ME/CFS Awareness Thread

My 40th Birthday Fundraiser!

I’m 40 years old! And I have been sick with a severe chronic illness for which there are few treatments and no cure for 19 years.

Fundraiser:

http://spot.fund/FindACureForMEcfs2023

I actually have been doing a birthday fundraiser for the last 4 years since 2020 but haven’t shared much about my illness here, so I haven’t posted them here.

But after reappearing suddenly in 2020 after being absent from this community for 7 years (I know a lot of people here didn’t understand this at least at first) and then becoming very close with this community for 3 years and then disappearing again suddenly this last summer for 3 or 4 months I would like to explain what has been going on with me and explain the illness and my story a bit and also give you all a chance to donate to the best cause you could possibly donate to. There is no other illness that causes so much suffering and is so neglected, where your donation will have such a huge impact on the quality of life of millions of people around the world.

http://spot.fund/FindACureForMEcfs2023

Spoiler: Background Info

Background:

I have had the chronic illness ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) since I was 21, or in about 2004. My symptoms were mild at first, if I pushed myself I was still able to do everything I wanted to do (but this was bad for me I just didn’t know it at the time because no doctor had diagnosed me with ME/CFS as it is so prejudiced against that very little or nothing is known about it by doctors). The headphone hobby has always been a refuge because it’s beautiful and fun and something I can work on and tinker with and enjoy with little energy in my room when I have no energy to do anything else. I’ve always loved having this so much.

But over the years certain events like traveling abroad made my illness much worse and I continued this downward decline until eventually in 2013 I descended into a living hell. I became completely bedridden, I was unable to speak a word, unable to eat even a crumb of food or a drop of water due to a paralyzed stomach (my nervous system is completely out of whack and sending the wrong signals, usually overreacting to everything), and I became so energy deprived (my body literally lacked enough ATP - and still does but to a lesser extent than before) my brain did not have the ATP to process the world around me. I couldn’t use my phone or computer and as it got worse during those 7 years of hell, I started getting sensitive to things you would never imagine like colors in my room, written words in my room, looking out the window for more than 5 seconds, any human company or interaction and sadly, sounds and music. All of this because these stimuli forced my brain to physically use more energy than my body could supply and I would experience what is called a crash and get much worse, often permanently (or indefinitely). To be clear, these symptoms had nothing to do with my state of mind or any kind of mental illness. There is no connection there, it is a physical symptom caused by an overactive nervous system stuck in "fight or flight" mode and a brain that does not have enough ATP to process even simple things in the world around me.


picture from 2013

It’s really hard for a healthy person to imagine being in this state, they say that the symptoms of Severe ME/CFS cause as much suffering as end stage AIDS or end stage renal failure right before death, but with ME/CFS it goes on for never ending decades.


picture from 2013

Healthy people, or people with most other conditions or illnesses have enough ATP and so don’t experience these unique symptoms. Exercise is good for everyone but ME/CFS patients. Almost everyone who does not have ME/CFS, even if you really push yourself with exercise or work and are completely exhausted, you can go home, sleep, and be ok the next day. With ME/CFS, if I push myself like this, my symptoms get worse for days, weeks, years, or permanently/indefinitely (until some kind of new treatment is discovered)

So that’s why I disappeared suddenly from Changstar (the forum that led to SBAF) in 2013. And I spent 7 years in this hell. Unable to even move for most of the day, struggling to get basic needs met, and having lost everything that once defined who I was - all my friends, my loves, my passions, my hobbies, my career, my relationships. I was completely isolated, alone in my dark room unable to speak or eat food or water for 7 years. And it’s much worse but it gets really devastating and difficult to describe and this gives you the idea I think.



