Best ways to donate to ME/CFS Research  

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ME/CFS Collaborative Research Center at Stanford

Part of the
Stanford Genome Technology Center
The ME/CFS Collaborative Research Center at Stanford (MECFS CRC) is where the best research into ME/CFS is happening anywhere in the world. Your donation will have the biggest impact on patient's quality of life and go the furthest towards finding a diagnostic, treatments and a cure.
Click here on the ME/CFS collaborative Research Center Website:
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The Open Medicine Foundation (OMF) advocates for ME/CFS awareness and research funding that they allocate to ME/CFS research centers around the world. Ronald W, Davis, the Director the the ME/CFS Collaborative Research Center is the director of the scientific advisory board for OMF. They are a wonderful organization. But if you donate to OMF, only a portion or possibly none of your donated funds will go to the ME/CFS Collaborative Research Center at Stanford, where the best research is happening. However, you can donate to OMF and specify in your donation notes that all the funds go to the ME/CFS Collaborative Research Center at Stanford. They will honor that.

Support My Advocacy Work  

If you enjoy or benefit from my writings, photography and advocacy work please consider becoming a patron or making a contribution to support me continuing this work. It is expensive to produce and requires a great sacrifice on my part. But please do not feel obligated or hurt your ability to sustain yourself financially. My work will always be available to everyone for free.

You can also support me using these services:

Learn more about supporting my work


A lot of you ask or wonder in the comments how I write these pieces or make these photographs in this blog when I’m so severely ill with ME/CFS. The answer is actually pretty simple - sacrifice.

For example, during a recent week I woke up with energy and immediately used it to start working on a post to share on my social media pages. But after writing the post, making photographs for it and getting it scheduled on Facebook and Instagram and Twitter and published on my blog (which all adds up to a lot of work), I was exhausted and wound up laying down still, sleeping uncontrollably for the rest of the day. And these are long 36 to 48 hour days for me. For complicated reasons, my schedule does not go with the sun, but rather with how long it takes to pump enough calories worth of liquid food into my jtube to sustain me, and when I can’t sleep or my stomach gets sensitive and delays my schedule, which happens most days, I wind up with 36 hour or 48 hour days. So in the end, the only thing I was able to do for 3 days was make a social media post during the only time that I had any mental clarity. The rest of the time I couldn’t answer emails, or spend time with my Niece when she was here, or text with my sister, or stay connected with people I care about online, or watch any movies or series, etc. I laid in bed still and mostly slept. This pattern is quite common for me.

So it’s not that I have more energy than other people, it’s that I prioritize writing and photographing and sharing that with all of you above all else. When I have energy, creating advocacy content is the first thing I do and often the last.

I had the idea recently to offer people the option to support this work and the energy I put into it. I don't have much going on outside of this work like a job, or a relationship, or many friends, or much energy to connect with my family. This is what I do with my free time and energy.

After I got a bit better from Abilify, I had the energy to work on more than I can now and more than this ME/CFS advocacy work and I started making my own headphones which is a hobby I started when I became housebound, as it’s something creative I can do sitting down inside that uses little energy. I completed multiple headphone models and started a website hoping to start a company selling them. You can read more about my headphones here:

 rhythmdevils audio

But I am now too sick to make production units to sell, so decided to hire a friend to make them for me, but I now have too little energy to train him and I’m worried about crashing from the training sessions even if I take Ativan to protect me. So it has been delayed for a long time. But i’m telling you because I may have a headphone company up and running at some point. Still, any funds generated from that company would just go towards paying back the significant R&D costs of developing them. And I’m too sick to keep creating new models and possibly too sick to make the company happen at all which breaks my heart as I’ve put so much love into the project and they are truly special, one of a kind headphones. So I may eventually have another job, but right now this work is my job and my purpose and it will always come before anything else.

My ME/CFS advocacy work also costs a lot of money in all the equipment I need to maintain like my computer, backup hard drives, the latest iPhone for the best image quality, a DSLR, a huge amount of camera gear to allow me to make images from bed, etc.

So since this ME/CFS advocacy work is a job for me (one I love) and is expensive, I’m going to let people make contributions to my work if they choose to on a Patreon page I’ve created, or directly with one time or recurring donations in multiple payment formats.

