— they have become a luxury that is extremely difficult to afford. Food, healthcare, education, water, and electricity have become incredibly expensive amid extremely difficult circumstances. Even electricity can cost around $20 per kilowatt-hour, while the prices of food, medicine, and other essential needs are far beyond what many families can afford.😔 As winter approaches, the suffering and need are becoming even greater. Families urgently need blankets, warm clothing, heating supplies, and safe shelter to protect themselves from the cold.😮‍💨 Any donation, no matter how small, can mean a meal, medicine, a warm blanket for a family, or an opportunity for a child to continue their education. ❤️🍉 The donation link is attached in bio. Your contribution can make a real difference.🇵🇸💔💔🇵🇸🇵🇸🍉 #freedom #gazaunderattack #fundraiser #palestine🇵🇸 taken in Gaza City مدينة غزة by @mayabee24
8
a month ago
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Add additional housing challenges for people with (particularly severe) ME in the comments. I’ve been working on a housing project and have an opportunity to present challenges to one of my alumni networks. These are challenges I’ve come across personally. Trying to list them concisely and informatively is a challenge. And yes I will be providing background on what ME is and some general statistics. I would love to get a community survey going at some point to have actual data about housing and care insecurity within ME. Hmmm. @renegaderesearch @patientled Alt text: text on blue background “Housing & care challenges in ME”, graphics of housing, hospitals and care. Full text in comments by @mayabee24
49
a month ago
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Hello my friends, I'm back after a long absence. I hope you are all well. I missed you all so much.🤍🤍👋 #gazaunderattack #palestine🇵🇸 taken in Gaza City مدينة غزة by @mayabee24
9
2 months ago
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🚨 Big news: @solve_cfs has awarded @renegaderesearch a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵 SIGNAL tackles 3 things our community needs: 1️⃣ Real-world evidence - determine which devices actually help 2️⃣ Access - "try before you buy" 3️⃣ Speed - findings shared with patients fast, not buried in papers years later How it works: 1️⃣ Patients diagnosed with ME/CFS or Long COVID borrow devices, shipped free, for 3 months. 2️⃣ While borrowing, they contribute data through the @braininflammationcollab / @solve_cfs unhide® Solve Together platform. Every loan = a real-world research opportunity. First up in the lending library: 🔹 Truvaga (cervical vagus nerve stimulation) 🔹 Vielight Neuro Gamma (photobiomodulation helmet) More devices will be added as the platform scales. Devices that show strong signals of benefit may move forward to neuroimaging studies with Jarred Younger, PhD at the University of Alabama. SIGNAL is led by Tess Falor, PhD as Project Director; Todd Davenport, DPT, PhD, MPH & Maya Lindemann, RN, BSN as Co-PIs; Jarred Younger, PhD as an Advisor; John Haughton, MD, MS as Medical Advisor and Rivka Solomon as Advisor. SIGNAL builds on: 📦 A MA device lending library already-running (30+ loans, led by advisor Rivka Solomon) 🧪 A 20-participant Truvaga observational cohort already underway (run by Tess and Rivka) Hear more about the current observational Truvaga project and plans for SIGNAL during our Research Roundtable on August 21st. Register here: https://us06web.zoom.us/webinar/register/3317842123237/WN_sm8onpafSGaZUFG0kY9GQA Patients interested in participating in the SIGNAL study and device lending library can sign up and follow along as SIGNAL launches here: renegade-research.org/signal Thanks to @solve_cfs for supporting this project! The Solve ME/CFS Initiative (Solve M.E.) is a nonprofit org dedicated to advancing research & accelerating progress for people living with ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs). SolveME.org by @mayabee24
11
3 months ago
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#MyalgicEncephalomyelitis has the *WORST* health related quality of life by a significant margin compared to other illnesses (including MS, kidney disease, stroke, Parkinson’s, stage 4 cancer), yet receives fractions of the amount of funding while patients are routinely gaslit, psychologized, committed for a biological illness & denied benefits. The treatment of ME continues to be the #GreatestMEdicalScandal of the 21st Century. These facts are not meant to be an illness competition, but to highlight the unique & awful plight people with ME experience. We are #FrailAndFurious @meactnet #MEAwarenessMonth Check out #PedroPascalPapers for some great research information on ME & Long COVID Video Description: Pedro Pascal in bathrobe a little disheveled “listen I’m trying to care but it’s hard”. Then sitting at a table rubbing hands together distracted “we’re fvcked” by @mayabee24
7
4 months ago
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Inconceivable! #PostExertionalMalaise (PEM) is pathognomonic & exclusively diagnostic to ME/CFS (Myalgic Encephalomyelitis). PEM is the worsening or onset of symptoms after minimal physical, cognitive, emotional, or sensory exertion that is often delayed 12-72 hrs and presents with distinct neuro, immune and metabolic markers. The gold standard to confirm PEM in research is a 2 day CPET study with pathological markers revealed on day 2. Research shows pwME during PEM cannot reproduce aerobic thresholds, have distinct mitochondrial & immune cell dysfunction, changes in gene expression, oxidative damage, missing metabolites in urine, neurological changes, cardiovascular changes, muscular necrosis, and so much more. PMID: 28216087, 36984572, 38965566, 33327624, 38232699, 36835097, 38177128, 33671082, 41341517 PEM can be so severe it can leave ppl in paralysis, unable to speak & chew and in extreme cases can be fatal. PEM is NOT: *Fatigue after exertion *Post Exertional Symptom Exacerbation-general symptom flare after exertion without specific neuro, immune, & metabolic pathology that occurs in PEM *Exercise Intolerance-term used for immediate Dysautonomia response to exercise. Critical to understand the difference bc exercise intolerance responds to graded exercise that will harm those with PEM. *Burn Out/Overwhelm-terms in neurodiversity to describe reduced capacity after periods of overstimulation and/or masking. “But ppl with hEDS, POTS, fibromyalgia, TBI experience it too” PEM is not a part of the diagnostic criteria of these conditions. These conditions are highly *comorbid* with ME. If you have one of these conditions, you have a higher chance of *also* developing ME and, therefore, experiencing PEM. Similar to how if you have hEDS you likely *also* have/will develop MCAS, but they are separate conditions! Common triggers for ME include: Viruses (~50% of pw LongCovid develop ME), bacteria, mold, toxic exposures, significant traumas: surgery, pregnancy, TBI #MillionsMissing #FrailAndFurious #MECFS Learn more @bateman_horne_center YT series Reel: Maya Description: Maya with Quella Video description: in comments by @mayabee24
50
5 months ago
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