A recent study from Open Forum Infectious Diseases journal sheds light on the realities of Long COVID. Key Insights: Only 5% report full recovery 59% have not experienced a single symptom-free day 59% reporting negative effects to mental health 61% say their work has been adversely impacted.

For all my #LongCovid and #MECFS crew out there: Low-dose Abilify has recently improved my capacity 10-15%. Do with that what you will.

I am having a day where a few normal life things have made me feel very small. I used to run, yoga, swim... This is one of the hardest parts of Long Covid/MECFS is losing movement. I can process the emotions through talking, but sometimes I just to want to MOVE through them!

Celebrating 5 years of no progress from the NIH on #LongCovid. "The initiative looks forward to continuing the next phases of observational studies" recovercovid.org/news/5-years...

Scroll down to search for "Long Covid" in NIH Director Bhattacharya's Senate testimony today: www.c-span.org/program/sena...

This is a really weird way for the NIH to say that their "mind-body" trials for Long Covid failed. Almost as if they are intentionally trying to cover it up. :-/

I used to think that if I was unwell doctors would help me. Now I know how common medical gaslighting is. Multiple levels of marginalisation makes it even harder.

Leanne: They would take on different roles - when she could't cope, Pete could. Then they would swap. A step at a time. A day at a time. Some days let herself collapse.

Senator Jordon Steele-John: In preparing for today, revisited the timeline for the development of new clinical guidelines. What struck him, that a draft is still two years away. Also recognises how much effort it took to get this process underway.

Professor Michael Kidd: Acknowledges that 25% of people with ME/CFS are bedbound or housebound and there is a high economic burden to the disease, though says the true cost is lives constrained, opportunities lost and voices unheard.

It’s so heavy to hold the excruciatingly slow pace of progress on Long Covid and the devastating impact this neglect has on my life and the lives of millions of others.

Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said: "What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."

Myalgic Encephalomyelitis (ME), an illness you likely know nothing about, is one of the many things you risk with Covid. 1 in 22 infections develop ME. Is this what you want an oncologist saying about you? 👇 #MECFS #LongCovid (PS there’s no FDA approved treatment yet)

“Millions of Americans are impacted by long Covid, and they deserve a federal government that will have their back,” Virginia Sen. Tim Kaine told Rolling Stone. “The Trump administration is not only failing to achieve those goals, but actively taking us in the wrong direction.”

Has there ever been any research into what percentage of people with ME believe in brain retraining or the biosocial model? I feel like every day I see content from people who claim to have ME and say they have read a a book are excited to try it.

6) We plan to delve deeper into the implicated genes and pathways in a second blog post, but zooming out, it is already clear that the genetic data of ME/CFS patients mostly point to the brain. If ME/CFS were a war, it seems that the brain would be its main battlefield.

1) Watched the EU workshop on Long Covid yesterday. Prof. Evelina Tacconelli gave a useful overview of clinical trials. A striking figure was that 80% of randomised trials thus far were for non-pharmacological interventions, not for testing medications.

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls. Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

Yesterday, history happened at the UN: For the first time hundreds of orgs signed a global pledge declaring that healthy indoor air is a human right. Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!

What are the odds we get real Long Covid treatments that get us anywhere close to normal in the next 30 years?

Crazy that the NIH's #LongCovid RECOVER program is maybe the worst that a group of scientists have ever done at anything ever.

When Public Health officials and infectious disease experts complain that the public has taken an anti-Science position because of low vaccine uptake, they fail to acknowledge their role in fueling the anti-Science movement by telling people to wash their hands for COVID but not saying “airborne”.

Roos from ARPA-H said the agency will soon take action on Long COVID. "In short order, after this forum, we can come up with a plan, work that through the secretary’s office, get that out..." in a timeframe of weeks, not months or years, he said.

Science is broken & peer review is doing a shit job at quality control. You can't have one study saying one thing and anther saying the opposite. And yet this is FAR too common. Inflated by sensationalistic (scientifically illiterate) journalism. #Paxlovid #LongCOVID #MedSky

Noida International University shows AI can flag heart risks, read scans better, and monitor patients after COVID. The review finds AI can sharpen diagnosis, personalize treatment, and guide public health to cut long COVID related heart problems. link.springer.com/article/10.1...

The RECOVER-TLC second annual workshop videos are now online. I only joined on day 2 and left discouraged. No adaptive trials, no combinations, no antivirals or mAbs. The agent choices feel so far from what’s needed for a functional cure. youtube.com/playlist?lis...

