2026-1-7 Worst POTS day ever
https://www.illmarks.com/2026-1-7-worst-pots-day-ever/
#anatomy #art #bodyHorror #bodyMapping #bodyhorror #cfs #chronicIllness #CovidIsntOver #Dysautonomia #FediArt #illustration #ink #longCovid #longcovid #mastoart #me #mecfs #medart #medicalArt #MillionsMissing #Patient #PatientLed #POTS #potsie #publicHealth #pwLC #pwme #SciArt #SciComms
#SalamonSMD on X wrote:
Calling #MedTwitter and #LongCOVID, #PEM & #MECFS circles:
I am compiling evidence against graded exercise therapy. Please share your favorite papers in replies.
#PatientAdvocacy #BelievePatients #PacingNotPushing #PatientSafety #LongCovidAwareness #pwLC #PatientLed
👀 #PatientLed #MECFS #CovidIsNotOver #COVIDisAirborne #N95sSaveLives #CleanAirNow #LongCovid #LongCovidKids #WeNotMe #TogetherWeCan #ShareTheCare
https://us02web.zoom.us/webinar/register/WN_FlN9_eVjRdmKFJ9WnlpMkw#/registration
Join us to explore the findings and latest updates from 10 studies funded by the Patient-Led Research Fund — biomedical research projects selected by a panel of patient-researchers with both scientific expertise and lived experience of Long COVID and/or ME/CFS. Support Our Work: This webinar is free to attend, but if you're able, we invite you to support our work by making a donation. Your contributions help us continue patient-led research and advocacy. Donate what you can here: https://plrc.donorsupport.co/page/plrcdonate Thank you for your support! The PLRC Team
#Clinician's Roundtable with Tania Dempsey, MD on March 14th
Dr. Dempsey will give a 45-minute lecture on #vector-borne illnesses often seen as co-infections in #MECFS and #LongCovid, followed by a 15-minute Q&A .
Register now at https://us06web.zoom.us/webinar/register/2117347281730/WN_qDphjDHhQa-OXwLpvxgEAw#/registration
#iacc #chronic #illness #infectious #MD #clinician #medX #patientled #millionsmissing #nesvoid #pwME
Dr. Dempsey's will give a 45-minute lecture on vector-borne illnesses often seen as co-infections in ME/CFS & Long Covid, followed by a 15-minute Q&A . Dr. Dempsey is the founder of the AIM Center for Personalized Medicine - Internal and Integrative Medicine. She is a world renowned expert in chronic disease, autoimmune disorders, and mast cell activation syndrome, and is sought after internationally for her knowledge of chronic immune dysregulation. Dr. Dempsey’s extensive knowledge and experience in Mast Cell Activation Syndrome, mold, and Lyme Disease, has propelled her to the forefront of the functional medical community as a recognized and trusted speaker, researcher, advocate, and physician. "Never let anyone, especially a medical professional, tell you that your symptoms are not real or they don’t fit a specific disease. You know your body better than anyone else, so listen to it and keep searching for answers if you haven’t found them yet. And remember that you only get one body, so treat it well." - Tania Dempsey, MD. Dr. Dempsey's podcast: Mast Cell Matters https://drtaniadempsey.com/podcast/ Dr. Dempsey appearances: https://drtaniadempsey.com/press-media/ Dr. Dempsey: main website https://drtaniadempsey.com
Calling all #Patients #PatientAdvocates #PatientExperts, family members, care givers, #PatientOrganisations and group leaders
PiCC United is coming in October, find out more here: https://linkedin.com/feed/update/urn:li:activity:7241813432818089986 #patients #PatientExperts #Collaboration #Involvement #PatientLed #CommunityEngagement
Exiting News!
In October, we’re launching PiCC United (Patient Involvement and Collaboration Community), a global community aimed at enhancing healthcare partnerships. Whether you identify as a patient, care partner, family member, or advocate, stay tuned for details on a community with a difference.
PiCC United will simplify how you get involved helping you to feel in control.
Follow us for updates
#PiCCUnited #PatientInvolvement #PatientEngagement #PatientLed #Community
Email from #MEAction:
"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!
We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."
Full email -
https://mailchi.mp/meaction/teachmetreatme-payoff-will-be-huge
Jaime Seltzer of #MEAction gave her first "Teach M.E., Treat M.E." talk yesterday, part of a campaign to educate health care workers about ME/CFS and Long Covid.
Lots more talks scheduled for May and June.
This whole initiative is led by people who have ME/CFS and Long Covid.
Link: https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kpwzjiiqcl2l
[New link added - the old thread on Bluesky was deleted]
#MEcfs #LongCovid #MillionsMissing #MedEd #MedMastodon #PatientLed
Just gave our very first talk as part of this year's #MillionsMissing campaign: #TeachMETreatME. Huge thanks to UNC Family Medicine for hosting these talks today as part of the #TeachMETreatME campaign! Thanks too, to Dr. Baratta and Gillian M! Tired, but gratified. #MillionsMissing
From New York Amsterdam News:
"The continuing fight for Long COVID and Myalgic Encephalomyelitis patients"
"Billy Hanlon, who has been living with ME/CFS since 2017, spoke with the Amsterdam News in a Q&A about Long COVID, ME/CFS, and ongoing advocacy efforts. He is the director of advocacy and outreach for the Minnesota ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome] Alliance…"
https://amsterdamnews.com/news/2024/01/11/the-continuing-fight-for-long-covid/
I saw three patient activists (listed as "Lived Experience Speaker") on the agenda - Vox Jo Hsu, Ashanti Daniel, and Chimére Sweeney.
I recognize those names from different events but I think several spoke at the #MEAction demonstration in DC on May 12:
https://millionsmissing.org/dc-protest/
(Quick skim, so I may have missed some names! And I think one speaker was still TBD)
Welcome to the #MillionsMissing Virtual Exhibit On May 12th, #MEAction set up 300 red-draped cots on the Mall beneath the nation’s iconic Washington Monument in demonstration of the millions of people living with myalgic encephalomyelitis - also known as chronic fatigue syndrome or ME/CFS - and Long COVID.
illmarks
Bass #Antifa #EcoHumanist
Jeweljam
KimK ... one day at a time
MediPaCe
ahimsa