#MECFS is not consistently recognized, diagnosed, or safely managed!
Join #Solve and #MEAction in asking State Medical Boards to meet and support questions on national medical licensing exams.
Add your name & share: tinyurl.com/StateMedicalBoardForm
#NEISvoid, #MECFS #pwME #LongCOVID #IACCs
"Coffee with a Clinician" online event on Dec 10, 2025, at 10:00 am MST, focusing on pacing for holidays and special events. Register at batemanhornecenter.org/events.
The holidays can be challenging when energy is limited.
Join us Dec 10 at 10:00 am MST for “Coffee” with a Clinician as we explore practical pacing strategies for holidays and special events 💙
🔗 Register: https://bit.ly/4npZ4Ud
#MECFS #LongCOVID #IACCs #Pacing
A person using a laptop displaying "Online Support Group". Event details: "Tuesday, Nov 18 | 1:00 pm MST. Acquainted with Grief: Growing through Ambiguous Loss". Bateman Horne Center logo at the top.
Join us Tues, Nov 18 | 1 PM MST for BHC’s Online Support Group-
Acquainted with Grief: Growing through Ambiguous Loss
We’ll reflect on what we’ve lost, how we heal, and what helps us move forward.
Register now: https://bit.ly/4npZ4Ud
#MECFS #LongCOVID #ChronicIllness #IACCs
#ApresJ20 #CovidLong #LongCovid
#EncéphalomyéliteMyalgique #EM #MECFS #Lyme #Alzheimer
#PostInfectious #PersistentVirus #ViralPersistence #IACCs #PostInfectieux #BiomedicalResearch #ClinicalTrials #FallSymposium2025 #PolyBio #UCSF #Karolinska #MountSinai #DemystifyingLongCovid
Invitation to "Coffee with a Clinician" online event on Nov 11, 2025, at 10:00am MST about "Navigating Clinical Uncertainty: Part 2".
Flyer for "Coffee with a Clinician: Navigating Clinical Uncertainty: Part 2," discussing patient-caregiver-clinician communication.
☕ Join us Wed. Nov 12 at 10 AM MST for “Coffee” with a Clinician: Navigating Clinical Uncertainty Pt 2.
Hear patients, caregivers & clinicians share ways to bridge communication in complex care.
Free | $5 optional donation.
🔗 https://bit.ly/3JCHAFq
#MECFS #LongCOVID #IACCs
Woman sitting on a couch using a laptop showing "Online Support Group." Text below: "Tuesday, Nov 11 | 1:00 pm MST. Denial, Resistance and Gaslighting: Coping with Others' Unhelpful Reactions to Our Illness." Bateman Horne Center logo at the top.
Join us Tues, Nov 11 | 1 PM MST for BHC’s Online Support Group:
Denial, Resistance & Gaslighting — Coping with Others’ Unhelpful Reactions
Let’s talk about communication, boundaries & advocacy in chronic illness.
🔗 Learn more: https://bit.ly/4npZ4Ud
#MECFS #LongCOVID #IACCs
👀 #IACCs #HAI #CovidIsNotOver #COVIDisAirborne #N95sSaveLives #CleanAirNow #LongCovid #LongCovidKids #WeNotMe #TogetherWeCan #ShareTheCare whn.global/health-depar...
Now punctuated: I’m in online research for #LongCOVID & other #IACCs that ask mental health Qs like “do you worry every day,” “do you feel something bad will happen.” Fuck yeah to both - but it’s not due to illness… but the studies don’t ask me about being #disabled #trans person in #Trump US.
I’m in online research for #LongCOVID and other #IACCs with mental health Qs like do I worry every day, if I feel something bad will happen. Fuck yeah but it’s not due to my illness and disability but the studies don’t ask me about being a #trans person in #Trump US.
There are reports of people getting knock off supplements on Amazon and Walmart.
If Amazon is your only option, pay close attention to the packaging.
#MECFS #LongCovid #IACCs
Yet another absurdity of #MECFS and other #IACCs
Ostracized so much by our own medical system we’re forced to rely on unregulated supplements for relief.
Now there’s lead in the protein powder and god knows what in the Amazon knock off supplements 🤦🏻♀️
EBV and VZV.
To fight against the immune runaway at work in these diseases, it is thus necessary to develop a means parallel to the stimulation of the immune system;
The mechanisms to combat its overactivation are what is called immune tolerance.
#ME/CFS #LongCOVID #IACCs #PAIS #Immunology
The Bateman Horne Clinical Care Guide for #MECFS #LongCovid and #IACCs is linked below.
I haven’t had the energy to read through the whole document yet, but what I read so far is solid.
Their section on PEM is the best I’ve seen.
batemanhornecenter.org/clinical-car...
Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web
MICHAEL J. PELUSO, MAUREEN R. HANSON, AND STEVEN G. DEEKS
#ME/CFS #PAIS #IACCs
multisystemic illness with the utmost complexity of mechanisms that are partly shared: cytokine storm, ACE2-mediated viral infection, endothelium disruption, and thrombo-inflammation.
