God grant me the serenity to accept the loss of my entire life, The strength to not have strength, And the wisdom to know when to lay down and hold the fuck still. The ME/CFS Prayer. 💙 Whitney #MECFS #LongCovid

Think back in history at some of the things we consider the greatest human creations or ideas or achievements. There are things just like that stuck in the minds of #MECFS patients all over the world right now that we will never see without a cure. So much trapped beauty. 💔

My Jtube broke and I have to go to the hospital and I’m feeling stressed... It is so hard seeing the real world and feeling it and then coming back to my room and closing all the doors... Read the whole piece on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

When a healthy person's hopes and dreams are crushed, they often fall apart. ME/CFS patient's hopes and dreams are crushed over and over again. Every. Single. Day. 1/2 #SevereMEAwarenessDay #SevereMEDay #MECFS

To all those living in silence and darkness. Today we take a moment of silence to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss… Read the whole piece here: www.whitneydafoe.com/mecfs/?post=... #SevereMECFSAwarenessDay

That is ME/CFS. We live with world champion symptoms with no idea what is causing them or what will happen with those symptoms or what our future holds. We hold onto hope but are often crushed by this harsh, unrelenting illness… Read the whole piece on my blog: www.whitneydafoe.com/mecfs/?post=...

I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING.…And I don’t see anyone even blinking an eye… Read the piece on my blog: www.whitneydafoe.com/mecfs/?post=... #mecfs

Sometimes I feel like I'm in outer space watching earth from far off, floating in a space suit alone. But on better days, I get to come home and be a part of the world and it feels so good to be home.

I've had such a bad week I can't hardly recognize things I wrote a week ago. How can an illness make you so much sicker that you can't recognize yourself and no one even knows why or has any answers? I feel like a ghost of myself. A crappy clone. A shadow. #MECFS #LongCovid

*potential* - noun "able to develop into something in the future when the necessary conditions exist"

The "Big Beautiful Bill" will take away insurance from 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house… #disabled New post on my blog: www.whitneydafoe.com/mecfs/?post=...

I feel so sad and depressed today. Just how they want me to feel. It feels like the soul of my country just fell out from under me. And everything that brings meaning to my life is floating in unknown space and hard to relate to with this new backdrop of (more) cruelty. #MECFS

This 4th of July, if I could fly an American flag, it would be flown upside down…Today should be a disgrace to all Americans…Today President Trump signs into law a bill that will take away healthcare from 17 million Americans… Read the whole piece on my blog: www.whitneydafoe.com/mecfs/?post=...

You know what's way more fun than trying to feel better about yourself by bringing another ME/CFS patient down? Bringing another ME/CFS patient UP 💙 New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

Ever since I saw the trailer for this recent Star Wars movie this scene has come to mind as a symbol of what ME/CFS feels like. #MECFS #LongCovid

I’m tired of being punished for wanting to be alive. It’s the least punishable offense in human history. And we face one of the worst punishments for it in human history. #MECFS #LongCovid

I’ve done most of my "growing up" here in bed. And lately I’ve realized that "growing up" hasn’t been about figuring out the whole universe, but a process of acceptance of myself not “knowing it all”… Read the whole piece on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

I feel like I am in a position where I have to be against the whole world because the whole world is against me…But I don't enjoy that, I didn't choose that. I was put in this position. I love this world. Read the whole piece on my blog: www.whitneydafoe.com/mecfs/?post=...

I'm sick of ME/CFS being compared to a never-ending flu. This ain’t no f*ing flu. I feel like every system in my body is broken and in pieces…But even if you have a very severe flu and are bed bound, the never-ending part is a huge deal… www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

Will ‘reframing my beliefs’ cure the muscle atrophy that #severeME has caused? Will it help me get downstairs in my home again after 2 years? Will it help Karen Gordon & @whitneydafoe.bsky.social? Why ignore 1000s of studies with irrefutable evidence #MECFS is physiological? @tessamunt.bsky.social

There is so much in me begging to get out! I want to work, sweat, toil and exhaust myself working towards dreams and goals and see them become real in front of me! Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more. #MECFSAwarenessMonth

This is ME/CFS.  Unrelenting.  Unforgiving.  Never ending.  You fight and fight for crumbs of life that most muggles throw away.  Crumbs that are not even good enough for the dogs.   #MECFS #MECFSAwarenessDay New post on my blog: www.whitneydafoe.com/mecfs/?post=...

"Mooooom. I don't wanna do my nighttime probiotic routine." (it's kind of elaborate with a Jtube - not just taking pills). "But you have to son." "But whyyyyyyyyy". "Because if you don't your intestines will fall out!" "I don't want my intestines to fall out! I better take my probiotics!" 🤪😆

I feel like a little sailboat on the vast ocean, endlessly thrown about by waves of supplements and medications, pushing my mind and body this way and that like wind on my sails; Trying to keep afloat while the ocean of ME/CFS underneath relentlessly tries to pull me under and swallow me hole.

