If you’re interested in understanding how ME/CFS relates to Long Covid, this quick review of the literature is worth a read—thanks Tom for bringing it over in a format that doesn’t require a Twitter login.

Tom Kindlon@tomkindlon.bsky.social · 5d ago

Todd Davenports PhD’s thread on ME/CFS vs Long Covid threadreaderapp.com/thread/20916... #MEcfs #LongCovid #PwME @sunsopeningband.bsky.social

From @meresearchuk.bsky.social Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses. When people from all walks of life describe similar physical experiences, it offers a powerful insights into ME/CFS. tinyurl.com/PEMimpactME

Poignant words from Anil van der Zee "Not an Advocate. Not Your Silver Lining Porn. Just Desperation" anilvanderzee.com/not-an-advoc... It ends: "I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward." #MEcfs #PwME

Great article from The Sick Times on the efforts to include ME/CFS & Long COVID in the 2027 Congressional appropriations.

The Sick Times@thesicktimes.org · 2w ago

Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks. Read more from @betsyladyzhets.bsky.social: thesicktimes.org/2026/08/18/c...

Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.

Not to be some wild-eyed innocent, but I think it should be slightly bigger news that The Lancet have crunched the numbers and found that Musk's USAID cuts will kill 14 million people. And that's just by 2030. That's 9,600 people a day, every day, until the next world cup rolls around.

Jørgen Heszlein@heszlein.bsky.social · 3w ago

New estimate of Elon Musk’s death toll just dropped www.thelancet.com/journals/lan...

There are many things known by the #MECFS and #LongCovid communities that barely show up in the medical literature. The effectiveness of IV fluids is one. It affects patient care and research. I was barely able to convince my NP to try them with a case study and case series in ME.

Putrino Lab@putrinolab.bsky.social · 3w ago

Them: Did you know that people in #longCOVID trials have extremely high placebo rates? Really makes you think…. Me: Oh yeah? What placebo did they use? Them: Nothing crazy, just IV saline Me: 😐😠😡🤬 I wish people understood pathophysiology.

“If it were really that bad you would have more support”. People believe that when you’re disabled, help magically appears. That when you get worse, you get more help and/or funding. The reality is far different. There’s little to no help. We live in legislated poverty. Survival is hard.

This is still expensive, but those with #MECFS and #LongCovid know this is relatively cheap by comparison. Most of the specialty clinics don’t take insurance. This is the reality we live with: you can only access doctors with knowledge of ME and LC if you’re wealthy.

Vindara Health@vindarahealth.bsky.social · 3w ago

For $400/month, patients get monthly visits with a clinician specially trained in complex illness, unlimited direct messaging, access to the latest tests and treatments, prescription management, and a team working on their care between visits.

A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME

Emily Johnson@emilyrj.bsky.social · 3w ago

It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation) It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful My neurosurgery follow-up is soon, please donate and share: www.gofundme.com/f/help-emily...

Today is #SevereMEDay I dropped from moderate to #SevereME 3 years ago. It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below. 1/

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

#MECFS patients have a very low quality of life: lower than people with chronic renal failure, lower than heart failure, lower than any disease QOL to which it's been compared. So what is 'severe' ME? While there are many definitions, here is one from Montoya et al. (2021). 🧵 #SevereMEDay 🧪

Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.)

Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME.

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

The current state of Long Covid care:

Lilith@nicepersonality.social · last mo.

I got a referral to a Long COVID clinic six months ago, and the earliest intake appointment available was next month. I got a voicemail on Friday informing me that my appointment was cancelled because the clinic no longer does long COVID treatment. More bummed out about this than I’d’ve guessed tbh

The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share!

#MEAction Network@meactnet.bsky.social · last mo.

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

The next step in the @meactnet.bsky.social/Mayo Clinic collaboration to improve care for those living with ME/CFS addresses our emergency room experiences. If you live with ME/CFS and have visited the emergency room for your symptoms in the past ten years, please fill out the survey below.

#MEAction Network@meactnet.bsky.social · last mo.

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

It is Medicaid Monday! We are sharing a step-by-step guide to submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements. Deadline July 31! We have a template document with all the information you need! Head to ow.ly/hoVX50ZkQhc and we walk you through it.

