Whitney Dafoe
@whitneydafoe.bsky.social
Severe ME/CFS patient and advocate. Writer, photographer, filmmaker. artist, activist, creative. Bedridden since 2013 sick since 2004. Never. Giving. Up. ✊
Pinned
Whitney Dafoe
@whitneydafoe.bsky.social
· Jan 29
✏️ 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
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 can hear Whitney whispering, but I can't make out the words well enough to decipher their meaning or their purpose. I know I am still alive, still yearning, still clawing for life, but all of the things I used to know are hushed, dulled, numbed.
#MECFS #LongCovid #pwme
#MECFS #LongCovid #pwme
November 12, 2025 at 4:57 PM
I can hear Whitney whispering, but I can't make out the words well enough to decipher their meaning or their purpose. I know I am still alive, still yearning, still clawing for life, but all of the things I used to know are hushed, dulled, numbed.
#MECFS #LongCovid #pwme
#MECFS #LongCovid #pwme
The moon outside my window. During certain times of the year it moves down through the trees and I can see it for a fleeting moment between branches before it disappears down over the bushes. It’s the only time I’ve seen the moon since 2013; Through the bars of my window.
1/2
1/2
November 4, 2025 at 3:48 PM
The moon outside my window. During certain times of the year it moves down through the trees and I can see it for a fleeting moment between branches before it disappears down over the bushes. It’s the only time I’ve seen the moon since 2013; Through the bars of my window.
1/2
1/2
I feel like my brain is dispersed in this 2 meter nebulous area outside my head and I can’t access any of my thoughts because they’re too far away.
#MECFS #LongCovid
#MECFS #LongCovid
November 3, 2025 at 4:03 PM
I feel like my brain is dispersed in this 2 meter nebulous area outside my head and I can’t access any of my thoughts because they’re too far away.
#MECFS #LongCovid
#MECFS #LongCovid
Reposted by Whitney Dafoe
CHIPPING AWAY AT THE MYSTERIES OF #ME/CFS
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
By Rachel Tompa
In @stanfordmedicine.bsky.social
@whitneydafoe.bsky.social
@janetdafoe.bsky.social
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
By Rachel Tompa
In @stanfordmedicine.bsky.social
@whitneydafoe.bsky.social
@janetdafoe.bsky.social
Discover how Stanford Medicine is breaking the cycle of chronic diseases with innovative prevention, diagnostic and treatment approaches that empower people to thrive despite their chronic illnesses.
stan.md/46QRjAH
stan.md/46QRjAH
Innovations to help chronically ill people thrive
Stanford Medicine experts are developing innovative approaches to preventing, diagnosing and treating chronic diseases so people can live healthier lives.
stan.md
October 15, 2025 at 3:19 PM
CHIPPING AWAY AT THE MYSTERIES OF #ME/CFS
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
By Rachel Tompa
In @stanfordmedicine.bsky.social
@whitneydafoe.bsky.social
@janetdafoe.bsky.social
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
By Rachel Tompa
In @stanfordmedicine.bsky.social
@whitneydafoe.bsky.social
@janetdafoe.bsky.social
Everyday is a the beginning of a new dream in a way. We go to sleep dreaming of tomorrow and wake up and dare to dream. But when you have ME/CFS, so often day after day is a heartbreaking betrayal of those dreams by our bodies and minds and by the entire world around us. #MECFS #LongCovid
November 1, 2025 at 3:14 PM
Everyday is a the beginning of a new dream in a way. We go to sleep dreaming of tomorrow and wake up and dare to dream. But when you have ME/CFS, so often day after day is a heartbreaking betrayal of those dreams by our bodies and minds and by the entire world around us. #MECFS #LongCovid
The only way to sleep more in the morning is to go back to sleep before you feel the need to pee. Peeing makes you move enough to get hungry, then you eat something and you can't help but check your phone…
1/2
#mecfs #chronicillness #pwME #LongCovid
1/2
#mecfs #chronicillness #pwME #LongCovid
October 17, 2025 at 3:49 PM
The only way to sleep more in the morning is to go back to sleep before you feel the need to pee. Peeing makes you move enough to get hungry, then you eat something and you can't help but check your phone…
1/2
#mecfs #chronicillness #pwME #LongCovid
1/2
#mecfs #chronicillness #pwME #LongCovid
TODAY: Everything is too much to bear. Everything that is good is gone. All that is left is keeping on. (which I will)
#mecfs #chronicillness #pwME #LongCovid
#mecfs #chronicillness #pwME #LongCovid
October 14, 2025 at 5:26 PM
TODAY: Everything is too much to bear. Everything that is good is gone. All that is left is keeping on. (which I will)
#mecfs #chronicillness #pwME #LongCovid
