This message posted to Facebook by Whitney Dafoe.
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 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).
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. 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.
An ex girlfriend named Stephanie Land, who has written a bestselling book, wrote this about me when she found out what was happening.
And an article that is surprisingly accurate and quotes things I wrote in the past about myself and the illness.
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 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 https://www.omf.ngo/ways-to-donate/