I want to be clear about this with you all though, that it is an option. I know that many or most of you are having a hard time financially, as this illness usually takes away our means of income while at the same time costing a lot of money because insurance doesn’t consider it legitimate. I could not even get a wheelchair from my insurance company covered when i could no longer walk to the kitchen to get food to keep myself fed, and a wheelchair would have allowed me to get to the kitchen freely. I had to buy a used wheelchair myself on Craigslist. This is just one example of course, there are many examples like this from all of us, most of which are cruel, inhumane and devastating. So I understand that it is difficult or impossible to maintain an income and a very expensive life to lead.

So I want to be clear that nothing I create will ever cost you money. I will never charge for anything of substance that I create unless it is published somewhere that does charge money for accessing it. My goal is to help ME/CFS patients, not to make money.

I also understand that donating to ME/CFS research is the most important thing, and I have links to donate to ME/CFS research displayed prominently everywhere i can, always above any link to support me.

But I believe that we need more than just research donations and that my work is important for awareness (which generates research donations) and directly important for patients, caregivers, friends, loved ones and our world wide community as a whole to survive and sustain itself.

So I want to allow people who can give back to me an opportunity to do so in whatever amount makes sense to them financially. I might make some exclusive content on my Patreon site, but it will never be anything that I think would benefit fellow patients or the community, it would only be fun bits and pieces. And if you donate a certain amount that makes it financially possible, I hope to offer an annual print of an image of mine, possibly with a quote or bit of inspiration.

I’m telling you this because I know how the internet works, rumors spread quickly and often seem more valid than the truth. I want you to know the truth here first and avoid you just finding "support my advocacy work" buttons on my blogs or pages and thinking the worst or hearing rumors from others about secret content. There will never be secret content for people who can contribute, only the knowledge that you are supporting me and possibly a gift if the amount you contribute makes a gift financially feasible for me to give back to you and I have the energy to create such a gift on top of my work.

Most importantly I want to be clear that I only want people to give what they can and what feels right to them. If that is nothing, that is fine.

So when you see buttons here or there to support my advocacy work, do not feel pressure, do not feel obligation, just feel an opportunity to give back to me if you enjoy or have benefitted from my works and if you are financially able to give an amount that won’t negatively impact your life.

I want to thank all of you regardless of whether you can give back to me financially or not, because you all give back to me in a huge way. I will always be grateful to this entire community for the sense of purpose you have given my life in this work. I don’t know what I would do if I had no way of helping the ME/CFS community. Even in 2013-2020 before I took Abilify, when I could not make this work because I was too sick to use a phone or computer or camera or even communicate in any way whatsoever, I was planning this work, writing pieces in my head, going over them time and time again so I would not forget them, and imagining what I would create. You all have given me a way to, in some ways, fulfill my dreams of using my creative energy to help people.

So thank you all so much from the bottom of my heart. I love the ME/CFS community, I love all my fellow ME/CFS warriors and the people who help them or sustain them or befriend them or love them. I love this whole community very deeply and would do anything in my power to help all of you.

Love,
Whitney  
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Chronic Fatigue Syndrome/
Myalgic Encephalomyelitis & Long Covid

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What Is ME/CFS?

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS) is a devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my loves, my interests, my passions, my career, my hobbies, everything that brought meaning to my life and all sense of humanity. When an illness takes this much from you, there is hardly anything left and it is a daily struggle to find purpose, meaning and to simply feel human.

ME/CFS is defined by what is called post exertional malaise. This means that ME/CFS patients have a reduced amount of energy compared to healthy people (vastly reduced in severe cases). But most importantly, when an ME/CFS patient pushes themselves over this reduced limit, they don't recover like healthy people after some rest. The illness gets worse for days, months, or often permanently.

One of the terrible things that ME/CFS patients are faced with is profound prejudice and judgement about their inability to be as active as they would like. This happens because of the lack of understanding in the general public about the illness and how unique post exertional malaise is. ME/CFS patients are constantly told to "suck it up", or that "exercise makes other people feel better you need to exercise you are lazy” etc. Which creates a lot of guilt and shame for patients who already desperately want to do more but physically cannot. Not to mention not feeling understood. And it also pushes people to do more than they should, the results of which can be catastrophic. This is why we need more awareness.

