crazy that the website that I randomly decided to put together at 10AM yesterday has had over 25k unique visitors in 24 hours. please keep sharing with your networks.

The blood of #PostCovid and #MECFS patients can transmit symptoms by damaging previously healthy muscles and mitochondria. First observed in a mouse model 🐭, now a new in vitro study 🧪. Paper with a very detailed list! @sheezamughal.bsky.social et al. 🇪🇸

A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in #ME/CFS and long COVID Christopher W. Armstrong et al.

You aren't actually overreacting other people are sleepwalking.

📣 If you’re in Maryland: Submit testimony to support HB27 - online, in person, or in writing. Your story makes a difference. 📄 Step-by-step guide: mdlegislative.com/legislation/...

Consumers don’t know if their medications came from factories that used dirty water, were infested by insects or birds, or were outright banned from shipping drugs to the U.S. Our new tool provides answers that the FDA won’t 👇

"The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent." A new op-ed in @thesicktimes.org by Sevda Sarikaya thesicktimes.org/2026/01/13/s...

Germany did the math and found that Long Covid and ME/CFS cost 1.5% of the nation's GDP. mecfs-research.org/wp-content/u...

Medscape: 'Multiple Abnormal Responses to Exertion Seen in ME/CFS' 'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..' www.medscape.com/viewarticle/...

shout out to everyone else desperately trying to regulate their autonomic nervous system during The Horrors (especially folks who already have an overactive fight/flight response) #NEISvoid

We published results from a new pre/post-infection long-COVID study today. Individuals with neurological symptoms of long-COVID experienced significant increases in a biomarker for cortical health called pTau-181 when compared to pre-COVID samples. #COVID-19 www.sciencedirect.com/science/arti...

LOW VASOPRESSIN IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME #ME/CFS #ADH #Vasopressin Teaching Points orthostatic intolerance and polyuria-polydipsia typify disabling forms of ME/CFS • in a consecutive series of ME-CFS patients, majority had very low vasopressin levels, relatively

Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025. All of this work is carried out by a team living with #LongCovid 🧵 /1

Mood + treat/cure #MECFS #LongCovid obviously 🥂 ✨ (credit @sarah_thompson25 tiktok)

It is very odd to feel like everyone hates you when you want to protect yourself from sickness and that your long term sickness from that sickness reminds them of “old”sickness times even though the sickness is on going so they hate you for that too.

Good piece on rest! @exceedhergrasp1.bsky.social quoted extensively. When I was dxed with #MECFS the dr said, “you need to rest.” And the gamechanger: “audiobooks are not rest” — I still think about that statement when I need to check in with myself about whether I’m actually resting.

holding the whole #MECFS community in my heart over these holidays & feeling a kinship w/ so many strangers from a distance who are also spending their holidays trying to find quiet joy & peace however possible ❤️🎄💚

Telehealth is vital for people with #LongCOVID. Don’t let it disappear thesicktimes.org/2025/12/19/t... This article explains why telehealth (remote/virtual healthcare) is needed by patients with Long Covid,ME/CFS, & other chronic illnesses & lists some advocacy actions for Canada & the US #MEcfs

1) Dr. Jarred Younger has registered his trial of Low Dose Naltrexone, which will start next year. It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.

THREAD: The FDA has made it difficult to find where medications are made. Today we're changing that with our latest tool. With Rx Inspector, it’s possible to see your drug’s manufacturing facility and what the FDA found during its inspections. Here's how you can use it. 1/

Science Direct: "Recommended long COVID outcome measures and their implications for clinical trial design, with a focus on post-exertional malaise" By Letícia Soares, Hannah Davis, Ezra Spier, Tiffany Walker, Todd Davenport, David Putrino, Michael Peluso & ... www.sciencedirect.com/science/arti...

A new systematic review & meta-analysis of 2M+ people estimates a ~36% pooled prevalence of reported long COVID after infection. claiming you "don't know anyone" who's had long COVID is statistically implausible - unless you only know like <3-4 people www.thecardiologyadvisor.com/news/more-th...

If you are in the U.S. & living w/ a #disability do you know about STABLE savings accounts? Eligibility changes on January 1, 2026. Previously eligibility was if you became disabled before age 26. This changes to before 46, allowing a lot more people to qualify. #LongCovid www.stableaccount.com

Medical codes of diagnoses common in our community that doctors should be using for billing & documentation. Whenever a study is done on prevalence of these diseases using electronic health records, these codes matter. If we aren’t coded, we aren’t counted. #LongCovid #MECFS #POTS #EDS

Wow big Long Covid news!

