Matt

My friend Josh has severe Long Covid, along with many structural issues that are fortunately treatable, but expensive and mainly out of network. Here’s a link to his GoFundMe: gofund.me/a7afb0069

Please read. -YB. All proceeds from the GoFundMe will go to cover funeral costs and as temporary replacement of loss of income.

An excellent fundraiser for ME/CFS “We are raising funds for the WE&ME Foundation, which supports ME/CFS research and awareness. With your help, we want to support the creation of a biobank at the Medical University of Vienna.” gofundme.com/f/zeit-zum-hin…

When you’re feeling so sick the hours pass by in a hazy dream-like state, eyes closed, unmoving, and you have to force yourself to just drink water every once in a while… #longcovid #mecfs

@diannahaze .@NewsHour (PBS) just did a piece on Long COVID; hopefully it’ll get more attention and $$. I wish there were more we could do for you. Rest as easy as you can, and cry when you need to. It sucks, I know, but hopefully the rest will take you thru the valley to smoother paths.

I’m getting worse and worse every day. It’s so terrifying. I don’t know what to do except cry until I feel so sick I can’t cry anymore

@diannahaze You got this! I believe in you, and you’ve got that fella right there to support you through the rough patches! Remember those words of wisdom that Journey gave us all! 😁

I’m telling myself I’ve improved before, I can do it again. But I’m having a hard time believing myself…

@diannahaze Hopefully the rest will allow your body to recover from all the stress. It’s been a challenging year.

I haven’t been doing well. I’ve slowly & steadily declined since May. I’m back in bed most of the day. I suspect some of this has to do with the stress of losing my father this summer. But I also think I’ve been overdoing it and the PEM/crash cycle is contributing. 😔 #LongCOVID #mecfs

Album out Friday and a great week of shows coming up!! Where will we see you??

WCK was contacted by Israel's Coordinator of Government Activities in the Territories (COGAT), and confirmed the vehicle and persons of interest were not affiliated with WCK. We strongly condemn anyone posing as WCK or other humanitarians as this endangers civilians and aid workers. The safety and security of our teams are our top priority.

Here's why the #MECFS community continues to make loud, non stop noise about life with ME. It is well known for having the lowest quality of life . It also gets the least amount of funding. Heaven help if you are a woman! #UnitedForME #SevereME #MySeveralWorlds #SevereMEDay

A Moment of Silence for Severe ME/CFS Patients Today we honor the sickest among us.  The ones who have been least lucky among some of the least lucky people on earth.  It is only bad luck that lands us with ME/CFS, none of us did anything to deserve this or to cause this.  And no one with severe ME/CFS did anything to wind up sicker than anyone else. ♿ 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺: 𝘓𝘪𝘴𝘵𝘦𝘯 𝘵𝘰 𝘵𝘩𝘪𝘴 𝘱𝘪𝘦𝘤𝘦 𝘳𝘦𝘢𝘥 𝘢𝘭𝘰𝘶𝘥: whitneydafoe.com/mecfs/audio/25… The person most dear to me in this world has gone from moderate to extremely severe this spring and I weep for her everyday.  Because I know exactly what she is going through - it is absolute hell on earth - and I am completely helpless to help her or stop it.  All I can do is be here for her so she is not alone. People living with severe ME/CFS lose every single thing that defines being human - every single one - and experience symptoms that no human should have to endure.  Unworldly symptoms that you could not imagine in your worst nightmare - until you experience it.  Dehumanizing, incapacitating, uncontrollable, reality bending.  It is torture for every single second of existence worse than anything most humans on earth will ever experience. And these symptoms are layered with a lack of acknowledgement from the world that leaves these patients in the shadows of society as if they do not even exist anymore.  Or worse, lost on their own, abandoned and destined to die alone on the streets.  See my post "The True Horror of ME/CFS" where I walk you through the logical, factual steps that lead you to the hidden reality of what many severe ME/CFS patients face - dying alone on the streets. whitneydafoe.com/mecfs/?post=th… Think about that combination.  Living in a world worse than Hell, and being completely abandoned by society with no help and a feeling of no hope to ever get better, nothing to look forward to but endless agony and rejection and loss.  Because when you are in that pit of severe ME/CFS, you have no contact with anyone or any way to know about research progress or anything hopeful.  You are isolated and alone with nothing but your mind and punishing, relentless, never ending suffering. When you think about this, it is not a surprise that so many severe ME/CFS patients take their own lives.  But it is absolutely, unconscionably tragic and must end with real care, real treatments, and real, tangible hope. Anyone reading this is better off than those who are most severe and we should all share the horrifying reality of our lives - whatever stage of ME/CFS we live with - through writing and photographs and anything else that makes sense to us.  And hope that someday someone listens.  But until the world turns an ear, an eye or hell, I’ll take a fucking toe, all we can do today is have compassion;  Offer our prayers and hopes and wishes.  And take a deep bow of respect to those clinging onto this life desperately, in absolute agony emotionally, physically and spiritually. Today let’s take a moment of silence to honor severe ME/CFS patients.  Really.  Let’s all take a moment - even just 1 minute - right now and just hold still in silence with our eyes closed like many severe ME/CFS patients live all day everyday - and think of them.  You might not think this makes a difference, but it does, and I am asking you - all of you - please - take a moment for the least lucky amongst us. To all those living in silence and darkness.  Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss. We are here, we are praying for you and we understand.  And we are not going away.  We are right there beside you.  We are all in this together and stand united until the backs of society are turned towards us and the light of science and care and awareness finally shines. Love, Whitney 💙 #MECFS #MECFSAwarenessDay #SevereMECFSAwarenessDay #pwME

