Hi, welcome to my 2021 *FindACureForMEcfs birthday fundraiser. Last year, we raised over $36,000 for ME/CFS research. Will you join me in raising funds for the Open Medicine Foundation and help me raise awareness for ME/CFS this year?
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 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. But most importaintly, 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, often permanently. There are many more symptoms as well including inability to think clearly, muscle and nerve pain, unrejuvinating or very poor sleep, sensitivity to colors, sounds, light, noise and other stimulus that forces the mind to use more energy than a severe ME/CFS patient has, digestive problems likely caused by nervous system malfunction that controls the stomach muscles. And many more.
ME/CFS 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 its impact on patients' quality of life, and affects 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.
Here is a link to a graphic showing the funding disparity compared to other illnesses
“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 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) via this fundraiser for my birthday. They are leading the world in ME/CFS research right now. They have a science board packed with award winning scientists from around the world including Nobel Lauriates 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 was named one of the world's greatest living inventors by The Atlantic.
Last year's fundraiser here allowed Ron's lab to purchae a HIgh Pressure Liquid Chromatography Instrument. He and everybody in the lab are really excited and grateful to get this new instrument because it allows them to do a large number of new experiments. There is a plaque on this instrument honoring all of your donations that made the purchase possible.
This year, Ron needs needs a high resolution fluorescent microscope that will allow them to get good visualization of human immune cells for a large variety of their experiments.
Please consider donating to make it possible for Ron's lab to purchae this badly needed instrument for breakthrough new reseach.
Click here to read more about ME/CFS on my website
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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 gotten worse and have been completely bedridden and unable to speak 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 (called a J—Tube) which feels like being injected with cement everyday. All fluids go through a permanent tube inserted into my chest (PICC line).
From 2013 to 2020 I coudn't do anything while lying in bed. I wasn't sitting here playing video games, texting, or watching movies, etc. I was 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 was difficult for me and any extra stimulation that would bring joy or meaning to a healthy person hurt me.
I couldn't think clearly due to blood circulation problems to my brain. So I couldn't daydream much. Most of the time I lived in a thoughtless, feelingless void that is more horrific than anything I ever could have imagined.
i have recently seen some minor improement from a new experimental drug that I started in 2020. it is no cure, but i improved enough to move in bed, use a phone and computer, type, and work on some simple low energy hobbies in bed. It also allowed me to write this to communicate what severe ME/CFS is like.
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 accidentally doing too much and exceeding my energy limits which makes me worse. If I ever went way above my energy limits I could die. So everyday is the same for me with very litte spontinaeitiy or sense of iife or freedom.
Pleaese consier donating to Ronald W. Davis's reseach through The Open Medicne Foundation to helps stop the suffering of millions and end ME/CFS