Then I found an experimental drug called Abilify, which at 20-30mg is an anti-psychotic, but in VERY low doses of 2mg was helping some ME/CFS patients (not because it’s an anti-psychotic, but likely due to dopamine or something else - drugs do all kinds of things to our bodies, it would be foolish to yell - "mental illness!" at ME/CFS just because Abilify at 2mg helps some patients- who knows what it is doing, they still do not know why it helps). After spending 6 months working up to 2mg, I started feeling a bit better and continued to improve until I was able to write again and post on SBAF, which is when I came back in 2020.

But that experimental drug slowly stopped working and I slowly got worse. I developed all of my headphone modifications at the height of this drug’s ability to help me, and built my headphone website, and was praying and hoping I would be an exception and the drug would keep working.


working on some Audeze’s

But it did not, and I soon could no longer work on new headphones and then soon could no longer modify headphones at all for other people.

This is why rhythmdevils audio has not taken off. I was able to create all these incredible headphones, but then got sicker again and could not make them for other people. As soon as get better enough, Josh ( @loadexfa ) is going to train with me on how to make the mods, and he will build them and I’ll work on new modifications if/when my health allows.

So then in the summer of 2023, after a couple unexplained fevers my health plummeted and I could suddenly no longer use my phone or computer or type at all without hurting myself and getting worse. And I disappeared from the world again (and from SBAF).

Here is a post on my blog about the experience

I took 3 months off of the wonder drug (Abilify) and started it again and I have been very slowly improving again. Once every 36 hours or so when I get a certain mixture of drugs that calm my nervous system, I can type and use my computer and phone again and I kind of come alive from the dead for about 10 hours. l have a huge backlog of things I need to get done, but I have posted on SBAF when I’ve been able to and to ask some burning questions.

I don’t know where I’m headed, I’m trying not to think about it because not getting back to where I was in 2021 is too horrifying to even imagine. And I really want to get rhythmdevils audio going with Josh and share my headphones with you all, they are really special. Not to mention just get back to a baseline where I can function everyday to work on things without the ups and downs of the medications.

Right now I’m just taking care of myself as well as I possibly can and hoping for the best.

Spoiler: So WTF is ME/CFS?

ME/CFS stands for Myalgic Encephalomyelitis (as it’s called in most of the world, especially Europe) or Chronic Fatigue Syndrome (as it’s called in the USA after the NIH gave it this name randomly when cases were first identified in the 80’s). But these are terrible names, one suggests that I am simply "tired" and the other is a bunch of unpronounceable gibberish that goes in one ear and out the other.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS) is a devastating chronic illness with few treatments and no cure, 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 process . 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, 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 (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 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 our 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. 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 post "Good Science ME/CFS Grants Being Turned Down By NIH" for more information about this ) Because of this complete lack of understanding, wild ideas and theories run rampant. When the medical community is confronted with a 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 reality of this disease)

ME/CFS to this day continues to face extreme prejudice and is still, in 2023, 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 dollars 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 and has no good reason not to). ME/CFS researchers have 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.

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 my birthday fundraiser. 100% of the funds go to towards Ronald W. Davis, PhD’s research at Stanford, funded by the Open Medicine Foundation (OMF). The best ME/CFS research in the world is being done 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. All current work and research in genetics is dependent upon breakthroughs he made in genetics. 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.

Sadly, until we can find enough answers and irrefutable proof of a real, physical illness that makes prejudice a thing of the past, and NIH is forced to invest in ME/CFS research, funding is almost completely from private sources - patients and people who know patients.

Please choosing this cause for your donations this year and giving whatever you can and if possible make it a recurring donation, which really helps them solidify their future.

http://spot.fund/FindACureForMEcfs2023

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 (aka rhythmdevils), severe ME/CFS patient

Headphones, music and this hobby have been one of the only sources of pure joy since I got better in 2020 and could listen to music again (that first song after 7 years without music was incredible!). There are few things I can do with my limited energy from bed that bring me simple joy, meaning and happiness. Modding orthos, putting together a fantastic rig, trying out different amps and tubes, constantly listening to and collecting new music, is a real joy. The rest of my life is struggling to get by, dealing with symptoms and the illness, and advocating for ME/CFS.

