Whitney Dafoe

Whitney Dafoe Severe ME/CFS patient and advocate. Photographer, filmmaker, artist, creative. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ We exist.

My name is Whitney Dafoe and I have severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS). I have had symptoms for 15 years but have slowly gotten worse because of a lack of beneficial treatments. For the last six years I have been completely bedridden and unable to speak at all or communicate in any way. I can’t eat even a tiny crumb of food or drink a drop of water due to a paralyze

d stomach (severe gastroparesis). I am fed through a tube that goes directly into my stomach (J—Tube) which feels like being injected with cement everyday. All fluids go through a permanent tube inserted into my chest (PICC line). I can’t do anything while lying in bed either. I’m not sitting here playing video games, texting, or watching movies, etc. I’m unable to do any of those things or anything that used to bring meaning to my life. Even when I’m alone in my room minor movement and activity is difficult for me and any extra stimulation that would bring joy or meaning to a healthy person hurts me. I know my ceiling very well. I can't think clearly due to blood circulation problems to my brain. So I can’t daydream much either. Most of the time I live in a thoughtless, feelingless void that is more horrific than anything I ever could have imagined. I am alone in bed all the time except for brief moments when caregivers come into my room to do basic tasks that keep me alive while I lie completely still (I can’t move a muscle with a person in the room or I get worse). While they are in the room I have to wear earphones playing white noise covered by earmuffs to isolate me from them as much as possible. I have to keep my eyes closed with a towel covering them. And even this contact makes the illness worse. If a caregiver makes a tiny mistake deviating from the everyday routine it can be too much mental stimulation causing me to use more energy in my brain than I’m capable of and the consequences can be devastating to my health making me permanently worse. I also have to keep to a daily routine because otherwise it’s too difficult to avoid doing too much and accidentally exceeding my energy limits which makes me worse. If I ever went way above I could die. I am only able to communicate by taking an anti-seizure drug called Ativan which I’ve discovered temporarily alleviates some of my sensitivity to contact with people and allows me to move with them in the room. But I can only take it about once a month or I will habituate to it and it won’t work anymore. While on Ativan I still can’t talk, write, text or draw. I mime desperately like gestures from hell. It takes hours to communicate these posts and makes me worse but I do it anyways because most people with severe ME/CFS simply disappear into dark rooms never to be seen or heard from again and someone has to tell our story. I lost all my friends when I became housebound due to various degrees of prejudice ranging from constantly questioning the limitations the illness put on me and constantly, subtlety asserting that the illness was in my mind, to directly telling me they thought the illness was in my mind. These were good friends including my best friend- people I thought would be forever in my life. Through rather profound ingenuity while still housebound I later managed to find new friends who simply understood and didn’t make me constantly justify the sacrifices I had to make because of the limitations the illness imposed on me. But when I continued to get worse they left me one by one as they decided they couldn’t handle being close to someone going through something so sad and terrible. So again I was left without any friends. I’m one of the luckiest of ME/CFS patients in that my family has always understood that I was sick and continued to support me. Many people who get severe ME/CFS wind up homeless and die Jane Do’s with no recorded cause of death. I recently got lucky and a fellow ME/CFS patient named Jen Brea who found a cure that works for a small subset of patients was visiting my parents when I took Ativan and I managed to let her into my room and meet her (not easy for me). We have become close friends. It seems to require 3 tiers to have a friend with moderate to severe CFS. Being a compatible person for a friendship, understanding that I’m actually sick, and understanding and having experienced ME/CFS. I still can’t have much contact with her though because of my limitations. Here’s a couple good short essays written by Jen Brea about meeting me. I think she painted a good partial picture of my life now which is more personal than the CNN, Mercury News etc articles written about me (but they are easily google-able). A little background- she made a documentary about ME/CFS called “Unrest" which I’m a major role in and has seen wide acclaim - a good thing to watch if anyone wants to know more about me or ME/CFS. It’s on Netflix, Amazon and various other streaming services. She had moderate ME/CFS at the time and directed most of it via Skype. Quite an impressive feat. Meeting Whitney, by Jennifer Brea
https://medium.com//meeting-whitney-cf179fdad0a9

