Carol 🛌👩‍🦼😷

Hi. My name is Carol. I am one of the #MillionsMissing. I had mild ME and a thriving career in Software Engineering. On 03/2020, I got COVID and never recovered. Then on 02/2021, my home care nurse reinfected me, and COVID completely disabled me. 1/ #MEAwarenessDay #LongCovid

Thank you to our colleagues and research participants for making this contribution possible, out today. doi.org/10.1007/s12018…

#MECFS patients and caregivers, please fill out this survey to help shape decentralized clinical trials! This survey asks people living with symptoms of ME/CFS (regardless of trigger) — and caregivers and loved ones who support them — to help shape CTN Lite directly: which symptoms and biological systems to prioritize, which treatment categories matter most, and how to measure what truly improves function and quality of life. @OpenMedF docs.google.com/forms/d/e/1FAI…

@PhillyPhile215 @ellbail @Suzaku_is_tired @LizzieKro @RandomNWild @LizMEActGA @longcovid25 @Zegmeister @freshheroo @Melissa75667199 @darthfoo @lavalover0101 @IcecreamNancy @sheri0572198165 Emails sent and shared on Instagram stories.

@ellbail @Suzaku_is_tired @LizzieKro @RandomNWild @LizMEActGA @longcovid25 @Zegmeister @freshheroo @Melissa75667199 @darthfoo @lavalover0101 @TickedOffCodess @IcecreamNancy @sheri0572198165 can you call, email, or share by Friday/tomorrow COB?

Please take 10 minutes to call or email your Senators using this easy tool BY FRIDAY COB. Please also reshare bc the algo is totally gatekeeping. We need to tell Congress WE ARE STILL HERE!

@SenMarkey @SenTimKaine @SenDuckworth 2. ✉️ Email your Senators with the same ask using this handy LCC email tool tinyurl.com/LongCOVIDEmail which provides an email template & sends directly to your 2 Senators asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 5/x

@lara64390 For MCAS my docs call it the whole kitchen sink: ketotifen, Zyrtec, famotidine, Cromolyn, Luteolin, hydroxyzine, NAC, glutathione, vitamin C, vitamin D, quercetin, PEA, Montelukast, low dose naltrexone. I rotate h1 antihistamines every 60-90 days. Claritin, Xyzal, Allegra

Very severe ME means sunlight through a crack in the curtain can set you back for days. Not a headache. A full system crash.  #MEawareness

@lara64390 Was it the liquid version? I reacted to liquid LDA due to the sweetener Sucralose once I switched to compounded I started seeing benefits slowly. For HyperPOTS, I’m on ivabradine, Guanfacine, clonidine, propranolol. I can sit for up to 20 mins without PEM & walk to the bathroom

Thank you @fidjissimo for your openneess and vulnerability. Only patients truly know the suffering these horrible conditions bring. You shine an important light on #POTS #MECFS #LongCOVID and other complex conditions. Patients with these conditions get sick and don't get better. They can't work. Go to school. Celebrate holidays. Take a walk. Get out of bed. They lose the life they once knew. It's cruel. I watch too many people suffer. It's all I can think about. We have the power to help people now and quickly. Science & hypotheses exist. Data exists. Technology exists. We need to put this all together just like others have before us: @theMMRF @CF_Foundation @MichaelJFoxOrg are just a few examples of groups that have changed lives. @CODA_research takes a page from their playbook and is an urgently run research system that gets science out of the labs and into the hands of doctors and patients quickly. We are focused on progress. We are focused on treatments. Join us. Together we move faster and help more people. #PatientsCantWait

@sadfoxqueen @laramecfs I’m so sorry. This is the part that doesn’t get talked about enough: when the support system isn’t there and your body has taken everything from you. You deserve better than this.

@TickedOffCodess @laramecfs Or you’re like me and dying of starvation because your family won’t help you and cannot physically move and lost your ability to see and swallow

Very severe ME means your family learns to communicate in hand squeezes because your ears can’t tolerate their voices. This is someone’s life right now. Today. #MEawareness

@rhirhiarhii @iatrogenicse Communicating with your gaze because speaking costs too much. People need to hear this. Thank you for sharing it.

@TickedOffCodess @iatrogenicse Touch would be too much. Usually it would be if moaning gets worse or something. I used to communicate with my gaze, eyes would point at what was important. Sometimes I’d have to hurt myself just to speak an essential word It’s hellish Communication cards are useful

#MCAS means your body treats everything like a threat. Food. Smells. Temperature changes. Your own immune system is the thing trying to take you out.

In an international survey (n=1534) mdpi.com/2075-4418/9/1/…, 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise). Patients & professionals should be informed of this risk Exertion has ruined some people's health #MEcfs #PwME

Living just one more day with #MECFS is the saddest, most horrifying thing I could imagine.  But I’m going to do it.  I’m going to wake up tomorrow and let another day slide past me without living it.  And I’m going to get up the next day and do it again.  Acceptance, letting go, courage, crying, cursing, righteous anger, pulling out what’s left of my hair, whatever it takes to get through one more day and closer to that day when we get real treatments and a cure.  It breaks my heart every single day, but I can live with a broken heart.  I need to feel freedom again. #pwME #ChronicIllness

@meighanstone from LC Campaign still needs help because of toxic mold in her rental unit that’s not resolved. Please like, share, or donate if you can. gofundme.com/f/keep-long-co… TIA! ❤️🙏 (PS I wish this were an April Fools joke, but sadly the absurd reality of living with LC 😭)

@xoLaurenHillary 7 years bedbound. That is staggering. And the ‘just put your mind to it’ thing makes me want to scream. If willpower fixed this none of us would still be here fighting for basic care.

@TickedOffCodess Hi, it meee! 7 years bedbound in August and over 10 years homebound. Disabled for 20 years. My entire medical team act like just putting my "mind to it" will get me to do the things that'd get me better...but yeah, no! If I could just do the things it wouldn't be a conversation.

Some people with very severe ME haven’t left their bedroom in years. Not months. Years. And their doctors have never once come to them. #MEawareness

@myrowantree @bhanlon15 This is the scariest part of it. When you’re at your absolute worst you can’t even string a sentence together let alone fight for your own care. And the system just shrugs.

@TickedOffCodess @bhanlon15 I was mostly in bed for about 2 1/2 years and it’s absolutely terrifying what happens when you are too ill to advocate for yourself.

@Trickeewoo Adjust meds, monitor for complications, coordinate home care, actually listen. The bar is underground and they’re still not clearing it.

@TickedOffCodess What can they do even if they do come?