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Reposted by Holly L (First Grace28 at the other place) she/her

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 1d

@exceedhergrasp1.bsky.social, Ravi Ganesh, and Jen Bell and Brayden Yellman from @batemanhornecenter.bsky.social have all been guides and inspiration for me since the start of my journey in ME/CFS care. I could not think of a better experience to have with my first textbook chapter. Thank you all 💙

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Reposted by Holly L (First Grace28 at the other place) she/her

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 1d

And thank you also to everyone in the community who took the time to send thank you messages!! Wow!! We received the eCard and are so overwhelmed (in the best way) by your support and are so so grateful. 🥹 @meactnet.bsky.social

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Reposted by Holly L (First Grace28 at the other place) she/her

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 1d

Truly honored to have lead the inaugural chapter on #MECFS management in the @elsevierconnect.bsky.social textbook Scientific Basis of Fatigue, "Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Narrative." The greatest honor of all was co-authoring with my role models--

Dr. Stephanie Grach, a Caucasian woman with brown eyes and (currently) shoulder-length brown hair, holding a textbook open to the mentioned chapter's first page. Wearing a blue suit jacket, red/blue shirt, and blue KN95 mask, against a purple-gray background.

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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 6d

I got a low power mode v-neck tee in teal! Check out all the colors and options!

#spoonie #chronicIllness #disability

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 7d

Sign a thank you here!

#pwME #MyalgicEncephalomyelitis #MECFS

#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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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 8d

Yes and yes! Hope you can join tomorrow!

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability

#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 Holly L (First Grace28 at the other place) she/her

Elizabeth Warren @warren.senate.gov · 10d

We're in a health care emergency: 15 MILLION people are going to lose their health care. Millions are about to see their premiums skyrocket.

Republicans are in power. They need to roll back their massive health care cuts and fund the government.

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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 10d

It's awesome!

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Reposted by Holly L (First Grace28 at the other place) she/her

Barack Obama @barackobama.bsky.social · 10d

Republicans would rather shut down the government than help millions of Americans afford health care. This article tells some of their stories, and is a good reminder of what’s at stake.

These people have found their health care at the center of a shutdown showdown

Small business owners, self-employed people and early retirees are among the 24 million Americans who could lose the tax credit

www.usatoday.com

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Reposted by Holly L (First Grace28 at the other place) she/her

It's ME(Jaime) @exceedhergrasp1.bsky.social · 11d

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!

#MEAction Network @meactnet.bsky.social · 22d

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!

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 10d

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

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Reposted by Holly L (First Grace28 at the other place) she/her

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

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

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Reposted by Holly L (First Grace28 at the other place) she/her

#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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Reposted by Holly L (First Grace28 at the other place) she/her

Kristin Houlihan, Writer @kristinwrites.bsky.social · 15d

I LOVE my zip-up hoodie! A great purchase — I have that greenish bluish teal ish color in the top left of the picture but with an older design. LOVE.

#MEAction Network @meactnet.bsky.social · 16d

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

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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 13d

Looking forward to it! #pwME #MyalgicEncephalomyelitis

#MEAction Network @meactnet.bsky.social · 15d

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."

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 14d

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

Laptop showing the Mayo Clinic Proceedings paper and CME "Diagnosis and Management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome" Text above the laptop: ME/CFS CME Available! Until October 1st! Send it to your clinician now. Jaime Seltzer was one of the co-authors. bit.ly/MayoCME8

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 13d

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

Graphic with the 3 events and information on each shared in the post. #MEAction October Events 1. Photo of book cover "We Should All Be Birds" Q & A with Author Brian Buckbee Oct. 1 3 pm ET 2. Photo of book "Grief is Love" Grief is Love by Marisa Renee Lee Oct. 9 3 pm ET 3. Photo of Marisa Renee Lee (Black woman smiling wearing black top) Dealing with Grief & Chronic Illness Oct. 21 3 pm ET

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Reposted by Holly L (First Grace28 at the other place) she/her

#MEAction Network @meactnet.bsky.social · 15d

#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

Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota

The launch of the Minnesota Home Help Navigation Program is proof that advocacy works.

www.meaction.net

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