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#MEAction Network @meactnet.bsky.social · 1d

Hi! There are two events with Marisa Renee Lee that we are hosting. A free, Book Reading and Q&A on this Thursday. Then a workshop on grief on Tuesday, Oct 28th.

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#MEAction Network @meactnet.bsky.social · 5d

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

Photo from #MEAction Still Sick Still Fighting protest in front of the White House showing protesters lying on the sidewalk. Text above: MEAction protest guide available. Text below: Part 1: For people who are planning a protest/activism to include people with ME Part 2: For those planning to attend an in-person protest that have complex chronic illness

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#MEAction Network @meactnet.bsky.social · 6d

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

#MEAction Partner Caregiver Support Call | #MEAction

The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...

www.meaction.net

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#MEAction Network @meactnet.bsky.social · 6d

We are loving seeing these new designs in action! Thanks to @hospmom.bsky.social for designing and modeling for us!

Check out an amazing selection of chronic illness gear now available! www.bonfire.com/store/meacti...

#pwME #spoonie #chronicIllness #MECFS #LongCovid

Jess ( a woman with light skin and red hair pulled back) is wearing a low power mode black tee, kicking ass taking naps sweatpants, rose tinted sunglasses, headphones, and eye mask while holding a water bottle in front of a bed. she is smiling and giving a thumbs up.

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#MEAction Network @meactnet.bsky.social · 6d

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

Graphic with details available in the post. Text against a purple backdrop. Bright star with text: New Date. Photo of the book Grief is Love at top of graphic. Text beneath: Dealing with Grief and Chronic Illness A workshop with Marisa Renee Lee Tuesday October 28th at 12 pm PT/ 3 pm ET. Tickets available for a suggested donation.

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#MEAction Network @meactnet.bsky.social · 6d

Our sharing fundraiser policy: docs.google.com/document/d/1...

#MEAction Network @meactnet.bsky.social · 6d

We are sharingthis fundraiser for a member of our community.

Unfortunately, they have moved from a skilled nursing facility to a board & care home which offers less services. They are at risk of losing that by the end of the year and face being unhoused.

Link: gofund.me/214539f33

#pwME #MECFS

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#MEAction Network @meactnet.bsky.social · 6d

Have not heard.

#MEAction Network @meactnet.bsky.social · 7d

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

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#MEAction Network @meactnet.bsky.social · 7d

Hope to see you soon! Should be a great chat and a little birdie told us there will be a giveaway!

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #spoonie #chronicIllness

#MEAction Network @meactnet.bsky.social · 8d

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

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Reposted by #MEAction Network

It's ME(Jaime) @exceedhergrasp1.bsky.social · 7d

Hey, #MedSky & #SciSky! New text from Elsevier out today, "The Scientific Basis of Fatigue", with multiple chapters on different diseases, including #MECFS, COVID, Parkinson's, stroke and MS.

Proud to be the co-author of the #MECFS chapter with authors from Mayo and Bateman-Horne! More info:🧪

#MEAction Network @meactnet.bsky.social · 7d

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.

Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.”
Jaime Seltzer,
Scientific Director, #MEAction
Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.

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#MEAction Network @meactnet.bsky.social · 7d

Research and clinical care has been tough and getting tougher. You can show appreciation for the authors of this paper by signing the card here, if you are so moved: recocards.com/greeting-car....

#MECFS

Online group greeting cards | RecoCards.com

Online group greeting cards for farewell, birthday, special occasions.

recocards.com

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#MEAction Network @meactnet.bsky.social · 7d

'The Scientific Basis of Fatigue' is comprehensive, delving into distinctions between physical vs mental fatigue, research on molecular and cellular aspects and models of fatigue, measuring fatigue, and diagnosis and treatment.

shop.elsevier.com/books/the-sc...

#pwME #MyalgicEncephalomyelitis

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#MEAction Network @meactnet.bsky.social · 7d

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.

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#MEAction Network @meactnet.bsky.social · 8d

Telemedicine improves healthcare by making it more equitable, accessible, and affordable — especially for people who face barriers to in-person care.

I urge you to support these bills to ensure Medicare continues covering telehealth services and that no one loses access to the care they depend on.

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#MEAction Network @meactnet.bsky.social · 8d

...Medicare telehealth flexibilities permanent.

These telehealth expansions, which have been lifesaving for people with ME/CFS, Long COVID, and other chronic illnesses and disabilities, are set to expire on September 30, 2025, unless Congress acts.

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#MEAction Network @meactnet.bsky.social · 8d

Hi, this is {Your Name}. I’m a constituent calling to discuss an important healthcare issue that affects our community — telemedicine.

The Telehealth Modernization Act (S.2709) & the CONNECT for Health Act (H.R. 4206 / S.1261) are bipartisan bills introduced that would make many of the beneficial..

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#MEAction Network @meactnet.bsky.social · 8d

If you scroll down it starts here.

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#MEAction Network @meactnet.bsky.social · 8d

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

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#MEAction Network @meactnet.bsky.social · 9d

#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

Image of a megaphone at bottom corner and Capitol building in top right corner. Text: Contact congress today to keep telehealth!

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#MEAction Network @meactnet.bsky.social · 9d

Thank you! Let's make sure Congress hears us loud and clear! Telehealth is so critical!

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Reposted by #MEAction Network

GiannaMarie @giannamarie.bsky.social · 10d

Will be calling tomorrow! Thank you for this very informative post @meactnet.bsky.social you've made it super easy to understand what's going on and take action!

#MEAction Network @meactnet.bsky.social · 12d

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

Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!

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#MEAction Network @meactnet.bsky.social · 9d

Thank you so much for sharing! We love these new designs by a person with ME- @hospmom.bsky.social.

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Reposted by #MEAction Network

The Real McCoy @rippermd41.bsky.social · 10d

There’s been some fun disabilty merch lately.

As I come across new ones I’ll add to the thread.

If you know any, share them below.

First up is ME Action’s new line up.

bsky.app/profile/meac...

#MEAction Network @meactnet.bsky.social · 26d

We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti...

Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that!

Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess!

#pwME

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Reposted by #MEAction Network

Litsa Dremousis @litsadremousis.bsky.social · 10d

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❤️

#MEAction Network @meactnet.bsky.social · 12d

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

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