If “cognitive dissonance” is a term, can we use “cognitive chasm” to refer to the distance between our thoughts and our ability to act on those thoughts?  I can dream of the entire world but I can only touch the very edge of those thoughts.  A chasm between thought and action.  A cognitive chasm.

Chocolate, no joke, makes me feel better than all of my huge box of supplements combined. In the short term. The meds and supplements I’m taking are I’m *sure* helping me more than chocolate in a more long term sense, but chocolate… New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Sometimes I feel like a broken machine that I wake up to everyday and just keep desperately trying to make work.  I'm tired of trying to make myself work and I'm tired of feeling broken.  I want to live in some other dimension where I shine like a being of light. #MECFS #LongCovid

Breaking news: A new lawsuit seeks to challenge the National Institutes of Health’s decisions to abruptly terminate hundreds of grants, totaling more than $2.4 billion, over the past month. scim.ag/3DZnylL

If you feel like crying right now I got you. This album has been with me through the darkest times of 20 years of #MECFS (when I could listen to music). It's devastating, be careful, but if you're there it is there for you. Link to stream the album on every service: album.link/mmcqdfsjfqkgk

I often say this to healthy muggles: I have something like .3% of the energy that you have. Close your eyes and picture all of the things you do in your life. Now imagine removing 99.7% of those things... New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

Does everything have to have AI now? I don’t want AI to make messages to my close friends "funnier", honestly FO that's so disturbing. Everything I use has AI buttons popping up trying to get me to stop thinking and let AI make my own expression "better". Where's the opt out button?

I just finished watching a great series, half binged this morning. it's so stange with severe chronic illness, shows and TV are so huge and vivid and real, those characters become my friends and that world becomes mine and then it's over and I'm left not knowing what to do. #MECFS #LongCovid

I want to announce my new Print Store! www.whitneydafoe.com/store I have been working on putting this store together for 2 years now…The images were all taken before I became severe with ME/CFS in 2013…So it is a sort of parallel dimension time capsule of what could have been with my life

I wish there was a way of simply wishing someone well who has ME/CFS/Long Covid. But no matter how I try to phrase it, it always feels f'd up because I know they are not ok and it feels like I'm not acknowledging that if I hope for it. Even something like "better day" feels f'd #MECFS #LongCovid

Memories tearing like tissue paper, Of all the dreams, I thought might be made real, Tearing into pieces so small, They float away, Into the forever night of ME/CFS… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body.  This I believe is a torture no one but #MECFS patients understand.

I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Will you take the #2025mecfsValentines Day Challenge and reach out to 2 people you love and tell them you love them and why? You will make their day. And if we all do this, it will have a ripple effect through the entire community. New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Psssst! Hey fingernails! Didn’t you get the memo? What are you doing growing so fast like that…We are in total body shut down mode here, you’re not supposed to be doing anything right. [Trigger Warning: This post is a joke] New Post on my Blog: www.whitneydafoe.com/mecfs/?post=...

✏️ My ME/CFS Blog: www.whitneydafoe.com/mecfs ❓What is ME/CFS? www.whitneydafoe.com/mecfs/whatis... 👤 My Story: www.whitneydafoe.com/mecfs/mystory 📄 ME/CFS Resources: www.whitneydafoe.com/mecfs/resour... 🙏 Donate to ME/CFS Research: www.whitneydafoe.com/donate

I’m sorry, I have to rest. I’m exhausted from taking all the things and doing all the things that are supposed to make it so I don’t have to rest. #MECFS #LongCovid

My bloodwork never matches how I feel. Treatments don't work or make me worse. I am constantly dumping precious energy into seeking advice from doctors which leads nowhere. This system has failed us… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

From Ronald W, Davis, PhD. - HOPE FOR 2025 - I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure…. New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

We will all likely feel alone this Christmas. But we can still celebrate the holidays with chronic illness. We can all rejoice and find joy. No matter how sick we are. New post on my blog: www.whitneydafoe.com/mecfs/?post=... #ME/CFS #LongCovid

If we head into the Holidays with no plan and expect to "feel our way" through it safely, we will likely be in for a deathly crash that could be devastating…So we need to make a plan ahead of time…and stick to it… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

A great example of how our health care system fails chronically sick people: My Jtube clogged... A Jtube breaking or clogging is an emergency. You would not even leave a dog stuck in a house with no food or water. New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

"Find something you can hold onto and make an island for yourself" - The Thin Red Line. Find something meaningful and make a world out of it. #MECFS #LongCovid

There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it… #MECFS #LongCovid New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Time just flies by lately. There are markers in my routine each day and every time I do one of them, like brush my teeth in the morning, it feels like I just did it 5 min ago. It doesn't exactly feel like groundhog day, it's more like I’m not cognizant enough to feel time pass. #mecfs

It says a lot about #MECFS and #LongCovid that there could not be an ME/CFS Olympics...Because if we tried to push the physical limits of our bodies like that, all the winners would simply die... New post on my blog: www.whitneydafoe.com/mecfs/?post=...