Maya
@MayaLongCovid
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RWJF ClinicalScholars Alum, School Nurse, scientific diver/ocean lover stranded by #longcovid 3/2020 & #ME, #POTS, #MCAS #hEDS #Chiari. #healthequity 🍉
Joined June 2020
So honored to represent the patient community. Here are some parts of the interview @wearlumia
Meet Maya: After COVID in 2020, @MayaLongCovid went from diver & school nurse to bedbound with ME/CFS, POTS & MCAS. Now, she serves on Lumia’s PAC, bringing the chronic illness community’s voice forward. Read her story: https://t.co/j9WYTYQ5tb
#longcovid #pots #wearlumia #pwME
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So excited for the world’s first smart earring! Check out Lumia 2.0
Meet Lumia 2 Smart Earrings ⭐ Redefining wearables with next-gen health sensing - in a form you actually want to wear. Blood flow, sleep, cycle tracking + Forecast Score all in one modular earring back to be paired with hoops, studs, cuffs and even your own jewelry. 👂#Lumia2
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Meet Lumia 2 Smart Earrings ⭐ Redefining wearables with next-gen health sensing - in a form you actually want to wear. Blood flow, sleep, cycle tracking + Forecast Score all in one modular earring back to be paired with hoops, studs, cuffs and even your own jewelry. 👂#Lumia2
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One of the most powerful things Alice taught me was that friendships and relationships that exist asynchronously and predominately virtually are no less real or valid than those who are well enough and able to meet in person. I miss her so much already. 💔
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Severe #MECFS means you often need carers just to survive. But if your caregiver is your abuser, you’re trapped. Over exertion and stress can trigger a deterioration in your health lasting weeks or even months. I can’t imagine much worse. I’ve just donated to help Mari escape.
Would appreciate support and shares for Mari! Mari is someone I’ve known for >2 years who has severe ME. She is trapped within caregiver abuse. She has inadequate care which harms her, she is struggling to access food, & she desperately needs to escape. https://t.co/9haKo6S7Fr
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✨🧵Endless thread: #Savewot I stand with The Wheel of Time. Copy and Quote this with the same text to create an infinite support thread✨🧵 #TheWheelofTime @WotTVSeries
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Here’s the recording of our Volunteer Info Session from today: https://t.co/2Z2SDCODxT With @TessFalor, @IsabelRamirezRD, @NovaSupport, @KatBoniface, @MayaLongCovid giving an overview of our org and volunteer opportunities, what it’s like to volunteer, and current and future
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We held a Volunteer Info Session today for people interested in volunteering for Renegade Research! Resources below include the volunteer session recording plus our past recordings and research presentations, our volunteer application, our newsletter signup, a slideshow summary
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n this clip, Dr. Jennifer Curtin, RTHM’s Co-Founder and Chief Medical Officer, shares how the new RTHM platform empowers people living with infection associated chronic conditions to take control of their health journey. It brings all your medical records into one secure place,
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“What is happening here is that who is deciding who can be your doctors in the NHS is pro israel lobby groups” Dr @EllenKriesels
@gmcuk & @the_mpts need to be investigated & challenged, as they have both proven to be compromised bodies that are far from ‘independent’.
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Here is the share of Long Covid papers mentioning ME. The share of papers in which ME is represented in the cohort of people with Long Covid? Often hard to say because most investigators are not carefully subtyping research samples. But...it sure seems like it could be a lot.
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Excellent thread here on boosting hidden voices on this app. Thank you, @LongCovidAdvoc, for these helpful tips.
Thread: 🚨 Long Covid and ME voices are being quietly hidden on X. Let’s talk about what’s happening - and what we can do together to push back. 🧵
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Hello, friends. We have good news and bad news. The bad news is we mysteriously lost access to our former @X account @LongCOVIDPhysio. Despite the past few months of hard work to regain access, it has become clear the best way forward is establish this new account--the good news!
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Thread: 🚨 Long Covid and ME voices are being quietly hidden on X. Let’s talk about what’s happening - and what we can do together to push back. 🧵
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We would love to get students involved in our research projects. Who are the researchers or university programs likely to have students (including undergrads) who are interested in ME/CFS and Long COVID?
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This moment says everything about why Zohran Mamdani won. A journalist in a wheelchair asked about accessibility and Mamdani didn’t talk down to him, didn’t deflect, didn’t politicize it. He listened. He’s the kind of leader who respects everyone, every faith, every class,
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🟢 In June, ADL chief Jonathan Greenblatt attacked Mamdani for refusing to meet with the “right Jews,” saying, “He doesn’t get to pick and choose which Jewish people he talks to. He needs to come to us.” Today he announced that the ADL is “launching a comprehensive citywide
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🌍 People worldwide used their limited energy to finish “ME/CFS is…” Their voices show the challenges, losses & urgent need for change. Thanks to matching donors, every gift to OMF is tripled up to $500K! 👉 Donate: https://t.co/PFwSbOAFXx.
#mecfs #pwME #mecfsresearch
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🌍 Free self-paced learning! #EmergeAustralia & #BatemanHorneCenter have launched modules for #MECFS, #longCOVID & energy-limiting conditions. 🌿 Practical tools for #pacing, #PEM, orthostatic intolerance and more. Start here: https://t.co/O2ZTQSyxdM
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