Whitney's Playlist, by Jennifer Brea
https://medium.com//whitneys-playlist-a8e2bf3eaf81

An ex girlfriend named Stephanie Land, who has written a bestselling book, wrote this about me when she found out what was happening. The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness, by Stephanie Land
https://longreads.com/2016/10/24/the-love-of-a-thousand-muskoxen-grieving-a-love-lost-to-time-and-sickness/

And an article that is surprisingly accurate and quotes things I wrote in the past about myself and the illness. Chronic Fatigue Syndrome Isn't What You Think - It's Much Worse, by Christine Schoenwald
https://www.yourtango.com/2016287352/chronic-fatigue-syndrome-much-worse-than-you-think

Chronic Fatigue Syndrome (as it’s called in the USA) or Myalgic Encephalomyelitis (as it’s called in Europe) is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity. Right now a viral pandemic has spread throughout the world. Every single person in the world is susceptible and at risk of catching it and possibly dying from it. Everyone reading this should know that every single person in the world should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS. And because of many of the same political idiocy and dysfunctional medical/societal systems we are witnessing causing the Coronavirus to be much much worse than it had to be, ME/CFS has been completely neglected for 40 years since it was discovered, with hardly any research money devoted to figuring it out and finding a cure. We are already seeing Coronavirus patients get over the infection but not fully recover and who will likely get rubber stamped with "post viral syndrome" or some such diagnosis which does nothing but get them out the door. What these partially recovered Coronavirus patients really have is ME/CFS. Who knows how many will wind up with ME/CFS but it is something to seriously fear because it means they will never recover. It’s not just the suffering these countless new ME/CFS patients will experience indefinitely but the huge drain on worldwide resources. It is a seriously costly illness due to the incapacitated state it causes. For the last 40 years there’s been pretty insignificant research into ME/CFS due to this unthinkable politically charged stigma throughout all levels of society and an inexplicable lack of funding. But in the last 5 or 6 years things have begun to shift thanks to a new group of renowned scientists from around the world, including many Nobel laureates, deciding to take on the illness. Led by one of the greatest scientific minds in the world - Ronald W Davis - and working out of Stanford University. They are entirely privately funded mostly by the Open Medicine Foundation https://www.omf.ngo/ and determined to . Right now they have launched an ambitious study taking blood from Coronavirus patients and then monitoring their progress so they can see, in real time, the transition from Coronavirus to ME/CFS and gather huge amounts of medical data along the way. This could be a turning point to figuring out how ME/CFS gets triggered and how to stop it before it starts. Every single person in the world should be terrified at the prospect of getting ME/CFS. No one who gets the Coronavirus is safe. But you can do something about it to help in case you do. Donate to the Open Medicine Foundation here https://www.omf.ngo/ways-to-donate/

04/09/2026

In The Hospital

I’ve been in the hospital for the last 10 days in a pretty serious condition.

My last Hickman Port (also called a Central Line - like an IV in my shoulder that can last for years) got infected with a bacteria called Staphylococcus Aureus that causes blood clots, which formed and then spread to the right atrium of my heart!! 😭🤯😞💔💔 And then they spread to my lungs from there as well. 😭 It all feels awful emotionally, they feel like invading foreign bodies, but the clot in my heart really upsets me and feels evil - like my body has been invaded by an alien and I need an exorcism.

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞:
https://www.whitneydafoe.com/mecfs/audio/26-04-06-in-the-hospital-2026-audio.mp3

The only upsides are that the clot in my heart was clearly deposited there from the Hickman Port because the port empties directly into the right atrium and also, if the blood clot moves out of my heart it will go to my lungs, not my brain. Yay? 😒 It’s not good, but it’s better than my brain for sure!