Etc. etc. etc.
#LongCOVID #ME/CFS #PAIS #IACCs
ME Research UK announces sponsorship of IACFS/ME Conference Poster Competition
2025 ME Research UK Virtual Poster Competition – Hosted by IACFS/ME – October 22- 25, 2025 Virtual Research and Clinical Conference
#ME/CFS #IACCs
@meresearchuk.bsky.social
It was my absolute pleasure to raise awareness and provide some clinical strategies for managing pediatric Long COVID Pediatric Grand Rounds at USUHS this week #longcovid #iaccs
Blue graphic with the Bateman Horne Center logo at the top. Large white text reads “From Clinic to Global Community.” Below, a world map shows diverse illustrated people standing on different continents, each marked with red location pins. At the bottom, white text says, “Support our global movement for change!”
From rural clinics to global reach 🌍 Read: bit.ly/4kWmM8y
BHC’s Clinical Care Guide, which helps providers deliver informed care for ME/CFS, Long COVID & IACCs, has reached 123 countries (and counting).
We’re just getting started. Support the work.
#MECFS #LongCOVID #IACCs @openmedf.bsky.social
I hope @hankgreen.bsky.social duly considers how that, and resultant institutional #MedicalMisogyny, is inexorably linked to our relatively poor understanding of immune dysfunction (in autoimmune disease but also) in debilitating pathogen-linked diseases like #ME #LongCovid #ChronicLyme other #IACCs
yep
imho immune dysfunction whether from allergies, autoimmunity, #IACCs etc is caused by specific combinations of genetic predisposition AND exposure to "matching" pathogens e.g. only 1-8% of ppl get alpha-gal syndrome (mammalian meat allergy) after tick bite; 90% of ppl have had EBV infection
1/
exactly this!
most especially: don't push yourself beyond your body's "safe" zone—even just once, even just a little—when it can result in a significant and far too often *permanent* decline in your health baseline, cos that's a "feature" of your particular chronic illness/es 🙄
#ME #LongCovid #IACCs
Promotional image for Education Modules for ME/CFS, with the headline 'Education MODULES' in bold, followed by 'ME/CFS AT YOUR PACE'. The image highlights that the modules are developed by clinicians and people with lived experience, designed to be accessible, self-directed, and grounded in lived experience. A person is shown typing on a laptop. The text 'Support that meets you where you are' is featured at the bottom, with the Bateman Horne Center and Emerge Australia logos displayed.
Exciting news: BHC & @emergeaustralia.bsky.social are collaborating to expand access to self-paced, patient-centered education for people with #MECFS, #LongCOVID & #IACCs. These tools help individuals better understand their experience with PEM, OI, and more.
Available: loom.ly/TUT-cLw%22
Some great #ME #LongCovid #IACCs research, news, advocacy orgs: @meactnet.bsky.social @patientled.bsky.social @longcovidadvoc.com @openmedf.bsky.social @polybiorf.bsky.social @mecfsresearch.bsky.social @batemanhornecenter.bsky.social @thesicktimes.bsky.social
(7/8)
Designed to improve diagnosis and care for post-infectious conditions, this chapter-based guide offers real-world insights from expert clinicians.
Reserve your copy: bit.ly/4jScKFu
#MECFS #LongCOVID #IACCs #MedicalEducation #AccessToCare
These folks never cease to inspire hope! Always grateful!
#LongCOVID
#ME/CFS
#pwME
#IACCs
www.youtube.com/live/ActMM5q...
1/ @catsocialintel.bsky.social gave a massive shoutout to David Putrino @putrinolab.bsky.social
and his work at @coresinai.bsky.social w/
Amy Proal @polybiorf.bsky.social
Building on a @unitetofight.bsky.social
talk, Cat explains why
re-building systems for #IACCs IS the #FutureofHealth:
. @meactnet.bsky.social
Join our Partner Caregivers (all caregivers of #pwME #LongCovid #IACCs etc welcome) meeting April 6, 3 pm ET where we're discussing "How to Get Involved with ME/CFS & Long COVID Advocacy" w/ @meactnet Laurie Jones & @PlzsolveCFS Emily Taylor
www.meaction.net/event/me-par...
This article in @zeteo.com by @juliadoubleday.bsky.social on #LongCovid has been my spirit’s tonic 💜 (especially in a sea of texts that now recognize #LC but only in the mildest, cheeriest way possible, without addressing other #IACCs or the urgency of this ongoing, growing crisis)
I am not well enough to make it to this #StandUpForScience but it has my full support.
Today, that means sharing and amplifying their message.
I push institutions to do MORE to fund research for disease - especially #MyalgicEncephalomyelitis #MECFS #LongCovid & other #IACCs.
Not less!
Q: Has COVID-19 increased ME/CFS cases?
A: Before 2020, 1-3 million people in the U.S. had ME/CFS. Now, research suggests that number may be as high as 15 million due to COVID-19. We need more awareness, research, and care! 💙 #MECFS #LongCOVID #IACCs #ChronicIllness #BHC @openmedf.bsky.social
