We know that there are a lot of protests happening. Stay safe everyone! We have a protest guide available! www.meaction.net/_files/ugd/b... It includes planning an accessible protest & attending an in person protest when you have ME or similar. #pwME #Protest #MECFS #ChronicIllness

1) 🇳🇴 Ola Didrik Saugstad and his colleagues report about the first specialised care unit for severely and very severely affected ME/CFS patients. It opened in 2021 in Norway. The authors report the results from the first 3 years.

Our Partner Caregiver Support call is coming up Sunday- Oct. 5 at 3 pm ET. All caregivers of #pwME #pwLC are welcome to attend. This month focuses on somatic practices to reduce stress. www.meaction.net/event-detail... #caregiver #carer #Support

Discover Magazine: 'Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome' "ME/CFS affects a lot of different parts of the body...analyzing plasma gives you access to what's going on in those different parts." - Maureen Hanson www.discovermagazine.com/newly-identi...

PLEASE NOTE: We have moved this event to October 28 at 3 pm ET! Join us for a virtual workshop- Dealing with Grief and Chronic Illness with Marisa Renee Lee. Register: ow.ly/ob5r50X5j5A If need free ticket: forms.gle/rQYxuXUxddhs... #pwME #MECFS #LongCovid #Spoonie

1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November. The main presentations take place at: 1 pm - 5 pm Eastern Time 6 pm - 10 pm London Time 7 pm - 11 pm Brussels Time #ICanCME2025

We know there is a lot going on in the world right now! This is your reminder to stop and take at least 3 deep breaths. Feel the surface beneath you. Sink into it. Inhale for 4, exhale for 6. Repeat as often as needed. #pwME #pwLC #Spoonie #SelfCare

Exciting to see this 🔥 Specialised care for severely affected ME/CFS patients Free: www.tandfonline.com/doi/full/10.... Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach #MEcfs #SevereME #PwME

Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.

Need a little distraction? Enjoy learning about a new book? Join us for a Q&A with author and #MEAction volunteer Brian Buckbee TOMORROW - October 1st at 3 pm ET! Register here: www.meaction.net/event-detail... #pwME #Book #author #disability #chronicIllness #InvisibleIllness

1) After big genetic studies on ME/CFS, hEDS and fibromyalgia, there's now also a new one on Long Covid. The sample size was much lower though so none of the comparisons reached genome-wide significance.

#MEAction is asking you to take action to save telehealth NOW! You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: www.meactions.org/telehealth #Telehealth #PwME #LongCovid #MECFS #Congress #Disability

Telehealth is crucial for the tens of millions of Americans w/ #MyalgicEncephalomyelitis, #LongCovid, or dozens of other major illnesses and/or #disabilities. Please help us save telehealth! Even if you're healthy, this greatly impacts someone you love❤️

1) 🇵🇱 A new study from Poland reports that ME/CFS patients have a different gut microbial composition than healthy controls. The authors found a higher relative abundance of Bacteroidetes and a lower level of Firmicutes, consistent with previous papers.

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 22-28. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

Join us October 1st at 3 pm ET as we host a discussion and Q&A with Brian Buckbee, author of We Should All Be Birds. www.meaction.net/event-detail... A little birdie told us there might be a giveaway! 😉 #pwME #MECFS #LongCovid

Need #CME, #MedSky? You can take this Mayo Clinic #MECFS (myalgic encephalomyelitis/chronic fatigue syndrome) CME-- but just until Tuesday! Infection-associated chronic conditions are more prevalent than ever but under-taught in med school. Don't miss out on this opportunity to learn dx and tx!

Take action to save telehealth now! You can call or email your member of Congress. To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth #Telehealth #PwME #MECFS #LongCovid #disability

A soft space to land. 💙 BHC holds 2 support groups each month, 2nd & 3rd Tuesdays, 1:00 pm MDT. Join us: http://batemanhornecenter.org/events/ #MECFS #LongCOVID #PeerSupport

We have wonderful events to add to your Fall calendar. Register: www.meaction.net/event-list Oct 1 3 pm ET: Q&A with Author Brian Buckbee Oct 9 3 pm ET: Grief is Love by Marisa Renee Lee Oct 21 3 pm ET: Dealing with Grief & Chronic Illness: A Workshop with Marisa Renee Lee #pwME #MECFS

1) There's a new review on the impact of ME/CFS. It concludes that "ME/CFS imposes a substantial health, social and economic burden of disease" but argues that its true burden may be even higher because many patients likely remain undiagnosed.

Take action TODAY! Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1. Sample language & link: docs.google.com/document/d/1... #MedEd #CME #MECFS

We are thrilled to bring you a Q&A with author & #MEAction volunteer Brian Buckbee on Oct 1st at 3 pm ET! Register: www.meaction.net/event-detail... "We Should All Be Birds" is "a charming & moving debut memoir about how a man with a mystery illness saves a pigeon, & how the pigeon saves the man."

9/23, NIH: 'Overactive immune responses in ME/CFS' 'This suggests that the immune system in ME/CFS may be hypersensitive to infection. People with ME/CFS also had altered levels of certain proteins consistent with immune dysregulation.' www.nih.gov/news-events/...