There are many more symptoms as well that vary from patient to patient including inability to think clearly, muscle and nerve pain that in severe cases causes pain throughout the body, unrefreshing or very poor sleep, and digestive problems likely caused by nervous system malfunction that controls the digestive system. When the illness is severe patients physically do not have enough energy for their brains to function to process the world around them and they have to isolate themselves from many aspects of the world to avoid getting worse. These patients often experience sensitivity to interaction with people, or the simple company of other people, sensitivity to colors, sounds, light, noise and any other stimulus that forces the mind to use more energy than a severe ME/CFS patient has (and many more symptoms depending on the patient). Many severe ME/CFS patients live completely alone in dark rooms with eye masks and ear muffs and all text, colors and sounds around them reduced as much as possible to minimize mental stimulation. Some patients live like this for years or decades, completely isolated from the entire world and everything in it, left with nothing but their thoughts and haunted by the memory of being alive. Read more about the experience of living with extremely severe ME/CFS in my published manuscript here

ME/CFS affects 4 million Americans, though this number is drastically rising with an estimated 16 million Long Covid patients, which all experts agree is ME/CFS caused by having the Covid viral infection. Although Long Covid has received funding, it has been separated from ME/CFS by NIH and the funds sadly given to researchers unfamiliar with ME/CFS. This has resulted in a real lack of progress since decades of ME/CFS research has been ignored and Long Covid researchers have been reinventing the wheel with basic understanding about ME/CFS that is already known.

Twenty-five percent of ME/CFS patients are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to patients with end-stage AIDS or end-stage renal failure shortly before death, except ME/CFS goes on for never ending decades. There is no known cause or cure.

Some patients slowly improve with time but commonly relapse back to where they were before or worse. However the majority of patients remain sick, and in the worst cases, bed-bound for decades. Very few recover. It is estimated that 4% of those with severe ME/CFS have any type of recovery. To die of this illness is atypical; To hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.

For decades ME/CFS patients have faced more prejudice than any other chronic illness and their symptoms have been seen as psychosomatic or nothing but “laziness”. When people hear of this disease they often say things like, “I would love to lay around all day” to the shock of anyone who has experienced the real horrifying symptoms of the disease. It is one thing to choose to “lay around” or a few hours and then resume activity and a normal life. It is quite another to be forced to lay still while everything that once brought meaning to your life is taken away from you and you face symptoms throughout your body and mind that cause unparalleled suffering.

ME/CFS has been completely ignored by every facet of society from the worldwide population, to the medical community to the scientific community, to every government worldwide. Most people don’t even know it exists which makes private research funding very difficult and allows prejudicial views to spread. In the United States, NIH has systematically ignored ME/CFS as if they do not want to find a cure or beneficial treatments. They have kept funding so low that no one can get much, if any, research done, and they systematically deny grants to even world famous researchers for reasons that do not make sense.(see my blog posts "Good Science ME/CFS Grants Being Turned Down By NIH" for more information about this and "Defying NIH in 2024" for more information about what NIH has done to derail ME/CFS research and make finding a cure all but impossible for decades.) Because of this complete lack of understanding, wild ideas and theories run rampant. When the medical community is confronted with an ME/CFS patient - they know nothing real about the illness and have no idea what to do. It is a bit like a rorschach test - will they see a sick patient with a serious disease, or someone with a mental illness, or someone who is completely crazy and needs psychiatric intervention? Because of this, patients have been forced into psych wards all around the world for having “mental disorders” and subjected to extreme abuse that often leads to death. One patient was thrown into a swimming pool to force her to “get over it”. Unsurprisingly, she almost drowned and her illness worsened permanently. (See my post “The True Horror of ME/CFS” to read more about the devastating, harsh reality of ME/CFS)

ME/CFS to this day continues to face extreme prejudice and is still, in 2024, completely ignored. Since governments around the world do not hardly fund ME/CFS research, donations for research come almost entirely from patients, who are unable to work and are burdened with huge medical bills not covered by insurance since the disease is not recognized as “legitimate” by insurance companies. I could not get a wheelchair covered by insurance when I physically could not walk to the kitchen to get food, I cannot get important medications covered, I cannot even get saline covered by insurance and my stomach is paralyzed meaning I cannot drink any water whatsoever, I get all fluids through a tube called a PICC line that goes into a vein in my chest. So without saline I would die of dehydration in 3 days. Yet my family is forced to pay $14 per bag for saline ourselves and I need 3-4 bags per day. These are just a few examples, my family pays for innumerable treatments and necessities out of pocket and every patient has stories like this.

