Melissa Mazur

Philly representing this International ME Awareness Day (May 12th) thanks to @tina_yes @solve_cfs and @pecoconnect . This message will be scrolling atop the Philly skyline today, tomorrow (May 12th), and Wednesday (May 13th) to highlight the lack of treatments/cures for myalgic encephalomyelitis (misnamed chronic fatigue syndrome and sometimes called ME/cfs)— a debilitating condition involving neuroimmune and metabolic dysfunction, often triggered by an infection such as C19. Too many have suffered for too long! We need biomedical research investments to find effective treatments/cures! #LightUpforMEcfs #WorldMEDay #MillionsMissing #MEcfsAwareness #MEcfs Video description: a video of the PECO building in downtown Philadelphia, PA USA at dusk which has a banner of a scrolling lighted messages at the top. This video shows the message “ME/CFS Awareness Day - No FDA Approved Treatments, No Cure - SolveME.org”

U.S. advocacy item! By Friday COB! Please contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations. DM me and I can send you can send you the link for an easy call or email tool which sends directly to your Senators with scripts and templates. Campaign by Long COVID Campaign and the excellent @meighanstone . 👏👏👏 [ID: Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID]

“I #MaskUp because I don’t want to become further disabled by another infection.”—Behind the N95 respirator is Melissa Mazur @phillyphile215 , who’s a first wave COVID long hauler, who got sick in March 2020 and never got better. “I was young, very active, and healthy when I got sick and could not have foreseen how brutal Long COVlD would be for me. In addition to heart issues, I have now developed POTS/Dysautonomia and Myalgic Encephalomyelitis (M.E.) as well. While I am fortunate to have regained some baseline by finally finding therapeutics that worked for me, I do not want to erase those gains and reduce my functionality further.  I enjoy walking around Philly—my hometown which I love—and which my recent baseline increases have made it easier to do. As research has shown, another reinfection could further disable me.” An advocate for prevention, health equity, and Long COVlD, Melissa shares her perspective to raise awareness with #MaskTogetherAmerica. “I see my mask as an important tool in my advocacy as well—whether I’m attending a hearing on the Hill organized by Long COVlD Campaign ‘LCCampaign’, working with @JohnVsJonVsME to raise awareness about M.E., or networking at a professional event—my mask is a reminder that we need to be thinking about sustainable solutions to curtail this current pandemic and prevent future ones. There are so many structural changes we can make like implementing clean air infrastructure, requiring masks in healthcare settings to mitigate transmission (like we do with hand washing), and providing workers with paid sick leave or remote work options—all of which can create a healthier, more inclusive society for all.”

I want this to be a metaphor for the current moment—the reflection showing what’s behind me while focused forward on a blinding light opening to a new perspective. (I also absolutely love this seat on the train and grabbing it today was a glimmer!) #WhyILovePhilly #TransitAdventures [video description: a video looking out the front window of a Septa El car coming out of the tunnel on the East side of the city before Spring Garden station. The first part of the video shows a reflection of the car behind me in the glass and a blinding light ahead. The second half out of the tunnel reveals the tracks and outdoor world ahead]

Philly is not a real place. #WhyILovePhilly [ID: a video of a car traffic on Lombard Street in Philly where one of the cars passing is decorated with @philadelphiaeagles decor and playing the Eagles fight song. This is one of several cars like this driving around Philly which you can catch randomly on most days]

Happy Opening Day, friends! #WhyILoveSouthPhilly #WhyILovePhilly [ID: photo of a window of a rowhome in South Philly with Phillies decor including two pennants, a neon lit Phanatic and lit Phillies logo along with baseball vertical streamers]

On March 14, 2020, I got sick and never got better. This year’s Covidversary hit especially hard because it fell on a Saturday, just like when it all started. As silly as it may seem, I got myself a cake to commemorate the day—inspired by @emilyeff who did the same for hers. Ironically, the cake shifted in the box on the way home, and, like me, was damaged on one side. Normally this would have frustrated me, but here it felt appropriate. I wish I could have shared this cake with others, made it a proper grief ritual like the kind @priyaparker @brenebrown and @katecbowler talk about. But society wants to forget the losses of the past 6 years, including the 20+ million (and counting) Americans like me who are sick with Long C0V1D with no approved treatments or cures. While I know science still needs to understand what is happening in our bodies, I wish society were better equipped to support and include those of us in the NEIS (No End in Sight) Void—like @megan.mish.mash has talked about, making chronic-illness-diagnosis showers a thing. So much of this grief and loneliness could be avoided, if we lived in a society that wasn’t built on ableism. [ID: 1) a photo of a vanilla cake from @isgropastries with white icing and blue and yellow flowers and blue writing that says “6 years of heartache” slide off center on a round piece of gold cardboard 2) photo of same cake showing a smashed side 3) slice of the same cake with a lot candle in it on a glass plate]

Happy St. Joseph’s Day! Hoping this delicious pastry brings me luck 🙏 [ID: photo of a zeppoli Italian pastry (the traditional pastry to eat on St. Joseph’s Day March 19th) with vanilla filling and a red cherry in a clear plastic container being held up in front of Frangelli’s bakery in South Philadelphia]

Happy St. Paddy’s Day, South Philly style! (I was hoping to pair it with some Blackthorn but no such luck…pun intended)! [image description: photo of two blow up decorations of leprechauns, one on a motorcycle with a pot of gold on the back that says “Happy St Patrick’s Day” with rainbow flames coming out the back and another on the ground with a beer in his hand, in front of a house in South Philly]

Philly Philly representin’ this International LC Awareness Day (March 15th) thanks to @pecoconnect 👏👏👏 Video description: a video of the PECO building in downtown Philadelphia, PA USA at night which has a banner of scrolling lighted messages at the top. This video shows the message “International Long Cov*d Awareness Day — Cure Long C0V1D” [alternations in spelling for algo]

@am0slee provides the perfect soundtrack for Philly sploring on a winter’s day. #WhyILovePhilly [Video description: video of the elevator train in Philly, aka the El, approaching Tioga station at sunset with the city skyline in the background]

Italian Market walks. #WhyILovePhilly [video description: a flickering neon sign of a personified avocado wearing sunglasses and dabbing]