I’m taking a targeted antibiotic for this specific bacterial infection along with heparin (a blood thinner) and hoping the clots will completely disappear with the help of my immune system. And then I’m going to have to get a new Hickman Port and risk it again because I need IV fluids or my body literally just falls apart in a cascading avalanche of MCAS, dysautonomia and nervous system dysfunction.

One pleasant surprise has been how attentive and open the Stanford Hospital has beeen to ME/CFS. The doctors here have talked to my ME/CFS doctor multiple times and actually taken his advice. For example, they listened to him about getting a specific steroid before a contrast CT Scan so the contrast didn’t make me worse as it often does to ME/CFS patients. They actually listened and gave me exactly what my ME/CFS doctor recommended in the exact way he recommended it.

There is still a lot of bureaucracy and things I would like to see improved for patients with ME/CFS, chronic illness and complex illnesses. It’s a big hosptial and it’s designed to work well for something like 80%-90% of patients who come here, but when you are part of that 10% with a chronic illness or complex illness and your needs don’t fit into the system, you have to fight that system to get your needs met. And I think this is something that medicine needs to improve on - making sure the needs of that 10% are met. I would like to see, for one thing, a team devoted to chronic and complex illness (alongside infectious disease, etc) who are well versed in the needs of these patients and could advise patient’s doctor teams on special needs/requirements for these patients.

But my experience overall has been above and beyond my horrifying expectations.

And they just renovated a whole floor of rooms and I was blown away to find how ME/CFS friendly they are! They even have huge windows with 2 levels of light blocking blinds operable by remote and mind blowing views of the sky that have been breathtaking for me after the same view in my room for 15 years. There are only a few small tweaks needed for these rooms to be 100% Severe ME/CFS friendly. Which makes me think "If they can do this by accident, why can’t the rest of the country make ME/CFS friendly hospital rooms and housing and emergency care wards, etc like we all so desperately need - on purpose? If it can be done by accident here, it can be done with intent worldwide even better."

So I have not really worsened from my stay here, which has been a huge surprise and blessing that I was not expecting at all. And something I want all ME/CFS patients to have access to by law so we are able to get the care we need.

A big part of me is really sad about this setback because it is a whole host of medical problems that I did not even have 3 weeks ago, which will now be on top of my previous ME/CFS symptoms I’ve been dealing with.

But that’s life and that’s ME/CFS. It’s a constant up and down, we can never take anything for granted or we quickly find how transient our lives and health are; what we thought was a concrete foundation can be gone in an instant.

This isn’t the follow up video I was planning on making. My last video was about a miraculous improvement in talking again after 12 years not talking, and now I’m in the hospital with a whole new set of health challenges.

But then at the same time it’s exactly the follow up video I was planning on making. Because I’m not planning on showing you a hollywood, maked up, caked up, airbrushed, facetuned version of ME/CFS. My videos and writing will always represent my honest experience and thus hopefully be a reflection of many of your experiences as well.

ME/CFS is not a magic pony ride. We make improvements and then s**t happens and we have setbacks. Anyone who has had ME/CFS for very long has experienced these ups and downs.

But we all hang in there through the lows and unexpected new hardships because we know there will be improvements in the future and moments of love and light that make it all worth it.

Hang on everyone. For the unknown beauty that awaits you that you can’t even see yet.

Love, Whitney ❤️

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PART 2 - At Home

I’m back home from the hospital and want to add one more update to this video mostly so you know that I’m not at the hospital right now. I’ve been home for about 5 weeks, but really not doing well after an abusive discharge that was really a plot twist after the great care I received the whole rest of the time. I’ll be making another update about what happened because it’s a bit shocking. Plot twist! So stay tuned.

I was doing so much better than I expected at the hospital, I was expecting that being in the company of other people (my mother or sister or cousin were always there and i usually couln’t resist talking to them) would make me way worse along with all the nurse visits and other stimulus.