#mecfs #chronicillness #pwME #LongCovid
The *official* ME/CFS Food Pyramid! Your path to better health and a brighter tomorrow, running over green hilltops with the wind in your hair, flying kites with loved ones, everyone laughing, bullshit, bullshit, bullshit 😘😉
💙 Whitney
#mecfs #LongCovid #ChronicIllness
💙 Whitney
#mecfs #LongCovid #ChronicIllness
October 3, 2025 at 5:19 PM
The *official* ME/CFS Food Pyramid! Your path to better health and a brighter tomorrow, running over green hilltops with the wind in your hair, flying kites with loved ones, everyone laughing, bullshit, bullshit, bullshit 😘😉
💙 Whitney
#mecfs #LongCovid #ChronicIllness
💙 Whitney
#mecfs #LongCovid #ChronicIllness
Reposted by Whitney Dafoe
The True Horror Of ME/CFS
The True Horror Of ME/CFS
www.whitneydafoe.com
October 1, 2025 at 10:35 AM
Raise your hand if you woke up feeling like an animal hit by a truck, hyperventilating on the side of the road 🙋
September 23, 2025 at 6:01 PM
Raise your hand if you woke up feeling like an animal hit by a truck, hyperventilating on the side of the road 🙋
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
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
September 22, 2025 at 7:58 PM
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
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. 💔
September 1, 2025 at 1:50 PM
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
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
Remembering What Real Life Is Like
My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all th...
www.whitneydafoe.com
August 27, 2025 at 3:29 PM
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
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
ME/CFS patient's hopes and dreams are crushed over and over again. Every. Single. Day.
1/2
#SevereMEAwarenessDay #SevereMEDay #MECFS
August 11, 2025 at 6:49 PM
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
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
Read the whole piece here:
www.whitneydafoe.com/mecfs/?post=...
#SevereMECFSAwarenessDay
A Moment of Silence for Severe ME/CFS Patients
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 suffe...
www.whitneydafoe.com
August 7, 2025 at 3:28 PM
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
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=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
Living In Unknowns
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 th...
www.whitneydafoe.com
July 30, 2025 at 3:02 PM
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=...
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
Read the piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#mecfs
Too Many Of Us Are Dying
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. Not to mention suf...
www.whitneydafoe.com
July 22, 2025 at 3:19 PM
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
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.
July 16, 2025 at 8:14 PM
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
#MECFS #LongCovid
July 14, 2025 at 6:11 PM
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
#MECFS #LongCovid
*potential* - noun
"able to develop into something in the future when the necessary conditions exist"
"able to develop into something in the future when the necessary conditions exist"
July 8, 2025 at 1:33 PM
*potential* - noun
"able to develop into something in the future when the necessary conditions exist"
"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=...
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
Dear America
The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people, mostly from people on Medicaid. I want to tell you how losing Medi...
www.whitneydafoe.com
July 7, 2025 at 3:30 PM
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=...
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=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
4th of July Disgrace
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 ...
www.whitneydafoe.com
July 5, 2025 at 2:20 PM
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=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
4th of July Disgrace
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 ...
www.whitneydafoe.com
July 4, 2025 at 3:12 PM
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=...
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
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Bringing Each Other UP
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! <3
www.whitneydafoe.com
July 2, 2025 at 2:48 AM
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
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
#MECFS #LongCovid
June 27, 2025 at 4:05 PM
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
#MECFS #LongCovid