Another horrendous study is launched using already-debunked protocols (CBT and GET) on subjects with #chronicfatigue who can't afford to risk exposure to this dangerous nonsense. And they're being deceived. Why does this keep getting funded? #MECFS #longCOVID #disability #pseudoscience #healthcare

New Scientist: 'Chronic fatigue syndrome seems to have a very strong genetic element' 'The largest study so far into the genetics of...myalgic encephalomyelitis, has implicated 259 genes – six times more than those identified just four months ago' www.newscientist.com/article/2508...

A new review of current published research into the use of Ivabradine in PoTS (Postural Orthostatic Tachycardia Syndrome) has been published in the Journal of Cardiovascular Pharmacology. Read more:  https://meassociation.org.uk/3g00  #POTS #MECFS #pwME #LongCovid

I’ve spent the last few days filling out paperwork w/ every little detail of all the mundane things I haven’t been able to do for the last 5 yrs, & watching people mourn the passing of someone who had the same disease as me. I also got a casual text that said “hope you’re driving again” (umm, no) …

Webinar from @dysautonomia.bsky.social Dec 17th Dr.Grubb & Dr.Gunning on their research in #pwLC & #POTS: “Multiple studies now show that platelet storage pool deficiency is present in a majority of people with POTS and new research confirms this finding in individuals with Long COVID POTS as well”

I'm giving a talk next week and you're invited! ✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨ The talk is donate-as-you're-able, and 20% will support #MEAction. You can sign up to attend here: us06web.zoom.us/meeting/regi...

Thanks to the Long COVID community, eligibility screening for LoCITT-T is now closed, 41 days after it oopened. We'll share more about what's ahead on 12/17 at 2:30 eastern / 11:30 pacific. scrippsresearch.zoom.us/webinar/regi... For those who have taken the screener but not consented yet... 1/2

The Sick Times: 'Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients' Written by Miranda DeNovo 'For more than a year, I’ve been helping take care of multiple community members with very severe Long COVID & ME..' thesicktimes.org/2025/12/09/d...

New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care. Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected. SIGN THE LETTER: actionnetwork.org/petitions/fr...

And disability justice never took root in America because the sick see themselves not as disabled but (as @katieklocksin.bsky.social has put it) as temporarily embarrassed healthy people

The German government has committed half a billion euros for research on long COVID and other post-infection syndromes go.nature.com/48qFiTA

Stanford researchers found no clear signs of autoimmunity, EBV reactivation, or microclots in 152 Long COVID patients They saw lasting immune activation in monocytes, neutrophils, and T/NK cells, even though Paxlovid caused only short-term immune shifts www.medrxiv.org/content/10.6...

#DisabilityCommunity #NESVoid Does anyone have recommendations for books on somatic therapy, somatic healing, CPTSD, etc that are #disability / #chronicillness friendly, non-gaslighty, trauma-informed etc?

“Able-bodied” may sound like a medical determination, but, as disability activist @imanibarbarin.bsky.social says, it’s really just a vague way “to signal this idea that disability can be seen.”

I use Visible and I like it, but they need to create a new system for what trials they offer to patients. There are a number of bad actors in the IACC world. Platforming one of the researchers from the PACE trial is not it. #MECFS #LongCovir

I missed this from a couple of weeks ago, but if you're an NIH-funded investigator, please read. Peer review will exist to make things look legitimate, but can, and will, be over-ruled. Funding decisions, ultimately, will be done by political appointees. grants.nih.gov/news-events/...

New review from Akiko Iwasaki outlining the history of chronic illness in the wake of epidemics www.cell.com/trends/immun...

Watching someone you know descend into pseudoscience quackery is wild. If you question or disagree w/ them they blame it on resistance & fear of the “truth.” Yet they can’t see that they themselves are so afraid of the actual truth that they constructed a little cocoon of nonsense just to cope?

NEW preprint Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID S. Gardner et al. #ME/CFS #LongCOVID #GeneticRiskFactors

“Non-disabled people do not expect anger. Loneliness, gratitude, and a quiet resilience are the emotions we are allowed to express. However, as Wong shared, in many tweets, blog posts, essays, and talks, “f— that s—!””

Today is Giving Tuesday! All Donations tripled! We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do. Donate now and be a lantern for all of us! meaction.net/donate

We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year! Support our work: patientresearchcovid19.com/donate/

www.giftsforme.org New endeavor

I’m excited to share my latest work, “The Small Life.” It explores the little things that still bring me joy as I navigate #LongCovid and #MECFS. #ChronicIllness substack.com/home/post/p-...