Data collected in 2012-2020, just published now, showing…people with ME/CFS often have dysautonomia. I know everybody is rallying around the federal government’s health initiatives since they’re under so much attack, but maybe this kind of ineptitude is why they were so vulnerable in the first place

Really struggling to find any sense of excitement from any of the presenters at #LongCovid RECOVER today. Are any of them actually excited about the drugs they are trialing? They seem to have this air of "I guess we'll try this".

5) Lastly, the researchers are exploring three treatment: - immune adsorption: taking out the antibodies - Sonlicromanol: a drug that boost mitochondrial activity - An inhibitor of the enzyme IDO-2, which seems activated in LC

Through 4 episodes of THE PITT today… entranced by this fantasy of a world in which doctors have ethics and care deeply about their patients’ needs

Thinking about how #pwME educate the “experts" sometimes to the detriment of their own health. Is it worth it? Do the experts learn?

Five years in, and these are the latest recommendations from my "Long Covid specialist" at OHSU: box breathing; guided imagery; progressive muscle relaxation (tensing and relaxing one muscle group at a time from feet to face) Tell me this isn't just brain retraining phrased differently?

What questions about Long Covid did we have in 2020, that we have answered in 2025? Treatments? Clearly not. Causes? Lots of ideas, but no clear answers. Prevalence? Surprisingly, no. Why some get it and others don't? Nope. What do we know today that we didn't know before?

Unpopular opinion: Every time we have a Long Covid or ME/CFS research conference, I feel more depressed than I did before. The gap between where we are and where we need to be feels so enormous. For me, these conferences highlight how little we really know, and how little funding we have.

From the American Heart Association on #LongCovid: "exercise training . . .may be an effective strategy to facilitate improvement in symptoms" With absolutely no guidelines to avoid inducing Post External Malaise. Just claim that it can be done. WHAT A JOKE www.ahajournals.org/doi/10.1161/...

Two weeks ago, the 2025 PolyBio Spring Symposium was released on YouTube. Shoutout to the researchers & the PolyBio team! Here’s a summary thread focused on what we learned about Long Covid & ME/CFS. 🧵👇 #LongCovid #MECFS

3/ And then those "more tailored and effective treatments" never materialize. Not really. Ask anyone who has had Long COVID since March 2020. Ask them if they are still going back to their maskless (aka clueless) family doctors, for help with Long COVID symptoms.

Looks like results from several trials, including AER002 will be presented at PolyBio's #LongCovid Symposium on May 16th: polybio.org/spring-2025-...

For MN LC patients: See below regarding details on a clinical trial for Long COVID at the Univ. of Minnesota that has just begun patient enrollment & are looking for more participants. Further details if interested in applying to or participating ⬇️ www.reversinglongcovid.org

I find it very frustrating that our #LongCovid and #MECFS research organizations aren't articulating a strategy to get from where we are currently to where we want to go. I think clearly stating "We want to do this study and if it succeeds, here is what comes next" would raise a lot of funding.

It has been 7 months since the #LongCovid NIH RECOVER meeting back in September . . .has any progress been made AT ALL?

Toxicologist here! This will improve the health of zero Americans. Current synthetic food dyes are not causing health problems, and are often times used because they are actually safer than natural food dyes. Reminder that guns are the #1 cause of death of children but we are going to ban food dyes.

The reality for Long COVID patients: begging for medications that cost tens of thousands, only to end up more medically harmed. Sadly, this will remain our reality until the root causes are found and properly treated. More research is urgent—we’re slowly dy**g!

I deeply disagree with the idea that if we just present the right argument, then people will develop empathy and treat us well. They haven’t so far. Any argument that gets us funding is a good argument to make. Eugenecists will find excuses for eugenics no matter what we say or do

If we can’t eliminate Hepatitis B, Herpes, Epstein Barr, or HIV persistence with extend antivirals and monoclonal antibodies . . . Why do we think we can eliminate Covid persistence with the same technology? #LongCovid

Does anyone else feel like it has been months since the last meaningful announcement on Long Covid treatment or pathology? Had progress just completely stalled out?

Real talk: what are our #LongCovid orgs doing to fight against the cancellation of NIH Recover grants? Besides telling us to call our reps. When can we expect the first lawsuits protesting our research to be funded and files?

A Long Covid Researcher: “When I first got sick, I thought, ‘OK, I’ll just need to hang on for three to five years, and then we should have some symptom management,’ but I feel like we’re still at that point where we’re three to five years away.”

Thank you for putting these videos together, @neurologistmom.bsky.social ! I found @immunofever.bsky.social’s to be very soothing. Can’t wait to watch the rest tomorrow.

Can anyone speak to when @remissionbiome.bsky.social plans to release their protocol publically? #LongCovid #MECFS