Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad. If you have suggestions, please fill in the form tally.so/r/81KxGO

We’re excited to welcome Dr. Jessica Maya as our new VP of Scientific Programs! Jessica has experience in research strategy & collaboration, & will help accelerate progress for people living with #MECFS and #Long Covid. Join us in welcoming her! ow.ly/AIMF50YmaoB

Highly recommend!

Nobody plays the victim quite like shrinks on here complaining about patients with chronic illnesses playing the victim.

Update on Savannah PLEASE continue to donate and share: we now have to cover the cost of carers 24/7 as well as legal fees. #severeME #SaveSavannah gofundme.com/f/severemergen…

RECOVER researcher explains the process and collaboration involved in the stellate ganglion block study for #LongCovid COVID. It’s a well-funded RCT, which we need. The study design is now available and open to public comment until March 3. youtu.be/_W3VoXX-V5U

Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? healthrising.org/blog/2026/02/2…

One of the problems with having long covid is doctors are mostly clueless, and patients are left to fend for ourselves. My feed is full of people self medicating with antivirals, peptides, immune modulators, etc, mostly because they don't have a choice. It's a really tragic and

Weekly Inspiration: Sick Lessons podcast interview with me. I think you'll see how much FUN Sheryl A Chronic Voice and I had chatting, after years of interacting with each other online! We discuss life with chronic illness, lessons learned, coping, tips, & more: sicklessons.com/sue-jackson-fa…

Honored to have been invited to contribute to the NIH-RECOVER 2.0. Attending the conference virtually and looking forward to the interesting data that will come out on post-COVID #MECFS and #POTS. There is no improved #BrainHealth without solving #LongCOVID. 🧠🫀

First results from RECOVER-AUTONOMIC clinical trials to be shared at upcoming conference Results from..POTS (Ivabradine) clinical trial will be presented at Late-Breaking Clinical Trials Session of American College of Cardiology Annual Conference on 3/28 recovercovid.org/news/first-res…

Tired of tossing, turning & waking exhausted? ME/CFS & long-COVID sleep dysfunction is caused by endocrine dysfunction & can be corrected so sleep is natural, normal & refreshing. This helps everything! Here's why & how (perfect for sharing with doctors): livewithcfs.blogspot.com/2023/03/correc…

Very honored to have been invited to give a talk on #POTS today at Harvard Medical School to my fellow neurologists and other specialists at their multidisciplinary POTS clinic. Thank you for inviting me! 🙏 Jacobs School at University at Buffalo American Academy of Neurology S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic

Diagnosing and Treating Thyroid Dysfunction in ME/CFS, Long-COVID, Lyme & tick infections: Thyroid dysfunction is very common in these diseases since they mess with our endocrine system. Testing & treating is tricky, but I feel so much better now! Details: livewithcfs.blogspot.com/2023/10/diagno…

Update on our fight to secure funding for the ME/CFS Research Roadmap! #MEAction, @NJFatigue, and Solve ME/CFS Initiative have sent a joint letter to the Senate Appropriations Subcommittees asking for dedicated funding. Plus more! Full update: meaction.net/post/meaction-… #pwME #MECFS #NIH

Exercise makes people with ME/CFS & long-COVID worse (PEM), but sometimes we NEED physical therapy for injury, surgery, or pain. I wrote Guidelines for PT for ME/CFS Patients to share w/physical therapists so they understand how to help within your limits. livewithcfs.blogspot.com/2016/05/physic…

Great example why some of us do not publish in these so-called prestigious journals: not because our papers are bad, but because we don't have extra $7,350 to gift to Nature. 🙄😉

Orthostatic Intolerance (#OI) in #MECFS and #longCOVID (and #fibro, #Lyme, #EDS) - This video provides an overview of OI (also known as #dysautonomia and #POTS), tips on how to diagnose, and LOTS of options for treatment. Treating OI changed our lives! youtube.com/watch?v=XYvHsb…

From the OMF-supported MERC with Bateman Horne Center: During a crash, #pwME may struggle to think or communicate clearly. Cards help patients point to needs like water, pain, light sensitivity, or emergencies. Find these cards in our Crash Survival Guide: bit.ly/44MgSS9

Very sad to read of this 23-year-old with severe ME, ill since age 4. Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️ An example of the problem biopsychosocial models for ME/CFS cause. virology.ws/2026/03/13/tri… #MEcfs #PwME