ME/CFS is one of the least funded illnesses even among benign illnesses that do not have a serious affect on quality of life. But Serious illnesses like Multiple Sclerosis receive exponentially more research funding. [See the graph below comparing funding to other illnesses]. Multiple Sclerosis is thought to be on average less severe in its impact on patients' quality of life compared to ME/CFS, and affects half the number of people. Yet it receives $100 million per year from the government for research while ME/CFS received $11 million last year. With $100 million per year in funding, ME/CFS would likely have been cured years ago. HIV receives $28 billion per year and because of this, there are excellent treatments and HIV patients lead relatively normal lives (when they live in places where they have access to these treatments). With so little funding, there is no hope for the millions of people suffering from ME/CFS.

“My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families.
I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million [to 4 million] people in the United States alone, has had a small fraction of the research dollars directed towards it.” —Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

Despite the lack funding, many brilliant researchers have taken on the challenge of finding a cure for ME/CFS over the last decade and research has progressed (though much more slowly than if they had proper research - Ronald W Davis, PhD, has found what is probably a diagnostic test called the Nano Needle, but NIH won’t fund it for dubious unknown reasons). ME/CFS researchers have shown without question that ME/CFS is a real, severe, multi-systemic disease. They have found unique abnormalities in the immune system (e.g., inactive NK cells, malfunctioning T cells, alterations in the innate immune system, a plethora of autoantibodies), in mitochondria (e.g., low energy (ATP) production, fragmentation), in the circulation system (e.g., low blood flow and blood volume, heart valve preload failure, lack of deformability of red blood cells, microclotting) , in the brain (e.g., inflammation, elevated temperature, high lactate, abnormal MRI and PET scans), in physical response to exertion (e.g., inability to perform similar to patients with other severe diseases a day or two after exercise, worsening symptoms after physical, cognitive or emotional exertion), in the G.I. system (e.g., altered, less diverse microbiome, low motility, presence of enterovirus, eating problems, pain), in sleep (e.g., non-refreshing sleep, disruptions of diurnal rhythm, other sleep disturbances), and autopsy findings that report dorsal root ganglionitis - a type of inflammation of the spinal cord.

As a nation, we need to invest in ME/CFS. Ignoring it as we have been doing costs America an estimated 25 billion dollars per year in lost productivity and medical care which is only going to continue to grow exponentially as people around the world are infected and reinfected with Covid and eventually wind up with Long Covid or in other words ME/CFS. ME/CFS destroys millions of American lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are affected. Anyone could wind up sick and just drop off the map. And we will likely lose everything that person would have become or contributed to the world.

As a nation, we need to invest in ME/CFS.

If you are able, please consider making a donation to the Open Medicine Foundation (OMF) www.omf.ngo

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They are leading the world in funding ME/CFS research right now. They have a science board full of award winning scientists from around the world including Nobel Laureates. And this board is directed by the famous Stanford scientist Ronald W Davis, PhD, who has spent his life tackling "unsolvable" problems through the invention of new technology and new approaches to thinking about these problems. He has won many awards for his work including being named one of the greatest living inventors by The Atlantic. But Ron doesn't have the funding he needs to pursue all of his ideas, to develop experiments that are as complete and thorough as he would like, and to hire a bigger group of multi-disciplinary experts to pursue treatments and a cure as fast as possible.

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Please consider giving whatever you can today and if possible make it a monthly donation, which helps sustain research and solidify their future.
You have the power to help millions of profoundly suffering people all around the world just waiting to get their lives and loves back. Thank you.

-Whitney Dafoe, severe ME/CFS patient

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My Story


I grew up healthy. I got colds sometimes like normal people, but that’s about it. I exercised, I played soccer and basketball and baseball and ran cross country. I worked diligently on my creative passions like photography and film and artwork in general. When I was a child, I built my own creations with Legos for hours and hours and got completely lost in it. I have always been inspired and incredibly motivated to work towards my dreams. And I have never experienced any sort of connection between my mood or state of mind and my drive to create as an artist - this drive is there whether I’m having a good day or a bad day, a good mood or a bad mood.

