A very good 17 minute documentary on POTS. If you are someone you love suffers from POTS this might be a helpful video to share with them and would be good to share with Healthcare providers.

Is this one of the many facets of PEM that is found in people with #longcovid and #mecfs?

I have long Covid. Don’t call my chronic disease a ‘journey’ www.statnews.com/2025/11/25/c... via @statnews.com

Some healthcare providers are still referring to #mecfs and #longcovid as psychological or "functional" despite considerable research to the contrary. Here, I review the latest findings and expert thinking, with potential for treatment: www.medscape.com/viewarticle/...

"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...

🎥 Recordings Available: Community Symposium on the Molecular Basis of ME/CFS 👉 Access them here: ow.ly/Aw2G50XcIIO #MECFS #pwME

Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...

Sunday morning read: www.npr.org/2025/10/18/n...

Someone knowing their limits and stopping before a crash starts is an important part of pacing yourself. Very concerning conclusions.

Just a reminder that this is coming up quickly, on 10/31. You can register to watch remotely or in person. Im very curious to see what they come up with.

This is a beautifully worded description of how people with ME have to navigate the world. I have yet to meet a person with ME who "prefers" living like this. In fact, we abhor it.

#NEISvoid inside baseball— The NIH team’s response to this (the Davenport et al comment) is awful. It’s here: www.nature.com/articles/s41... 1/

Important thread for #pwME & #LongCovid (this affects y’all too). We need to dismantle/replace this dangerous & outdated paradigm once & for all, & we need NIH research funding to do that, but the people assigned to “help” us at NIH keep showing themselves to be enemies, not friends

Of course everyone affected knows ME is the opposite—as you say, our loved ones have to beg us to do less to stay safe, when our instinct is always to do more (at our peril). 3/3

Rolling Stone article about Long Covid's effects on student education. It tracks. If you're an educator, please learn about this illness. Not part of the article, but good to know: For many, Long Covid is the development of MECFS, a condition which frequently begins after a viral illness.

The reason they're coming after this place is because they can't control the people on it and it drives them nuts.

Why Effort Preference Misses the Mark. It is not about motivation- it’s about biology. @nature.com Even minor exertion can lead to #PEM. conta.cc/4mM0B5C #MECFS #C_Scheibenbogen #Huisarts_Vink @sunsopeningband.bsky.social @marydimmock.bsky.social @davetuller1.bsky.social @openmedf.bsky.social

US Government accounts have arrived on Bluesky. Block on sight. Protect your digital space. Be aware that the DHS account in particular is known to quote dunk on regular people to encourage their followers to harass them. The detach quote function will come in very handy here…

1) Remember the intramural NIH study about effort preference in ME/CFS? Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

Getting ready to watch the livestream; it seems to be starting a few minutes late. I can't promise a full live blog but will do my best to share major updates here (while @mileswgriffis.bsky.social and I also work on our write-up).

Tuning into the HHS 'Invisible Illness: Leading the Way on Long COVID Roundtable' Featuring: RFK Jr. FDA Commissioner Makary NIH Director Bhattacharya Sen. Roger Marshall (R-KS) Sen. Todd Young (R-IN) Rep. Jack Bergman (R-MI) + 'Patients, providers, researchers..' Here goes nothing.... 😬 😬 😬

“The literature already exists. We don’t need to talk about ME/CFS and long COVID as though they are these mysterious illnesses. We also don’t need to talk about them as though they are contested as to whether they are biological or not. These are biological illnesses.”

RFK Jr is holding a panel on Long Covid the day before Covid vaccines are discussed at ACIP. I wonder if he's going to claim that Covid vaccines cause Long Covid.

Initial results webinar for DecodeME #mecfs

Whilst Andrew continues to work on the farm, his symptoms, including chronic pain and debilitating fatigue, are a significant barrier to daily activities and social interaction...he doesn’t have the strength and is unable to physically hold the livestock."

Friends with ME/CFS! The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion! Takes ~15 mins but you can save and come back if you need a break. If you could also share this, that would be a huge help!

IACC Long Covid Case Competition at UMich Ross school of business. Open to the public, in person or online. #Longcovid #mecfs #POTS

Full text of this German study has just been published Pyridostigmine improves hand grip strength in patients with #myalgicencephalomyelitis / #CFS Free fulltext: www.frontiersin.org/journals/neu... This drug, Mestinon, is being tested in the @openmedf.bsky.social LIFT trial #MEcfs #PwME

Sign up to if you're interested (and able) to participate in #mecfs, #longcovid or fibromyalgia research studies.

Excellent interview by @davetuller1.bsky.social with @cgatist.bsky.social regarding the @decodemestudy.bsky.social #mecfs

Excellent podcast discussing #mecfs and the new DecodeME study.

Through this request, “Secretary Kennedy has demonstrated that he wants the scientific literature to bend to his will”, says Oransky.

Really struck by this quote by John Green in his book: Everything Is Tuberculosis: “Biology has no moral compass. It does not punish the evil and reward the good. It doesn’t even know about evil and good.” You did not choose this nor do you deserve it. #mecfs #longcovid

Researchers identify key biomarkers for chronic fatigue syndrome news.cornell.edu/stories/2025...

This seems to track with Ron Davis's hypothesis about "something in the blood." It would be interesting to do a larger-scale study that combines the methodology of this study with serum screening using the nanoneedle. #mecfs #longcovid

Scientists find link between genes and ME/chronic fatigue syndrome

"Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness."

Just FYI, long Covid may now be the most common chronic health condition in children: jamanetwork.com/journals/jam...

Guardian: Covid cases rising in US as officials plan to restrict booster vaccines 'While the Trump administration has not released updated data on long Covid, an estimated 5.3% of all adults in US said they were currently experiencing long-term Covid symptoms..' www.theguardian.com/world/2025/a...

Last week, we hosted @virusesimmunity.bsky.social to discuss her Catalyst Award-winning study, “Probing Functional Autoantibodies in Patients with #MECFS." She shared how her work lays the groundwork for targeted treatment & advancing diagnostic tools. Watch here: t.co/43CpYSc4ms

More detail on the great steps for ME/CFS in the Senate Appropriations Bill! Advocacy brings results!