None of you know this, but I’m actually the most famous ME/CFS patient in the world and have become sort of the poster boy for ME/CFS. A combination of Ronald W Davis being my father, having one of the most severe cases of ME/CFS ever known throughout the world, and opening up my life completely without question to journalists, my own writing and my own photography (of my life) and anything I can do to spread awareness (like this post sharing my life with ME/CFS with you all).

My father Ronald W. Davis, PhD spent most of his career working on Biochemistry and Genetics and has made some of the most famous discoveries in the history of Genetics. All modern Genetics depends on the work he has done and discoveries he had made. But when my health kept getting worse, and when I was diagnosed with ME/CFS, and continued to get worse, it was clear to him that he needed to try to figure out the disease himself because so little was being done to find treatments, cause, diagnosis or a cure. So he has slowly shifted all of his work from Genetics to ME/CFS Research and founded a research center for ME/CFS "The ME/CFS Collaborative Research Center at Stanford".

A book was recently written about the story of me and my father - me fighting to survive and spread hope and awareness and my father seeing me so sick and deciding to devote the rest of his life to finding a cure to get me the hell out of here. It is called "The Puzzle Solver" by Tracie White, or in some countries it is called "Waiting For Superman" (because I made a ME/CFS mix of songs with the song "Waiting For Superman" and declared that Ron was Superman, which a lot of ME/CFS patients call him to this day). Here’s a link to that first ME/CFS mix.

So I really value this community full of kind, intelligent, passionate people and music and the joy of creating more beautiful sound through modifications of orthos and different gear. It’s a real distraction and break and something I can get excited about.

But I need to get my life back. Or at least get to where I can work on things in bed again.
Ronald W. Davis needs 3 instruments right now for his research that he cannot afford, and this fundraiser hopes to fund the purchase of these instruments. (more details on the fundraiser page)

http://spot.fund/FindACureForMEcfs2023

More information about ME/CFS

Here is a video of images of me showing my life before and after ME/CFS:



My website and social media pages where I have been photographing my life with brutal honesty and writing about life with ME/CFS, advice for fellow patients and the community, and advice to help patients survive.

• My ME/CFS Blog
• Facebook
• Instagram
• Twitter

The Puzzle Solver, a book by Tracie White, about me and my father, Ronald W. Davis. (amazon link).

If you are not in the US, here is a post on my blog with links to buy the book around the world

Here are some videos of my father, Ronald W. Davis, PhD, talking about the illness and his research and some of his hypotheses. The video quality is horrible because my mother insists on filming them herself (and apparently can’t see well enough to even center my father haha) but the content of what he’s saying is fascinating.









The Resources page on my website has many more links to more information about ME/CFS.

https://www.whitneydafoe.com/mecfs/resources

Thank you everyone for reading and for donating if you can! And I’m so sorry for not being able to make headphones for you all, please hang in there, and hopefully soon I can start making them with Josh’s help.

Love,
Whitney

 

I just want to mention that this post isn’t meant for pity and I don’t want to be treated any differently (except for tons of free gear of course ). The ME/CFS community really needs both the funds for research and the awareness, and this is a community outside the ME/CFS community. Understanding about the illness is hard to get outside the ME/CFS community of patients, caregivers, supporters, and the few ME/CFS doctors. So I’m doing what I can. But please feel free to continue calling me a dickhead.

 

Will do! Dickhead.



Fabulous post! I still learn new things from your ME/CFS posts.

For everyone else, the book Whitney mentioned is really interesting, I read it when it came out and recommend it.

 

Thanks for trusting us enough to share this here @rhythmdevils. @purr1n let's get this on the front page!

 

Just made a small contribution to the fundraiser. It’s more than half way to its goal! Let’s go!

 

thank you for making me feel safe enough to share. it's the only way awareness spreads, as most ME/CFS patients let all the prejudice control them and they hide it from everyone they know.