I had a blessed, magical childhood filled with creativity and a very physically strong adolescence, still filled with creativity, awe and wonder at the world.

However, my health took a sudden drastic shift in 2004, when I was 21 after traveling abroad and I have been struggling with mild to extremely severe health problems ever since.

In college I dreamed of becoming a war or documentary photographer in the future, traveling the world telling important stories that needed awareness.

I have travelled alone extensively since I was 14, both throughout the United States and abroad, but ever since I was 21, every time I traveled my health seemed to plummet. I had vertigo and severe lightheadedness that worsened with exercise from 2004-2007 that often left me sitting alone in my dorm room at Bennington College with my head against the wall to try to reinforce a lack of movement and ease the uncomfortable feeling. But I have always been inspired and dedicated and never imagined I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do, thinking that it would pass or that doctors would figure out what was causing my health problems. I drove through every state West of the Mississippi River photographing for my "Under The American Map" series with this lightheadedness. I refused to let it stop me. My trip to India in 2007 was the last straw it seems. From 2009-2013 I became really sick, with digestive issues, less energy, need for more rest, etc.

I started a wedding photography business in 2009 when I realized I no longer had the energy to hold a full time job, thinking that it was a blessing in disguise because once I got my health back I would be making money doing something I loved. After a year things were looking really good business wise, I was going to start making a good living off of my new business and it was so exciting and so much fun. But it took me longer and longer to recover from the intense physical requirements of shooting a wedding. I was exhausted to the point where most people would say they were too sick to keep going by the time I loaded my gear into the car, and the rest of the whole day running around photographing often for 16+ hours straight came from will power alone. When I couldn't recover in a week after one wedding in order to shoot the next wedding, I decided I had to give it up which was devastating especially given what it represented - losing a career I had built up to since my creative play as a child. That was in 2010. From 2010-2012 I was bedridden much of the time, my health and mobility slowly decreasing. In 2012 I was forced to rest in bed most of the day, saving up energy for little bits of projects like writing this, or working on some photographs for a half hour or an hour on a good day.

After seeing countless doctors and specialists in every area of medicine I could find for 8 years starting in 2004 when I was 21, having blood drawn over and over again, literally hundreds of tests done and constantly being told there was “nothing wrong with me”, I was finally diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. But I was devastated to lean that there is no cure.

The Symptoms of Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis (ME/CFS), vary from patient to patient. The most fundamental symptom is debilitating fatigue that worsens after physical or mental exertion. But fatigue is much too mild a word. I liked to compare the state I was in in 2012 to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many ME/CFS patients feel every day. "Total body shut down" would be a better phrase than "fatigue" because you are at a point where your body physically does not have the energy to keep going. If our body's ran on batteries, mine was never able to charge past 5%.

Patients with ME/CFS experience something that is often called Post Exertional Malaise.. Most people, including people afflicted with many other illnesses improve with exercise. Even after an intense workout or a long day of work, they recover after a night's rest. Patients with ME/CFS experience a severe worsening of physical symptoms during or after exercise. We have a limited amount of energy (far less than healthy people) often called an "energy envelope". If we push ourselves to keep going past this, the symptoms worsen significantly and it often takes days or weeks to return to where we were before. Some patients are permanently worsened. No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something. There are some new studies examining this unique symptom and they are finding that patients with ME/CFS react differently to exercise. We will see much more on this in the near future and hopefully see a diagnostic test emerge from this research soon. See my post called "Saying Below Energy Limits" and "Sensing Your Energy Limits" for more information about pacing and the energy limits imposed by ME/CFS.

I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known I had ME/CFS and the consequences of over exertion, I would not be nearly as sick as I am today. There are a million things I would not have pushed myself to do, like ride my bike to college in San Francisco, which made me feel horrible, but I wanted to be riding my bike so I pushed myself to do it. This is why awareness of ME/CFS and the symptoms and dangers of over exertion are so important to spread to the general public, especially with millions of new ME/CFS patients from Long Covid (Long Covid when it includes Post Exertional Malaise (PEM) as a symptom is ME/CFS caused by Covid). If they know that they have ME/CFS and how to manage it, they can not only prevent themselves from getting much much worse, but possibly fully recover if they are very careful not to overexert themselves right after developing symptoms.

