Hi, welcome to my 2023 *FindACureForMEcfs birthday fundraiser. In the last three years’ fundraisers, we raised $114,000 total for Ronald W. Davis, PhD's ME/CFS research. In the past I wrote all this myself. I have gotten much worse in the last few months, so I have had help in writing and posting this year's fundraiser. The need is more urgent than ever! Will you join me in raising funds for the Open Medicine Foundation for Ron's research this year?
Ron and his colleagues are very excited at the prospect of being able to purchase new instruments that are greatly needed.
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 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 was named one of the world's greatest living inventors by The Atlantic.
100% of your donation to this fundraiser will go to Ronald W. Davis's research.
This year, 2023, Ron needs to buy a second detector, called a Coulometric Array Detector, that will enable him to measure other compounds in addition to those measured by the first detector we raised the money for in 2021, e.g., total biopterin, a component of BH4 and BH2. This will help in the understanding of all the components in the BH4 pathway in patients. That may lead to a treatment. The detector is very adaptable, and Mike Jensen, the research engineer who will use it, is very talented at developing new assays.
In addition, they also urgently need a specialized blood analyzer. One of their projects is studying neutrophils, which leave the bloodstream and then return. They bring with them information about what they’ve been exposed to. They even get into the brain. Thus, this new blood analyzer will enable the lab to discover things that are happening outside the bloodstream. Also, neutrophils move around, which requires ATP. Since patients’ ATP production is compromised, analyzing the movement of neutrophils may become a simple, fast diagnostic test.
UPDATE 12/23:
We reached our first goal of $52,000 for Ron’s research! He will now be able to buy a Coulometric Array Detector and a Specialized Blood Analyzer that will both enable further and faster research! Thank you to everyone who has donated, you are personally helping millions of suffering people and making a cure possible.
I’m going to raise our goal to $90,000 now because Ron’s lab also really needs to purchase another High Pressure Liquid Chromatography (HPLC) instrument because they are using it so much it will delay their work unless they have a second one.
The last thing we want is Ronald W, Davis, PhD and his team of brilliant researchers delayed! Let’s tighten our belts one more notch and give whatever we can today to make it possible for Ron’s lab to work as quickly as possible to END ME/CFS for good.
Imagine a world where no one can get ME/CFS! A world where no one looses their entire lives and loves and goals and dreams and careers and marriages and friends and families and often their very lives! This is possible and it will happen sooner with a second HPLC.
Thank you with all of my heart.
❤️ Whitney
Please consider donating to make it possible for Ron's lab to purchase these badly needed instruments for breakthrough new research.
100% of your donation to this fundraiser will go to Ronald W. Davis's research.
In 2022, my birthday fundraiser enabled Ron’s lab to purchase a wide field fluorescent microscope to visualize cells in the blood to get a more accurate count and characterization of them.
The lab was very excited to get this because their old microscope was not working well. All of the projects in Ron’s lab are benefitting from this wonderful microscope, including the work on the itaconate shunt.
In 2021, my birthday fundraiser allowed Ron’s lab to purchase an electrochemical detector. Along with the HPLC, they are using it to measure BH4, folate, and other metabolites in the arginine pathway. No other laboratory has ever measured these things in MECFS patients. These molecules have been implicated in MECFS for a long time but they’re hard to measure and there’s no commercial assay so no one has studied them in ME/CFS patients. They are involved in the production of some of the hormones like dopamine and the production of nitric oxide, which is involved in blood flow. All these things may be involved in why the itaconate shunt does not turn off which could be the cause of ME/CFS.
2020's fundraiser here allowed Ron's lab to purchase a HIgh Pressure Liquid Chromatography Instrument (HPLC). Ron and everybody in the lab were really excited and grateful to get this new instrument because it has allowed them to do a large number of new experiments. They are now able to measure BH4 levels in patients’ blood, as well as lots of blood metabolites inexpensively and quickly. There is a plaque on this instrument honoring all of your donations that made the purchase possible. 
What Is ME/CFS?
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS) 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 (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. 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 process . When the illness is severe patients usually experience sensitivity to interaction with, 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. 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. Some patients live like this for years or decades. And there are many more symptoms depending on the patient.
ME/CFS affects 4 million Americans (a number which is drastically rising with Long Covid which all experts agree is a form of ME/CFS, with an estimated 16 million more sufferers. Although Long Covid has received funding, Long Covid researchers have not consulted much with what is already known about ME/CFS, which is unconscionable).
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 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 are sick, and in the worst cases, bed-bound for decades and 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 unbelievable prejudice and their symptoms have been seen as psychosomatic or nothing but “laziness”. When people hear of this disease they often say, “I would love to lay around all day” to the shock of anyone who has experienced the real horrifying symptoms of the disease. 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. ME/CFS to this day faces extreme prejudice from the medical and scientific communities, almost all of which ignore it completely, and from society as a whole, most of whom know nothing about it and don’t usually do anything to help even when they do. 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”.
However, research over the last decade has progressed and shown without question that ME/CFS is a real, severe, multi-systemic disease. Researchers 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.
Despite the ravages of ME/CFS, it is one of the least funded illnesses, again facing prejudice from NIH and all facets of government. 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 11 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. Ignoring it as we have been doing 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 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 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 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.
Please consider giving whatever you can today. 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
100% of your donation to this fundraiser will go to Ronald W. Davis's research.
My Story
My name is Whitney Dafoe and I have severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS). I have had symptoms for 18 years but have slowly gotten worse because of a lack of beneficial treatments.
For the last 10 years since 2013 I 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 able to use my phone, computer or camera or communicate in any way. I was unable to work on anything or do any of the things that used to bring meaning to my life. Even when I was alone in my room minor movement or 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 was more horrific than anything I ever could have imagined.
When caregivers came into my room to bring me basic necessities, I had to hold completely still, with earmuffs on and a towel over my eyes to isolate myself from them as much as possible. Moving even a muscle with them in the room would make my health worse.
i have recently seen some minor improement from a new experimental drug that I started in 2020. it is not a 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 things like this to communicate what severe ME/CFS is like. Though even writing this is a strain on me and i have to pace myself and be careful or I could get worse.
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. 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 myself 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 almost no spontinaeitiy or sense of life or freedom.
I cannot work towards any of my dreams. They are all on hold as my life is held captive by ME/CFS. This experience is heartbreaking as it goes on for yet another year. The only thing that holds hope for me getting my life back is research by Ronald W. Davis.
UPDATE by Janet Dafoe (Whitney's mother)
Unfortunately, the drug seems to have stopped working, or some thing else has happened, so that Whitney's health has significantly declined, and he is back to his former completely bedbound state unable to do anything or communicate much at all. But no one ever writes for Whitney. Whitney pantomimed the sections on what Ron's lab needs this year with direction and information from Ron.
Pleaese consier donating to my birthday fundraiser to fund Ronald W. Davis's reseach through The Open Medicne Foundation to help stop the suffering of millions and end ME/CFS.