Harvey Milk said something like "every person who doesn't know you are queer is a person that doesn't know someone they are close to is queer, and that has to change."

 

Super f'ing Best Audio Friends. Whitney, you're a dickhead in the best possible way. Words fail to express both my gratitude for sharing your spirit, and my admiration for your strength.

 

I was recently made aware of ME/CFS from a big science YouTuber who has it as a result of long COVID



It seems extremely difficult to live with and I’m glad you were able to contribute here even in a limited capacity. 40 years is a major milestone for anyone and I hope the fundraiser goes well

 

❤️❤️❤️

 

Modest donation made.

I have known people with ME, with or without other complications. It's not fun, even when less severe. I have never seen anybody so debilitated by it as rhythmdevils.

How easy it is to say "nice" things, like get well soon, and wishing you well. I doubt that it is very useful. But never mind the words, of course, the good wishes are there.

 

Happy birthday Whitney! I wish you and your father the best

 

Whitney: I've struggled with chronic fatigue for the last 25 years, and it has been a hindrance to activities, my ability to work, and relationships, but the intensity of my fatigue doesn't approach yours. Like you, I've benefited greatly from amazing parents who always do whatever they can to help. I've enjoyed your posts in the last couple years and I knew you were ill, but appreciate the greater insight into your situation, and your promotion of the cause through your vulnerability. You'll be in my prayers.

 

Whitney, hoping you get your life back very soon. Donation to your Dad’s research made

 

Would love to hear some of the treatment options. I've done quite a few different things, but mostly conventional medicine and therapies. I've done TMS and IV Ketamine which both helped I believed. I wish I had more money to invest into those treatments, but it is very difficult when you are alone and you need someone to drive you after the IV drip. TMS is 45 days straight.

I've wished Whitney well in PM and hope he continues to keep his passions alive.

 

Turned 40 myself this year. Made a small donation. Hoping for a cure!

 

If you haven’t already visited Whitney’s website please do. He’s an excellent photographer.

https://www.whitneydafoe.com/photographs/

 

Whitney and I have talked privately so I know his situation. I've (for obvious reasons) never mentioned anything publicly but since he has, I just wanted to say one thing.

Making such a personal situation public, and to the extent that he has, takes incredibly huge balls. I couldn't do it. People who step up in incredibly difficult circumstances change the world and make life easier for the rest of us.

Top notch human being.

 

Wishing you a miraculous 40th Whitney!

 

Thank you so much for all the support and kind words and to everyone who donated, however much.

But also thank you to anyone who thought about donating or wished they could donate. And thank you to everyone who read about ME/CFS and now knows what it is!

I was a bit sad to post this here because this is the last place I have that is not all about ME/CFS, but given my new absence it's better to explain than for whispers to spread. And I'm committed to opening my life up to the world in every way possible for the sake of awareness, even if it's' uncomfortable. If everyone did this, ME/CFS would not be in the closet to this extent.

This community is very special for being so supportive and not responding with a single negative or BS post.

I'd like to share the post I just worked on tonight about ME/CFS and Thanksgiving. (I'm now exhausted)

"Hungry Ghosts" on Thanksgiving 2023

Thanks again for all of your support. This is truly the best cause you could possibly support, your donation goes SO far to help ease the suffering of millions of people. I pray we have a cure soon, turning 40 has not been pleasant stuck here in bed with a cold on top of ME/CFS. I'm too sick to see any family and cannot eat at all.

 

Since you re-appeared in our community I was curious but did not want to inquire what is going on.
Another friend of mine caught severe edition of mononucleosis - he was so tired for several months (I think 4 months all in) that he did not get out of his house and barely ate and did anything worthwhile.
His comments afterwards were - ''next time I'd rather die'' or something like that.
What you have is obviously worse and there appears no escape.
You have strong spirit - never give up!
Major good wishes and prayer towards you recovering.