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A note from #MEAction executive director, Laurie Jones:

I’m so impressed with you all, how powerful you are and how your compassion for each other fuels our fight for justice.

Monday had major challenges as we gathered for the event. Between broken down cars and printing that never arrived, not to mention the late nights trying to fight against funding cuts in Minnesota we faced leading up to the day, I was overwhelmed before I ever walked onto Upper Senate Park.

But then you all reminded me, as you always do, that there is the big picture to focus on- its our common fight that matters. Your beautiful speeches included: a 17 year old, a teacher and researcher, and a cancer nurse. We had a policy expert from @NewDisabledSouth & @Solve_CFS’s CEO. Also included was a caregiver, ADAPT @realnatladapt activists, an artist, and so many others who shared their demands and their fight.

@TheSickTimes wrote an article that covered our fight & our theme of SOS: Save our support Systems. Save our Science. Save our Society.

On Tuesday, we hit the Hill, going to Senate appropriations staffers & Representatives that will directly affect our fate. Amazing volunteers, Danielle & TD, came armed with the stories & photos submitted to us from those from home- so all of you not in DC were with us, very much, adding a face and a voice to ME & Long Covid.

A power couple of this years ##MillionsMissing, David and Shaina made it to the Medicaid hearing to talk to their representatives and to witness our friends at ADAPT get arrested for their protest for disability justice.

And those at home shared their powerful stories!

And there is loads more work ahead, because the fight continues. Rest. Pace. And when you are ready, take our actions and encourage others to as well.

Donate, sign the letter, call Congress, post your story. We have to keep fighting and we will. Link in bio.

We will be sharing more this week with more highlights from this amazing community!

There is light through this darkness. I thank you. #MEAction thanks you.

#PwME #MyalgicE #DisabilitySOS #MECFS #LongCovid #protectMedicaid #telehealth

ID: collage of photos from #MillionsMissing collage of photos from #MillionsMissing. Some are in front of the Capitol and some are from home.

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With everything going on yesterday, we never got around to posting this year’s group zoom photo. This by no means makes up our whole #MEAction #Georgia group, but it shows a few of the people who worked so hard this year to fight for us to hold onto any science, support, awareness, and recognition we have left. These are some of our precious advocates who continue to show up and fight. We are grateful to all of you!! Thank you to all the patient advocates and our few non-disabled advocates! We couldn’t do as much as we do without this beautiful community! Rest well this day after #millionsmissing - there will be more work for us on Sunday. Celebrate this Georgia crew with us and join us for #TeaandaTedTalk at 1pm ET!!! (Link to RSVP in bio)

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I am nominating Philly Phavorite @dralastanford to join the fight against #GreatestMEdicalScandal!!! I am a big fan of you and your work focused on equity and racial justice in medicine in Philly—and beyond!

As advocates like @chimereladawn and @minadjenkins have highlighted time and again, Black Americans with Myalgic Encephalomyelitis (ME or ME/cfs) have an even harder time getting a diagnosis and any help from doctors. We need doctors like you, Dr. Stanford, to combat this scandal within a scandal.

Please visit JohnVsJon.com for a general overview of what #GreatestMEdicalScandal is, watch the documentary Unrest in which @jen.brea shows thru her story how #pwME are mistreated and dismissed, reach out to @chimereladawn or @minadjenkins to hear their first hand experiences, or read about the activism of Tinu Abayomi-Paul who suffered from ME and died last fall. https://thesicktimes.org/2024/10/04/tinu-abayomi-paul-writer-disability-advocate-and-person-with-long-covid-dies-at-52/

We need your help! 🙏 🛟 @johnvsjonvsme @meactnet #MillionsMissing #worldmeday2025 #myalgicencephalomyelitis

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Most of our community are not well enough to protest on the street but we are making our voices heard from our beds about why cuts to ME/CFS research funding is so devastating to our community. Wilhelmina Jenkins is one of the #MillionsMissing who are showing up from our beds, our homes, in DC & around the world on May 12th. Learn more at
LINK IN BIO.

As Wilhelmina shares. "I am here in my bed now. Unable to leave, unable to go out into the world, but from here, I fight as best I can, because nothing is more important than research to understand this illness. There are millions of us. We need urgency from our agencies."

Thank you to Wilhelmina for the sacrifice we know making this video was as well as for her many years of service via advocacy and support! We are huge Wilhelmina fans here at MEAction- as we are sure anyone who knows her is!

Please join Wilhelmina in sending a loud SOS to be heard by elected officials and other decision makers this May 12th.