“The Highway Knows” acoustic beach version 😎 full video on my YouTube channel 💛 It’s been so much fun playing the new songs on the road! Tonight and tomorrow we’re in Big Sky, MT with Lukas Nelson and Dave Matthews Band at Wildlands Music Festival 🌄

@thephysicsgirl I’m very sad for you, but happy you were able to get to see him before he passed. Many condolences and grateful he raised a person like you.

Two days ago, my dad William “Bill” Cowern passed away somewhat unexpectedly. I flew last minute to Hawaii to be with him and my family for his last days. I feel incredibly lucky to be healthy enough I could finally see him after years of missing him. My dad was joking, and swearing, and crying until his last moments. You asked how he was doing and he replied with a smile, “I’m dyin’ here!” His humor and warmth were a gift he gave until the very end. Some of you might know my dad from my videos talking about getting hit by lightning (twice!) or interrupting our filming to ask me why his PDF was printing small. (Holiday time was always dad tech support time.) But I knew him as a 6’3 gentle giant. He gave the biggest bear hugs as he welcomed anyone and everyone into his home, and into his life. He was curious about people and the universe. He’s the reason I love science, math, qnd scifi. He’s the reason I’m curious about the world. He was a Vietnam war helicopter pilot in the Marines. But much of the island of Kauai (where I grew up) knew him as “The Tree Man.” He was a tree farmer, and true tree lover his whole life. He could talk to you endlessly, and humorously slowly, about trees, vitamin D, Larry Bird, or one of his many other obsessions. He just loved to share. He shared his knowledge, his kindness, his stories, and his warm love with everyone. I will miss him every day. He was the reason I went into science communication. I hope even half of his warmth and greatness lives on through me, my 4 wonderful siblings, and my amazing mom. I love you forever, Dad. 🖤💔🖤

I actually helped make a video! It’s an update on my health with a bit about my good friend from the ME/CFS community @992tobias, and what he’s going through. 💜 youtu.be/vqeIeIcDHD0

This is me—before and after becoming bed bound with Long COVID and ME/CFS. Two years ago, I made videos on YouTube. I ran half-marathons. I traveled. I lived fully. Then my body collapsed. I lost my energy, my independence, and my ability to connect. I lost my life. This illness isn't "just fatigue." It's a devastating, invisible disease that left me in a dark room, unable to sit up, talk, or tolerate light and sound. But slowly—very slowly—I'm starting to improve. Each small step feels like a quiet victory. Please listen. Please learn. Please share. #MECFS #MillionsMissing #MEAwarenessDay #MECFSAwarenessday

Ugh. I overexerted the last two weeks and now I’ve been crashed for a week. This disease, man! It’s so hard to navigate even after years with it. 😣

It’s not that bizarre. Here’s a list of elite athletes who have CONFIRMED #LongCOVID where it’s impacted their careers: - Jonathan Toews, former Chicago Blackhawks captain - @oonagh_cousins, member of GB Olympic rowing team - @jmango_run, elite runner training for Olympics

First birthday in 3 years I’ve been healthy enough to celebrate. 🎊 Now if only I weren’t 3 years older…

This. I exercised a lot. I ate super healthy. (Except for all the chocolate hehe). I made sure to get enough sleep. I kept my mind active. I still became severely disabled.