In 2013 I was bedridden most of the time. I couldn’t walk much because of circulation and muscle problems in my legs and arms. I didn’t even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people were much worse than I was then, which I later experienced to a devastating extent myself!

June 2013 : Getting Much Worse

ME CFS darkness
Really sick. I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in 6 months…

[These are the exact words from an update I wrote on this website in June 2013 and it was as much as I was able to type, and the last time I wrote anything until 2020]

June 2013 - April 2020 : Living Hell

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During these 7 years from 2013-2020 I experienced a living hell.

You can read a detailed account of my experience living with Extremely Severe ME/CFS during these 7 years in my published manuscript here.

Sunk into a pit of one of the most severe cases of ME/CFS ever known worldwide, My stomach slowly became completely paralyzed in 2013 as I slowly starved to death, finally getting a Jtube inserted into my stomach which saved my life. (A Jtube is a feeding tube inserted into the stomach that delivers liquid food to the intestines, bypassing the stomach.). Just before getting the Jtube inserted I weighed 115 pounds and I am 6'-4". And I was only able to eat 2 tiny sips of maple syrup everyday just to keep my brain from completely shutting down.

My stomach continued getting worse from trying to take sublingual medications, thinking they wouldn't hurt my stomach, I would lie in bed on my stomach, face down when I took the sublingual, so that nothing went down my throat. But one day, I made a mistake and a bit got down and that was the last time I was able to put anything - food or water in my mouth. I currently cannot eat even a tiny crumb of food or put a drop of water in my mouth or it hurts my stomach which would make it worse and I could loose the ability to accept food from the jtube which would mean I would not be able to get nutrition of any kind and once again starve to death. This is a very stressful situation to live in every day for what is now 11 years.

ME CFS Whitney Dafoe J-Tube

I also lost the ability to speak in 2013 when I became bedridden. I still have not spoken a word to this day.

I couldn't do anything while lying in bed during this period. I could not even touch a phone or computer, much less use them. There were periods when I could write notes by hand, but most of the time I could not write or read or communicate in any way. I certainly could do any of the creative work or go on the adventures that used to bring so much meaning to my life. Even when I was alone in my room minor movement and activity was difficult for me and any extra stimulation that would bring joy or meaning to a healthy person hurt me. I knew my ceiling very well.

I couldn't think clearly due to blood circulation problems to my brain. So I couldn't daydream much either. Most of the time I lived in a thoughtless, feelingless void that was more horrific than anything I ever could have imagined.

I was alone in bed, in my room, all the time except for brief moments when caregivers came into my room to do basic tasks that kept me alive while I lied completely still (I couldn't move a muscle with a person in the room or I would crash and get worse). While they were in the room I had to wear earphones playing white noise covered by earmuffs to isolate me from them as much as possible. I had to keep my eyes closed with a towel covering them. And even this contact made the illness worse. If a caregiver made a tiny mistake deviating from the everyday routine it could be too much mental stimulation causing my brain to use more energy than it had and the consequences could be devastating to my health making me permanently worse.

ME CFS Whitney Dafoe Bedridden

I lost the ability to communicate in person in 2013 and came up with various ways of getting basic messages to my caregivers liken putting out prewritten cards saying basic things that I could put in strategic places (like "more/less", "yes/no", "don't put this here/put this here", etc), or when I got too sick to tolerate written words on cards, I used paper towels folded into arrows pointed at things I needed help with, which often took my caregivers hours to figure out and made me much worse. I could not tolerate much visual or audio stimulus- I could only look out my window for about 5 seconds before I crashed and the sound of a neighbor talking caused a crash. Anyone talking in my room made me crash and these crashes made me much worse. I was completely alone with no communication with the outside world or other human beings for 7 years.

I also had to keep to a daily routine because otherwise it was too difficult to avoid doing too much and accidentally exceeding my energy limits which made me worse. If I ever went way above these limits I could die. So my life lacked any spontaneity as I had to do as close as possible to the same things every day, in the same room, which was temperature controlled and air filtered so I was very disconnected from the world, the seasons, even simple things like sunlight or the smell of the air or the sound of the wind in the trees.

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You can read more about my experience living with Extremely Severe ME/CFS during these 7 years in my published manuscript here.