#MECFS #MyalgicEncephalomyelitis #disability #LongCovid #BIPOC #disability #DisabilityJustice #pwME #DisabilitySOS #MEAction #Georgia
@meactionga

ID: Wilhelmina ( a black woman wearing a red shirt) lies in bed as she speaks to the camera.

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it was a true pleasure to read sam’s dissertation on such a relevant and innovative topic! in particular, I freakin loved how his research is at the intersection of marketing x advocacy.

if companies can use marketing to persuade us to buy their shytty products, why not use it to spread awareness about a life changing condition 👀

have u engaged with the LC community on reddit?
if you did, what motivated you? what was it like?
let us know in the comments below 👇🏼

ps. did i spell redditor right or nah? 😅😂

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Today is #MEAwarenessDay. In 2019, @MinaDJenkins wrote a piece for @meactnet highlighting the challenges Black patients face in obtaining an ME/CFS diagnosis. Five years later, many people with long COVID meet the criteria for ME/CFS. As a community, we must grow our knowledge and be ready to take action to support Black long haulers. Here’s a few steps you can take today:
1) Prevent long COVID by stopping the spread of COVID-19. Wear an N95 mask in public spaces and encourage others to do the same.

2) Support our neighbors with long COVID. Offer tangible support to those suffering. Tangible support can look like many things: offering to pick up their groceries, support with home cleaning, check-in texts, and more.

3) Increase community awareness. Continue to research long COVID and inform loved ones of what the symptoms look like.

Alt text in captions. (Please share these illustrations with credit)

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💌 This February, we want to uplift and honor nine extraordinary Black disability justice advocates who are involved in ME and Long COVID advocacy.

Although ME affects people of every demographic, it has historically been racialized as a "white" disease that primarily affects upper-class white women, leaving Black people with ME invisible, undiagnosed, and untreated.

Today, despite the fact that Black people have been disproportionately impacted by COVID since 2020, white people are overrepresented in Long COVID advocacy organizations and COVID justice community spaces. And although Maine, New Hampshire, and Vermont make up some of the most predominantly white states in the US, we at #MEAction NNE understand that disability justice is best understood from the vantage point of the most marginalized. Thus, we wanted to center Black advocates and express our solidarity with them during this Black History Month.

❤️ #MEAction Northern New England is extremely proud to have collaborated with Giovanni Clarke and Netia McCray at our medical education event, "The Untreated Epidemic," a first-of-its-kind conference hosted at the Dartmouth Hitchcock Medical Center. You can find recordings of the conference on the #MEAction YouTube channel.

🖤 Celebrating Black History does not end after BHM, and we hope that you will contribute to the fundraisers we have platformed in this post. We ask our friends to join our fight against ableism by materially supporting the people who make Black history every day.

Finally, we apologize for the delay on this post. Although we began writing it in mid-February, limited spoons on a volunteer capacity delayed its publication until now. Despite this, Black advocates and patients were not an afterthought for or Chapter, and we spent time learning about racial disparities in ME and Long COVID awareness, diagnoses, and treatment.

Alt text will be posted in the comments below.

Tags:
#BlackHistoryMonth #BHM #BlackAndDisabled #BlackDisabledLivesMatter #BlackDisabledHistory #BlackDisabledAndProud #ChronicIllness #mecfs #PatientAdvocacy #DisabilityRights #MedicalEducation #LongCovid #PwME #MyalgicE #Longhaulers

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I’ve been trying to think of the right words to celebrate and thank my newfound friend family. @MEActionGA scooped me up from a twitter post and welcomed me into their circle with nothing but love, generosity and indefatigable strength of heart. For people who spend their days fighting to function, they have an unlimited supply of support, encouragement and celebration for each other and I had no idea how immediately I would cherish their friendship.

Somedays, the group conversation is heartbreakingly vulnerable but the hurt and fear and loss is met with a flood of empathy and kindness and love that will overflow your heart as quickly as sharing someone’s despair will break it. Fears are met with encouragement and understanding, Crashes with messages that feel like blankets and warmth. And the small and big wins are met with every particle of celebration and joy we have available. These people are extraordinary.

From our couches, our beds, and our phones, we have an unshakable network of strength and I am in awe of the ways these people make their voices heard in the world. Advocacy on twitter, virtual book events, videos sharing their stories for #millionsmissing and #meawarenessweek… They inspire and energize my heart daily, no matter what level of actual energy any of us have.