But somehow I didn’t crash there and seemed to handle the huge increase in human contact really well. And I was really hoping I had discovered that I was more capable of human interaction now and would come home feeling better. Or a bunch of adrenaline kicked something off in my system and actually helped me (I know adrenaline hurts many of you but it can help me in specific situations).

But either because of the way they force discharged me in the middle of a crash or because I was in fact just riding on adrenaline the whole time there, I’ve really been doing poorly since. Severe migraine auras that leave me incapacitated and very low mental and physical energy that keep me from doing anything like getting this video posted 😊 and feeling really depressed from spending week after week mostly just laying here listening to really gentle ambient music and staring at the wall unable to act on my thoughts or ideas. You all know that feeling too well.

I then had to return to the hospital for 3 hours for an outpatient exam (no overnight stay) to do a repeat test called a TEE that looks at your heart from inside your throat where it can get a better view. And the blood clot in my heart is completeliy gone now! No idea if it melted or moved to my lungs, but it’s still good news. No more alien! 😆

Stay tuned for more videos about my hospital stay and hopefully I can figure out the post processing with captions in a faster way, so I can share new ideas and experiences!

I’m soldiering on and hoping for better days ahead, just like all of you. There are so mamy dreams to work for and fulfill.

Love Whitney 💙
--
Note #1
Since someone will say it, no i did not get preferential treatment at Stanford Hospital because my father works at Stanford, no one made the connection and we did not ask for it. I was just lucky like the other patients assigned to that new floor.

Note #2
Part 1 at hospital recorded: 1/9/26
Part 2 at hospital recorded: 1/10/26
Part 3 at home recorded: 3/16/26

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Useful Links:

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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04/02/2026

Living just one more day with ME/CFS 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.

I can’t act. I can think of worlds from simple to profound. But I can’t act on making any of it. So I sit and watch i...
03/16/2026

I can’t act. I can think of worlds from simple to profound. But I can’t act on making any of it. So I sit and watch it. And I watch the world pass by without it. And without me. This is the torture of ME/CFS. We are HERE and we are ALIVE but we cannot act on LIFE to LIVE.

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Useful Links:

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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I feel like a war torn soldier, at war with the whole world for the most basic human rights. But I'm a devastatingly fr...
02/24/2026

I feel like a war torn soldier, at war with the whole world for the most basic human rights. But I'm a devastatingly fragile, severely chronically sick person. Why don’t I feel like I’m being taken care of by a kind and loving society that wants me to thrive again?

02/16/2026

2026 Update

It’s very hard for me to write this right now, my mind is lost to me in a cloud of haze, dull fog and strong migraine auras, like my brain is a watterlogged sponge constantly spinning on a wheel. But I know a lot of you are wondering why I’ve disappeared in 2026, and right after a rather exciting video post about talking again.

I know I don’t owe the community an explanation, we all understand that if someone goes a bit quiet, it’s ME/CFS and they’re crashing or something else medical related is going on. (it’s important to establish this with all your friends by the way - that there is no pressure to respond and if your friend doesn’t respond, you’ll always assume it’s because they’re just too sick to). But I always want to try my best to stay connected with you all and contribute something to our collective mindstream when I can.

I had a very serious medical incident happen right after posting my last video about talking again and have been through a lot. I’ve made a video update about it, or several actually, but haven’t been able to get them ready to post. So coming soon!

Im ok now, I’m recovering and my body is going through "growing pains" or maybe more accurately "healing pains" adjusting to new meds and a possibly long healing process.

