Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

click here to skip to blog

Whitney Dafoe

2012

I have been struggling with health problems since 2004, when I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems. For the past 4 years (2009-2013) I have been really sick. I started a wedding photography business when I realized I could no longer 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, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. When I couldn't recover in a week in order to shoot the next wedding, I decided I had to give it up which was pretty heartbreaking because of what it represented. That was in 2010. For the last 2 years I have been bedridden much of the time, my health and mobility slowly decreasing. I'm now 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 since I was 21, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. But there is no cure. I will be taking some experimental drugs that have shown promise in limited trials. Let's hope for the best.

The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME), vary from patient to patient. The most fundamental symptom is debilitating fatigue that worsens after physical or mental exhertion. But fatigue is much too mild a word. I like to compare the state I'm in now 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 because you are at a point where your body physically does not have the energy to keep going.

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 tend to have a certain amount of energy reserves (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.

One of the terrible things about ME/CFS is that because of the lack of understanding in the general public, most patients are constantly told to "suck it up", or that "exercise makes other people feel better" 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.

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 more about ME/CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways.

I am now bedridden most of the time. I can't walk much because of circulation and muscle problems in my legs and arms. I don't even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people are much worse than I am. Many people wind up hospitalized unable to move or even speak, sometimes with constant and excruciating pain. Sometimes people's immune systems start over-reacting to everything from food to common chemicals to even light. Many people around the world with ME/CFS are thrown into mental wards and given anti-psychotic meds. There's a story of a girl who was thrown into a swimming pool by a mental ward in an effort to "snap her out of it" by forcing her to "try". She nearly drowned. And surprisingly, it did not improve her symptoms.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis affects 4 million Americans. Twenty-five percent 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 end-stage AIDS or end-stage renal failure. There is no known cause or cure though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. Some people improve with time while others are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.

To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' for years or decades is quite typical. 

Despite the ravages of ME/CFS, it is one of the least funded illnesses.  Multiple Sclerosis is thought to be on average less severe in it's impact on patients' quality of life, and effects half the number of people. Yet it receives 100 million dollars per year from the Government for research while ME/CFS received 15 million last year. HIV receives 28 billion$ per year.  With so little funding, there is no hope for the millions of people suffering from this illness. 

“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

As a nation, we need to invest in ME/CFS. It costs America an estimated 25 billion dollars per year in lost productivity and medical care. 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 effected. Anyone could wind up sick and just drop off the map. And we will likely loose 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 Institute (OMF) www.omf.ngo They are leading the world in funding ME/CFS research right now. They have a science board packed with award winning scientists from around the world including Nobel Laureates and James Watson himself (of Watson and Crick). And this board is directed by the famous Stanford scientist Ronald W Davis 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, or develop experiments that are as complete and thorough as he would like.

OMF_HopeOMF_end-ME:CFS

Please consider giving whatever you can today and if possible make it a monthly contribution, which really helps sustain their research and solidify their future.

Donate

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
ME CFS darkness

June 2013


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

June 2013 - April 2020

Sunk into a pit of severe ME/CFS leaving me unable to eat, drink, speak, tolerate the company of other people, much visual or audio stimulus, and more. Then in April 2020 I started a drug called Abilify

Read More…
that gave me some adrenaline or something that’s giving me a brief time of being able to use my phone a little all of a sudden. Not really a big improvement it’s like a tiny part of my brain improved or changed and everything else stayed the same. I‘m making sure to write and do everything possible without overdoing it too much in case it goes away. I’ve experienced upswings in the past and then gotten worse again so I have no expectations only unending hope.


Show Less
Whitney Dafoe Severe ME CFS

5-8-2020


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.

Read More…
I can’t eat even a tiny crumb of food or drink a drop of water due to a paralyzed 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).

ME CFS Whitney Dafoe J-Tube

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.

ME CFS Whitney Dafoe Bedridden

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. We exist.

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

Whitney's Playlist, by Jennifer Brea

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

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

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 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.

ME CFS Post Covid 19 Long Haulers

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 the newly created Open Medicine Foundation https://www.omf.ngo/ they are determined to #EndMECFS. But they are almost entirely privately funded.

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:

omf.ngo/ways-to-donate/



Show Less
Whitney Dafoe severe ME CFS

8-5-2020


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.

Read More…


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 been sexual in any way in 5 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



Show Less
Whitney Dafoe Severe ME CFS
7-7-2020 (Severe ME/CFS Awareness Day)

I call for an end to the age of suicide from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis. For 40 years we have been suffering without any hope of getting better and without any purpose or cause behind our suffering. This combination is beyond horrific and all those who continue to fight are heroes.


Read More…


Hope gives strength to keep going, and a cause bigger than oneself gives resolve to endure. I'm telling you all that today we have both. Because Superman is here and he has brought an army of superheroes with one goal: to end ME/CFS.

