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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=...

submitted 4 days ago • 1 comment

"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!" 🤪😆

submitted 9 days ago • 1 comment

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.

submitted 22 days ago • 3 comments

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.

submitted 26 days ago • 1 comment

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=...

submitted 27 days ago • 1 comment

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

submitted 37 days ago • 4 comments

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

submitted 41 days ago • 33 comments

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

submitted 44 days ago • 1 comment

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

submitted 48 days ago • 0 comments

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?

submitted 56 days ago • 2 comments

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

submitted 57 days ago • 3 comments

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

submitted 65 days ago • 1 comment

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

submitted 66 days ago • 10 comments

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

submitted 71 days ago • 7 comments

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.

submitted 76 days ago • 10 comments

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=...

submitted 86 days ago • 39 comments

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=...

submitted 89 days ago • 2 comments

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=...

submitted 93 days ago • 0 comments

✏️ 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

submitted 105 days ago • 1 comment

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

submitted 105 days ago • 2 comments

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

submitted 114 days ago • 4 comments

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

submitted 119 days ago • 2 comments

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

submitted 141 days ago • 4 comments

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

submitted 145 days ago • 5 comments

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

submitted 150 days ago • 1 comment

"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

submitted 162 days ago • 1 comment

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=...

submitted 167 days ago • 5 comments

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

submitted 171 days ago • 4 comments

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=...

submitted 218 days ago • 3 comments

No one ever sees the world of color that lives inside of me because the black void doesn’t let it out…The only thing anyone ever sees are the bits of dust of a broken down machine… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

submitted 237 days ago • 0 comments

I wish there was a treatment to stop crashes. That alone would make our lives so much better. Like I always say, even a .1% increase in my health would result in a HUGE increase in my QOL. I wouldn’t need a cure to get a life back. We are not asking for miracles just decency.

submitted 268 days ago • 0 comments

Karen Gordon is being held hostage at an NHS hospital with a now 24 hour ultimatum between 2 choices that will both kill her. New post on my blog: whitneydafoe.com/mecfs/?post=... #SaveKaren #NHSmurdersMEpatients

submitted 270 days ago • 0 comments

I got TPN and lived. Maeve Boothby O’Neill was denied TPN and died. #MECFS did not kill Maeve. Neglect, ignorance, prejudice, arrogance and broad systemic failure killed Maeve. #MauveInquest #severemecfsawarenessday New post on my blog: www.whitneydafoe.com/mecfs/?post=...

submitted 279 days ago • 0 comments

The Supreme court ruled that it’s [illegal] to sleep in public spaces…countless cities are sure to follow suit in the USA…This has profound consequences for #MECFS and #LongCovid patients… New post on my blog: www.whitneydafoe.com/mecfs/?post=...

submitted 310 days ago • 0 comments

I haven’t felt the wind on my back in 11 years. But I still feel free…We are not our circumstances. This physical world does not define us nor can it confine us…. New post on my blog: www.whitneydafoe.com/mecfs/?post=... #mecfsawarenessday #mecfs #SevereMECFS #pwME #LongCovid #ChronicIllness

submitted 367 days ago • 0 comments

An anthem for ME/CFS and Long Covid patients. YOU ARE NOT ALONE. songwhip.com/allison-russ... This song is a beautiful testament to our connectedness no matter our physical isolation. 1/2 #mecfsawarenessday

submitted 370 days ago • 1 comment