Lately I’ve been sleeping 12 hours a day and waking up to strong migraine auras along with brain fog and trouble focussing that have left me staring into space or with my eyes half closed listening to ambient music or on better days, Scandanavian slow jazz all day and barely able to tolerate the sound. (But kind of forcing myself to because I refuse to give up on music. It’s one of the few things I got back after Abilify in 2020) And doing nothing, I can’t seem to work on anything or do anything beyond barely taking care of myself (often with a s**t load of will power; Brushing my teeth can feel like climbing a mountain not to mention all the other meds and routines)

This picture here in this post is what I look like most of the time.

I’m ok, we all have these setbacks. But they are so hard. Getting worse sucks. You can quote me on that. 😊 I keep making plans based on my current health and then my health (and thus energy limit and ability to do things) changes and chaos ensues when I can’t meet commitments I’ve made. It’s devastating because those commitments are all stepping stones towards bigger dreams that I want to make happen so badly.

Right now I’m just going to batten down the hatches and weather the strom and hope for the best. That’s often the best we can do, and really it's a miracle if we can achieve that given how the cards seem relentlessly stacked against us at all sides.

You know, one thing I’ve been thinking about is just how F’ing hard/rare it is to get better with ME/CFS and how easy it is to get worse, or way, way worse into terrifying hell realms. There are millions of things I could do right now that would make me worse and which I have to avoid or moderate or handle with extreme restraint, but I don't know of anything that would make me feel better; I know of things that keep me stable and not get worse or get less worse, yes, but improve? I don't know of anything. I work so hard with my routines and meds and supplements just to try to stay afloat.

And that is so hard to live with. Putting so much of our energy into avoiding hell, into trying not not to get worse. Always rowing, but never getting anywhere because the current against us is so strong. Living surrounded by land mines and nothing but desert for miles.

But I remember the trees, I remember the light and I will keep fighting forever to feel it again on my face.

I appreciate all of your well wishes, but please, there are so many of us having such a hard time right now, please send them to someone who is struggling and sicker than me. I’ll be ok, this is not meant as a plea for help, there are others suffering so much and I would want any prayers/wishes/energy sent to them. 💙

Love, Whitney ❤️

==========

Useful Links:

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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Happy Holidays everyone! 💙💚 Yes I sleep with my chocolate 😍Well, in this case it’s a Lindt advent calendar my friend ga...
12/24/2025

Happy Holidays everyone! 💙💚

Yes I sleep with my chocolate 😍

Well, in this case it’s a Lindt advent calendar my friend gave me and it’s been so much fun opening a new delicous chocolate every day this month and thinking of her! It’s honestly a little too sharp to cuddle with but I’m not above sleeping with my chocolate! 😤🤩

🚨 This post may be a very helpful reminder to make a plan for the holidays so you don’t overdo it or at least don’t crash too hard:
https://www.whitneydafoe.com/mecfs/?post=make-a-holiday-plan-and-check-it-twice

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12/18/2025

Talking Again in 2025

I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!

What will 2026 bring❓

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝:
https://www.whitneydafoe.com/mecfs/audio/25-11-13-Talking-Again-in-2025.mp3

Talking has been truly AMAZING. A slow process, it started when I slowly started feeling like I could talk again, but my stress response was still very high about it and it was hard to breach that stress wall and say the first words to someone. I first talked to my best friend, who I am really close with, comfortable with and feel very safe with so my stress levels are lower with her. I practiced talking to her on calls and video calls for about 6 months before talking to anyone else. Then I moved on with a few more close friends. It was hardest with my parents and caregiver because of the incredibly high stress I have been through with them in the past during my sickest years - my stress response seems to still be high with them - sensing danger likely due to a PTSD response mixed with the messed up fight or flight response in ME/CFS. But I am now talking to everyone! It is sooo much easier with my caregiver to just tell her what I need instead of pantomiming every little thing for sometimes a long time until she figures it out. What a relief! And I can have conversations with friends and loved ones!

I just said goodbye to a lifelong friend who is dying and I got to talk to her on the phone and tell her how much she means to me, the impact she has had on my life, how wonderful she is; And then say goodbye. It was profoundly sad, but it meant the world to me that I got to talk to her and say goodbye at all. She is not online and does not text, so it would have been so devastating not to have that last connection with her.