These researchers are some of the best in the world. They are developing technology and looking at us in ways that have never been done before on any patient population.

There is more medical information about me than any person in history. So while we don't have the funding of other diseases, I believe we have the best research team in the world. There is so much to hope for and because of this privately funded research that has very quickly proven ME/CFS to be a very real, physical, chronic illness, our suffering is a shameful blight on NIH, the scientific community, medical community and society as a whole.

You staying alive in the face of this is literally changing the world.

And if that's not enough and the burden is still too heavy, take some of the weight out of your backpack, put it in mine and we'll hike to freedom together.

My friend used to say that sometimes you have to play this song really loud. I agree and I'd like to ask everyone out there to play this song as loud as possible. Let's shake the world with the rhythm of this song for all those lost in silence and darkness.

John Lennon - Imagine



#SevereMEDay #severeMEweek #severeME #MillionsMissing



Show Less

 
Blog.

My 37th Birthday

It’s my 37th birthday tomorrow and for my birthday I would like donations to OMF to help my father’s research. He’s making HUGE headway right now, with some recent game changing discoveries that can’t be talked about publicly yet

Please Stop Calling ME/CFS An "Invisible Illness"

Please Stop Calling ME/CFS An "Invisible Illnes"

i know a lot of people use this word to describe ME/CFS and a few other illnesses. But it is a very bad choice of words. Linguistically it is way too close to saying "non-existent illness".

A Letter to a Friend

I wrote this letter to a friend who I had to stop talking to due to the usual prejudice and lack of understanding about ME/CFS. I did not send it. I just didn’t see the point in putting this out in the world when I wasn’t going to be a part of his life anymore anyways.

Adjusting Expections

I think one important aspect of coping with ME/CFS is lowering our expectations, as sad as that is to do. But a discrepancy between expectations and reality is one of the biggest causes of unhappiness, even among healthy people. Everyone wants a Porche and a big house and gorgeous significant other etc and very rarely does it all come together. (And even when it does healthy people are still unhappy because those things can’t make them happy, happiness is a state of mind). But regardless, living with ME/CFS is a process of lowering the bar of expectations you once had for your life. You have to do it or you’ll go crazy.

The View For ME

For all those living in silence and darkness

Getting Approved for Disability Benefits

I hear about a lot of people who get denied disability benefits for ME/CFS - worse, people getting denied over and over again for years. I got approved on my first application and it was because I went about it in a very specific way which I thought I would share…

Getting a Foot in the Door

One of the things stopping ME/CFS patients from getting fair treatment from all aspects of government and society is that all the systems that should be helping us are set up to start "working" once an illness or condition gets it’s foot in the door…

Awareness Starts With Us

Awareness starts with us. We can no longer sit around waiting for other people to spread awareness about our illness or worse, lying to the people in our lives to avoid discomfort and prejudice while privately complaining about the lack of understanding or awareness on ME/CFS social media (which might feel good but accomplishes nothing).

Staying Below Energy Limits

My number one piece of health advice for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients, more important than any current medication or treatment, is to never exceed your energy limit. But let me explain to be clear.

"How to Stop" by Shabkar

I studied Buddhist philosophy and meditation with a Buddhist monk named Shenyen in a little village called Dharamkot in the mountains above Dharamshala, India where His Holiness the Dalai Lama has made his refugee home. He sent me this ancient poem and I thought I would share it with you to which Shenyen said “yes!” enthusiastically. Written by the nineteenth century Tibetan Saint, Shabkar.

Covid-19 and ME/CFS

All these factors causing such an abysmal response to the pandemic are, I think, a gross manifestation of the very same factors that have kept ME/CFS in the dark for 40 years, neglected by all the same institutions.

Surprise Improvement

I’ve recently experienced what I am very hesitant to call an improvement. I have been stuck in the same pattern and routine, slowly getting worse for so long it felt dangerous to tell anyone about it. I’m sure you have all experienced minor improvements and you don’t know for sure what caused it or even the full nature of it at first and you cautiously start taking advantage of it…

Good Science ME/CFS Grants Being Turned Down by NIH

Superman’s and other good ME/CFS scientists’ brilliant grants are currently being turned down by @NIH. Part of the reason is that the system for grant review is a clusterfuck…What is also true is that NIH is engaged in a duplicitous publicity stunt trying to continue their 40 year campaign of intentionally ignoring ME/CFS and systematically denying grants simply because they relate to ME/CFS while at the same time trying to cultivate a public image of supporting ME/CFS…

ME/CFS Ativan Research

This is me with Fereshteh, one of the superheroes on Team Superman (I’m on Ativan). She’s trying to figure out what Ativan does to my system that causes such a drastic, immediate improvement.