Every single person in the world should be terrified at the prospect of getting ME/CFS. Anyone could wind up with ME/CFS and not only lose their entire lives, but experience what I have described above.

But you can do something about it today. Donate to ME/CFS research here:

8-5-2020 : Extremely Severe ME/CFS

Whitney Dafoe severe ME CFS

[Written in 2020]

I haven’t left my room for 7 years except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time as well as Fentanyl during the procedure.

I haven’t been touched by another human being without it hurting me in 7 years.

I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years.

I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes.

I haven’t taken a shower in 7 years. I clean the most needed parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me.

I haven’t cut my own toe nails in 7 years.

I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life)

I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed.

I haven’t made love to a woman in 9 years.

I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk. Which puts my life at risk.

I haven’t seen a dentist in 9 years.

I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible.

I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion, creation. Only endless numbered days.

I fight to survive for all those living and dying in silence and darkness.

#severeMEweek #severeME #MillionsMissing

2020-2023 : Small Improvement

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In April 2020 I started a drug called Abilify which at high doses is an anti-psychotic drug (30mg) but at very low doses (2mg) slowly increased from .5mg to 2mg over the course of 6 months was found to help some ME/CFS patients in a new study. I was very luckily one of those ME/CFS patients that it helped and it slowly started making me a bit better. One day I realized I could listen to music again and it was absolute bliss; Waves of bliss running through my whole body. It was a slow path to getting about 2% better but that 2% improved my quality of life by probably 2000%. I soon could have my caregiver come Into my room without earmuffs and pantomime what I needed with them. All of my sensitivities decreased. I got to start working on creative projects again. I discovered a love for writing and was able to write without Ativan and start a Facebook page and a blog here on this website, and then continue my photography project documenting my life with ME/CFS and start an instagram page posting those images. I won many awards for this project, which you can see here , though this project is vast, spanning from 2010 to present, and only a small number of images were allowed to be entered into these awards. After improving from Abilify I was also able to chat with some people I met on instagram and make some new friends, which was a big deal after being so isolated within myself for so long.

This improvement peaked in about 2022 and then I sadly started getting worse again, as the drug often stops working for ME/CFS patients. I slowly have been able to do less and less over the last year, but try my best to fill my life with meaning with the energy I do have.

8-2022 : "Living Death / Living Life"

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Cort Johnson Wrote an article about my photography work, all my advocacy work and where I am in general now.

Click here to read it
See the awards I have won

07/25/2023 : Back In Chains; My Health Plummets

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I suddenly and unexpectedly got much worse for unknown reasons and I am unable to type unless medicated. I’m writing this now on Ativan again like in 2020.

I am honestly suffering so much. I lost everything for 7 long years, stuck in a black hole of nothingness. And then in 2020 Abilify allowed me to carve out a little bit of light into that black hole and create a tiny life that brought me so much meaning and purpose and moments of joy and love and life. And that has all been taken back again, lost to the void.

Being unable to communicate again has put me into a state of almost constant panic and stress that is impossible to describe unless you have known it. Even touching my phone often times would make me crash.

I feel so repressed, it's as if a shatterproof, bulletproof glass box has been secured around my body, but it’s not even big enough to fit my whole body. It is much smaller than that. It’s smaller than even my whole mind to fit inside, it’s the size of a tiny corner of my mind and I’m banging on the glass walls screaming to get out. Screams that cannot be heard or felt by anyone.

Some things have remained better though. I am still able to have my caregiver come into my room and move while she is in here and pantomime to her.

I spend my days dreaming of all the things I want to make and do, and. Then I get meds and my sensitivity is calmed down and I can type and I feel. Immense pressure to do so much from a long list in my head from things to buy to working on my website to writing posts and trying to fundraise for my 40th Birthday Fundraiser. The ups and downs of this are torturous, I long with all my being for consistent ability to work on things again.

I stopped Abilify when I got worse again, and stayed off of it for 3 months. I then started at a low dose and slowly. Increased it to 2mg again which I have been on for a week or so. I hope and pray that Abilify helps make me better again. So I can work on things, but more so because I want to be contributing to the ME/CFS community and raising awareness, understanding, hope, and funding .

I have very little control over this, however. All I can do is be as healthy as possible with carefully chosen medications and supplements, try to pace myself and wait and see.

I love you all.
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