I also recently had a 2 hour meeting with my parents about a new project for Ron’s lab! And I was tired afterwards, but had no PEM from it.

And talking just feels sooooo good and natural and - so human! Relating to people in a much more direct way has been incredible.

I am so happy to be able to tell you all this. 💙

I sometimes stumble a bit talking, like my mouth and tongue just aren’t as coordinated as before, but that is getting better and otherwise it is now easy and very interestingly it feels natural like I never stopped talking. Though I like to think I sound much wiser now 😊

I truly believe that none of the symptoms of ME/CFS are permanent (excluding possible damage from Covid, but keep in mind that Covid research is still very very new. 5 years after HIV was discovered, we knew almost nothing about HIV, and that’s where we are with Covid research today. Some of the current research is surely accurate, but it is true without question that there are more unknowns than knowns at this point, and we should take current research finings with a few grains of salt and certainly not lose hope because of them.

But with regards to the frequent talk and worry on social media of "permanent damage" caused by ME/CFS, throw brain scans at me all you like. The brain can re-wire, adapt, re grow, re purpose, etc and we know next to nothing about the brain. Some very specific simple test about something we know very little about is proof of nothing.

Every single doctor thought I would never get stomach function back, and I am now getting all my calories from eating real food. And no one expected me to start talking again. But here I am.

I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you.

I am making a video of this post for you all to see me talking and to celebrate! You have never heard my voice before and that is totally crazy. But I am excited to change that!

I don't completely know what I will do with video content going forward, but let me know what you would like to see in the comments, I’m definitely going to be adding videos of me - talking - to my current advocacy work. I will probably start with some very raw and honest video diary type things with just one take where I talk spontaneously and honestly about how I’m feeling and aspects of life with ME/CFS. (probably a lot of me grumbling in the morning 😊)

And I would love to make edited videos with multiple cuts and different angles showing aspects of my routine and life, but that requires setting up a tripod and a lot of editing. And it's too much work for my state of health right now. The accounts claimed to be run by "one person" who make a video every 2 days with multiple cuts and angles and perfect color and editing are actually run by film crews, I am a filmaker and know how much work it takes to make videos like this. I say this not to attack these accounts, but because I think most people believe making these videos just takes a couple taps on a phone, but in truth it is a technical and involved process that involves a lot of artistic intent. And I want to explain why I can’t make edited reels like this full of cuts from different angles all the time - I would love to, and I could if I was healthy, (even if not every 2 days) and it would be so great for advoacy and awareness, but I don’t have a film crew and am too sick to do it on my own. And also too sick to tolerate constant film crews.

I also want to add video recordings of me reading my posts in addition to the audio versions so people with different sensitivities can still read, watch or listen to my writing.

Thank you all for all your neverending support and I’m sending all my love to all of you. 💙💙💙

Improving from severe or moderate ME/CFS is possible, and you can come back from even the deepest, darkest hole of hellish ME/CFS. I have experienced it. Now I just need to get my brain back so I can think better and get out of bed!

I started eating again in 2024.
I started talking again in 2025.
What will 2026 bring❓

Sending love to all of you out there ❤️
Whitney

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Useful Links:

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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12/18/2025

Talking Again in 2025

I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!

What will 2026 bring❓

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝:
https://www.whitneydafoe.com/mecfs/audio/25-11-13-Talking-Again-in-2025.mp3

Talking has been truly AMAZING. A slow process, it started when I slowly started feeling like I could talk again, but my stress response was still very high about it and it was hard to breach that stress wall and say the first words to someone. I first talked to my best friend, who I am really close with, comfortable with and feel very safe with so my stress levels are lower with her. I practiced talking to her on calls and video calls for about 6 months before talking to anyone else. Then I moved on with a few more close friends. It was hardest with my parents and caregiver because of the incredibly high stress I have been through with them in the past during my sickest years - my stress response seems to still be high with them - sensing danger likely due to a PTSD response mixed with the messed up fight or flight response in ME/CFS. But I am now talking to everyone! It is sooo much easier with my caregiver to just tell her what I need instead of pantomiming every little thing for sometimes a long time until she figures it out. What a relief! And I can have conversations with friends and loved ones!