To my ME GA friends, it is an honor and a gift to be part of our family and to count you as my friends, as well as my teachers. 💙💙💙

#chronicillnesslife #spoonies #findthehelpers #meawarenessmonth #invisibleillness #energylimitingconditions #disability #yourpersonalcheerleader #myalgicencephalomyelitis #mecfs

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"If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it. There are good researchers working hard to understand this poorly understood disease, and as long as they are doing the work, there is hope.

Be very gentle with yourself. Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on." Link in our bio.
https://www.uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome

The wise and beloved by all of us here at #MEAction Wilhelmina Jenkins (#MEAction Georgia member) shared her patient perspective with Up-To-Date. Up-To-date helps "healthcare professionals make appropriate care decisions and drive better outcomes, UpToDate delivers evidence-based clinical decision support that is clear, actionable, and rich with real-world insights."

“Patient Perspectives” shared on Up-To-Date is a collection of narratives that describe the experience of a patient with a medical condition in their own words. We applaud this effort as it is critical to include the patient experience in medical education. Thank you to Wilhelmina for sharing!

#pwME #MECFS #MyalgicEncephalomyelitis #MedEd @minadjenkins

ID: Social square with quote featured at the beginning of the post.

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Guidelines should be changed when it is reasonable and safe for populations most vulnerable.

What are you doing to keep yourself, your family, your friends, your workplace, your community, your country, and the global Human Family safe?

This is going to look different for everyone, but if you are still trying to do more to keep others safe, we see you and we appreciate you.

Every bit adds up.

Founder of MakeGoodTogether, Michelle has a genetic blood clotting disorder called #factorvleiden - making it very risky if she were to catch #COVID. So from the bottom of our hearts, THANK YOU for staying vigilant and kind during these times when some of us are transitioning into less risk-adverse territory.

🙏💕

#mecfswarrior #vulnerable #chronicillness #masktogetheramerica #maskingforafriend #careforall #care #empathy #empathymatters #maskforchildren #lookoutforeachother #takecareofeachother #mecfsawareness #CDC #cdcguidelines #maskwithus #maskguidelines #chronicallyill #disabledlivesmatter #immunocompromised #Please #n95 #kindness #makegoodtogether #fvl #mecfs #myalgicencephalomyelitis #mewarrior

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We rise by lifting others. 🌺💪

On #internationalwomensday we’d like to remind everyone of how awesome it has been to work alongside you. We’ve seen the true power that comes with shining the spotlight on those doing good.

Women make up a majority of our promisers here. Hundreds of you have taken radical accountability of your influence to create a better tomorrow for all. A bit part of being a #makegoodinfluencer is always shining the light on those helping push forward a more inclusive and supportive future.

🏷 Tag someone who YOU see lifts OTHERS up.
❤️ Let’s spotlight the light shiners for once!

Number of followers don’t mean shit here. Your influence is monumental. Like gravitational! You are powerful. You change the world by your awesome action. And you inspire us every. single. day.

With gratitude & admiration,
Michelle & Eric

#makegoodtogether #makegoodinfluencers #spotlight #makegood #sunshine #internationalwomensday2022 #womensupportingwomen #womensday #womenempowerment #womenempoweringwomen #support #supporteachother #igotyou #igotyourback #togetherwerise #risetogether #riseup #rise #riseandshine #typography #womenwhodesign #tagsomeone #womanpower #womanempowerment #womenhelpingwomen #illustration #flowerillustration #handlettering

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“Just do not give up. Those who are listening who have #Covid who have not shared their stories; don’t allow fear to get in the way. You have to be brave. Someone needs to hear your story.”

Candace leads with grace, but that doesn’t mean she is not fierce. She is a strong advocate and beautiful soul. And we are grateful to be a part of the same family, the Human Family, alongside this shining star.

Touching excerpt from a conversation Eric and Candace had during an Instagram Live season (which you can view in the Videos section). What a light. Thank you @crps_conqueror

If you are considering sharing your story, know that your vulnerabilities are seen and appreciated. We are all fighting this virus in brave ways. How will you lead?

Special thanks to @wearebodypolitic for leading the charge with the #voicesofthevirus campaign; it’s more relevant now than ever. Gratitude.

And thank you to those who attended the “live” session. It’s always great building community.

#voicesofthevirus #brave #mycovidstory #covidstory #storiesmatter #courage #courageovercomfort #crps #longcovid #kindnessmatters #pandemic #deltavariant #covid_19 #covidー19 #doyourpart #covidboundaries #leadbyexample #empathy #empathymatters #stopthevirus #endcovid19 #loveyourneighbor #goldenrule #makegoodtogether #crpswarrior #chronicillness #crpsawareness #longhaulers #longcovid19

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