☀️ As The Sick Times approaches our 3-year anniversary, we’re shifting from a startup to a more sustainable newsroom, in it for the long haul. And we’re marking that shift with a summer sustainability fundraiser. 🌱 2 weeks, 200 new Supporters? Help us grow? the-sick-times.fundjournalism.org/donate/

Please take a moment to read through and share information about the changes to Medicaid and what that means for the disability community! #NEISvoid #MECFS

#MEAction Network@meactnet.bsky.social · 2mo ago

It is Monday and that means it is time for #MedicaidMondays! Today we are sharing facts about Medicaid, upcoming changes, and how to take action. See our #FrailAndFurious campaign page here: www.meaction.net/frail-and-fu... #Disability #PwME #MECFS #LongCovid

ME/CFS community! Please, if you are able, come to the community meeting held by #MEAction on tomorrow - Sunday, June 14 at 3 PM ET. We are facing a changed advocacy environment, and to make any progress, we have to forge new paths and move forward together. Come tomorrow and see where we stand.

#MEAction Network@meactnet.bsky.social · 3mo ago

REMINDER! Join us for a community meeting TOMORROW - June 14th at 3 pm ET to hear about the next steps #MEAction is taking in US advocacy, and what steps you can take to be part of these efforts. https://ow.ly/p1jM50ZablP #PwME #MillionsMissing #FrailAndFurious #MyalgicEncephalomyelitis #MECFS

From our friends at @solveme.bsky.social! Take action today by submitting a comment and contacting Congress. Thanks to Solve M.E. for organizing this response on this critical issue.

Solve M.E.@solveme.bsky.social · 3mo ago

1/ A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change. The public comment window closes July 13. Here's what you can do 🧵

ok the more I stare at the image of zero studies, the angrier I am. Wired, are you for real? Did you not check for a single study in a reputable journal, first? You're advertising snake oil to desperate people on what? a whim? I assumed a study had come out, at least, even if it was very poor.

I'm working on a story for @thesicktimes.org about RECOVER clinical trial results that have been shared so far (from the VITAL, NEURO, and AUTONOMIC studies), and am looking for people in the #LongCOVID and IACC communities to share what they think of the findings. DM or email me!

Exciting update! The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Monday—calls and shares this weekend will continue to help! And 13 Senators have already signed on! Ask yours to join: tinyurl.com/LongCOVIDCall

Long COVID Campaign | www.longcovidcampaign.org@lccampaign.bsky.social · 4mo ago

📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @lccampaign.bsky.social details incoming, senators now signed: 1/x

Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding: Call tool: win.newmode.net/longcovidcam... Email tool: win.newmode.net/longcovidcam...

Long COVID Campaign | www.longcovidcampaign.org@lccampaign.bsky.social · 5mo ago

📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

#MECFS Important piece from @sunsopeningband.bsky.social detailing what’s known about post-exertional malaise and what science must take into account in order to advance research on this critical phenomenon.

In Pursuit of Understanding the Crash

What Post-Exertional Physiology Tells Us About ME/CFS

likeannopeningbandforthesun.substack.com

I'm extremely belated at boosting this but *waves hands* these workshops are happening this week It's a creativity + advocacy workshop: a way to creatively frame your own experiences to help push for key systemic goals in preparation for #MillionsMissing

#MEAction Network@meactnet.bsky.social · 5mo ago

Join MEAction's Shalida Dobbins and our amazing narrative working group volunteers for one of the two storytelling workshops to prepare for #MillionsMissing! April 14 at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi... April 16th at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi...

Storytelling is a key part of #MillionsMissing! Find all you need in our toolkit: https://ow.ly/IUOk50YGIh9 It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research. #FrailAndFurious #MECFS

Email Congress for ME/CFS funding! Prescripted—just takes 1 min! Can personalize it if you like, but it’s not required. There’s an option to follow up w/phone calls. My ME is so severe that I can’t speak, but calls make even more impact, so I’m v grateful to anyone willing to lend me their voice 🤍

Tell Congress to Fund ME/CFS Research in FY27

9 million Americans live with ME/CFS — a serious, disabling disease with no FDA-approved treatments. I just contacted my representatives to urge them to increase CDC funding, keep ME/CFS as an eligibl...

solvecfs.quorum.us

#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

Community Letter Sign-on Form

Thank you for adding your voice to this effort. By signing on, you are joining patients, caregivers, clinicians, and allies across the country in asking State Medical Boards and State Health Leadershi...

tinyurl.com