I just said goodbye to a lifelong friend who is dying and I got to talk to her on the phone and tell her how much she means to me, the impact she has had on my life, how wonderful she is; And then say goodbye. It was profoundly sad, but it meant the world to me that I got to talk to her and say goodbye at all. She is not online and does not text, so it would have been so devastating not to have that last connection with her.

I also recently had a 2 hour meeting with my parents about a new project for Ron’s lab! And I was tired afterwards, but had no PEM from it.

And talking just feels sooooo good and natural and - so human! Relating to people in a much more direct way has been incredible.

I am so happy to be able to tell you all this. 💙

I sometimes stumble a bit talking, like my mouth and tongue just aren’t as coordinated as before, but that is getting better and otherwise it is now easy and very interestingly it feels natural like I never stopped talking. Though I like to think I sound much wiser now 😊

I truly believe that none of the symptoms of ME/CFS are permanent (excluding possible damage from Covid, but keep in mind that Covid research is still very very new. 5 years after HIV was discovered, we knew almost nothing about HIV, and that’s where we are with Covid research today. Some of the current research is surely accurate, but it is true without question that there are more unknowns than knowns at this point, and we should take current research finings with a few grains of salt and certainly not lose hope because of them.

But with regards to the frequent talk and worry on social media of "permanent damage" caused by ME/CFS, throw brain scans at me all you like. The brain can re-wire, adapt, re grow, re purpose, etc and we know next to nothing about the brain. Some very specific simple test about something we know very little about is proof of nothing.

Every single doctor thought I would never get stomach function back, and I am now getting all my calories from eating real food. And no one expected me to start talking again. But here I am.

I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you.

I am making a video of this post for you all to see me talking and to celebrate! You have never heard my voice before and that is totally crazy. But I am excited to change that!

I don't completely know what I will do with video content going forward, but let me know what you would like to see in the comments, I’m definitely going to be adding videos of me - talking - to my current advocacy work. I will probably start with some very raw and honest video diary type things with just one take where I talk spontaneously and honestly about how I’m feeling and aspects of life with ME/CFS. (probably a lot of me grumbling in the morning 😊)

And I would love to make edited videos with multiple cuts and different angles showing aspects of my routine and life, but that requires setting up a tripod and a lot of editing. And it's too much work for my state of health right now. The accounts claimed to be run by "one person" who make a video every 2 days with multiple cuts and angles and perfect color and editing are actually run by film crews, I am a filmaker and know how much work it takes to make videos like this. I say this not to attack these accounts, but because I think most people believe making these videos just takes a couple taps on a phone, but in truth it is a technical and involved process that involves a lot of artistic intent. And I want to explain why I can’t make edited reels like this full of cuts from different angles all the time - I would love to, and I could if I was healthy, (even if not every 2 days) and it would be so great for advoacy and awareness, but I don’t have a film crew and am too sick to do it on my own. And also too sick to tolerate constant film crews.

I also want to add video recordings of me reading my posts in addition to the audio versions so people with different sensitivities can still read, watch or listen to my writing.

Thank you all for all your neverending support and I’m sending all my love to all of you. 💙💙💙

Improving from severe or moderate ME/CFS is possible, and you can come back from even the deepest, darkest hole of hellish ME/CFS. I have experienced it. Now I just need to get my brain back so I can think better and get out of bed!

I started eating again in 2024.
I started talking again in 2025.
What will 2026 bring❓

Sending love to all of you out there ❤️
Whitney

==========

Useful Links:

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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