Dr Jarred Younger highlights a new (small) clinical trial showing that solriamfetol reduces self-reported fatigue in ME/CFS. [10 mins] +Transcript tinyurl.com/y6zk4w6n

#MEAction Minnesota state chapter lead Terri Wilder shares how advocacy works and updates us on the fight for ME and Long COVID in Minnesota: www.meaction.net/post/advocac... #Minnesota #PwME #MECFS #LongCovid

☕ Introducing Coffee with a Clinician, launching Oct 2025! Free monthly Zoom (30–45 mins) led by expert knowledge. Learn from the Clinical Care Guide or join Q&A. An optional $5 “coffee” donation helps us connect with more clinicians worldwide: https://bit.ly/4grlbXr #MECFS #LongCOVID #Fibro

It's officially hoodie season! Happy Fall Y'all! We have more hoodie options than ever - zip- up & pullover with tons of new designs. Which one is looking coziest to you? www.bonfire.com/store/meacti... We also have tees, sweatshirts, pants, mugs & more! #PwME #Spoonie #MECFS #LongCovid

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 15 - 21. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome @sunsopeningband.bsky.social Todd E. Davenport et al. journals.sagepub.com/doi/10.3233/... #PEM #ME/CFS #b2bCPET

It is more important than ever to be practicing self-care. However, the traditional methods are sometimes not accessible to those with ME or other complex chronic illnesses. What are ways that you have found to practice self-care? What can you do today? #pwME #SelfCare #PwLC #spoonie

Dr Moreau's team found low Haptoglobin - was linked 2 worse PEM sx & poorer cognitive performance. It's strong evidence of genetic contribution to PEM in ME/CFS & cld serve as biomarker 2 better dx ME/CFS, identify pt subgroups & guide clinical management tinyurl.com/bdd2h7bh

In Mexico pwME hang on by a thread, no #ME experts or support. Knowing about #ME #PEM requires big privilege (online access, EN understanding, private docs). Being able to avoid physical work is also big privilege. #SevereME & #MEKills in countries like mine go uncounted. #GreatestMEdicalScandal

BHC: “Mitochondria in the Spotlight: From NIH Recognition to Research Advances” ‘NIH’s acknowledgment is not the end of the story but the beginning of a new chapter, one where mitochondrial biology may unlock long-sought answers for ME/CFS, Long COVID..’ batemanhornecenter.org/mitochondria...

From @thesicktimes.org HHS coverage: “The makeup of the panels was not representative of the affected population to such a degree that the homogeneity appeared pointed and purposeful,” said #MEAction scientific director Jaime Seltzer. @exceedhergrasp1.bsky.social thesicktimes.org/2025/09/18/k...

NEW: RFK Jr.'s HHS has committed to prioritizing Long COVID, but it's unclear if the agency will dedicate new funding to research and supports. @mileswgriffis.bsky.social and I recap what we learned at today's roundtable event for @thesicktimes.org: thesicktimes.org/2025/09/18/k...

Two more threads discussing today's HHS Long COVID Roundtable. #MEAction's Scientific Director @exceedhergrasp1.bsky.social bsky.app/profile/exce... And @motherjones.com @juliametraux.bsky.social bsky.app/profile/juli... #LongCovid #HHS #MECFS

Thread covering the HHS Long COVID roundtable. #LongCovid #MECFS

Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1st. Sample language & links: docs.google.com/document/d/1... #MedEd #CME #MECFS #NEISvoid

Check out the newest anthology from @pillowwriters.bsky.social!!! We just heard some powerful samples from the anthology. A portion of your purchase goes to support #MEAction! US Amazon link: a.co/d/5zSkg8U UK Amazon link: amzn.eu/d/6fb8HeO Canada Amazon link: www.amazon.ca/Near-Life-Ex...

Oh, so they're telling #NIH staff what they can do and where they can go in their free time, again. Guessing this is illegal, but by the time they prove it, the conference will have passed. The conference should make all materials publicly available afterwards.

Today there will be a Long COVID Roundtable live by HHS (Health & Human Services). September 18, 2025 | 2:00 PM - 5:00 PM EDT "Invisible Illness: Leading the Way on Long COVID" hhs.gov/live/live-2/in… Livestream on HHS.gov, X, YouTube, and Facebook.#LongCovidid

This is today! Hope to see you there! #pwME #pwLC #spoonie #chronicIllness us06web.zoom.us/meeting/regi...

Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)

September is #SuicidePreventionMonth and we will be sharing resources and starting conversations across our social media. Talking about suicide isn’t harmful — silence is. We maintain a list of resources www.meaction.net/crisis-resou... Or go to findahelpline.com. @namicommunicate.bsky.social

Monarez: "Kennedy demanded 2 things of me that were were inconsistent w/ my oath of office. He directed me to commit in advance to approving every ACIP recommendation regardless of the scientific evidence. He also directed me to dismiss career officials responsible for vaccine policy without cause"

Join us TOMORROW for a call party to contact our elected officials about upcoming telehealth legislation - Sept. 17th at 12 pm PT/3 pm ET. Invite friends and allies! RSVP here: ow.ly/6Gnw50WNS1E Call script & more info: www.meactions.org/telehealth #pwME #Telehealth #MECFS #Disability

You can find out more about the paper in the thread I wrote when it was first released, here: bsky.app/profile/exce...

We’re proud to join #NationalVoterRegistrationDay on 9/16 as a Community Partner! Together, we’re celebrating democracy by helping every eligible American get registered & #VoteReady for 2025. Register or check your status: nationalvoterregistrationday.org/register-to-... #pwME #Disability

Take action today! Contact your doctor or nurse practitioner to let them know they have 2 more weeks to take the Mayo Clinic Proceeding CME on ME/CFS. Sample messaging: docs.google.com/document/d/1... Thank you! #MedEd #pwME #MECFS #CME Thank you to @exceedhergrasp1.bsky.social!