Whitney Dafoe
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ME/CFS Collaborative Research Center at Stanford

Part of the
Stanford Genome Technology Center
The ME/CFS Collaborative Research Center at Stanford (MECFS CRC) is where the best research into ME/CFS is happening anywhere in the world. Your donation will have the biggest impact on patient's quality of life and go the furthest towards finding a diagnostic, treatments and a cure.
Click here on the ME/CFS collaborative Research Center Website:
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The Open Medicine Foundation (OMF) advocates for ME/CFS awareness and research funding that they allocate to ME/CFS research centers around the world. Ronald W, Davis, the Director the the ME/CFS Collaborative Research Center is the director of the scientific advisory board for OMF. They are a wonderful organization. But if you donate to OMF, only a portion or possibly none of your donated funds will go to the ME/CFS Collaborative Research Center at Stanford, where the best research is happening. However, you can donate to OMF and specify in your donation notes that all the funds go to the ME/CFS Collaborative Research Center at Stanford. They will honor that.

Support My Advocacy Work  

If you enjoy or benefit from my writings, photography and advocacy work please consider becoming a patron or making a contribution to support me continuing this work. It is expensive to produce and requires a great sacrifice on my part. But please do not feel obligated or hurt your ability to sustain yourself financially. My work will always be available to everyone for free.

You can also support me using these services:

Learn more about supporting my work


A lot of you ask or wonder in the comments how I write these pieces or make these photographs in this blog when I’m so severely ill with ME/CFS. The answer is actually pretty simple - sacrifice.

For example, during a recent week I woke up with energy and immediately used it to start working on a post to share on my social media pages. But after writing the post, making photographs for it and getting it scheduled on Facebook and Instagram and Twitter and published on my blog (which all adds up to a lot of work), I was exhausted and wound up laying down still, sleeping uncontrollably for the rest of the day. And these are long 36 to 48 hour days for me. For complicated reasons, my schedule does not go with the sun, but rather with how long it takes to pump enough calories worth of liquid food into my jtube to sustain me, and when I can’t sleep or my stomach gets sensitive and delays my schedule, which happens most days, I wind up with 36 hour or 48 hour days. So in the end, the only thing I was able to do for 3 days was make a social media post during the only time that I had any mental clarity. The rest of the time I couldn’t answer emails, or spend time with my Niece when she was here, or text with my sister, or stay connected with people I care about online, or watch any movies or series, etc. I laid in bed still and mostly slept. This pattern is quite common for me.

So it’s not that I have more energy than other people, it’s that I prioritize writing and photographing and sharing that with all of you above all else. When I have energy, creating advocacy content is the first thing I do and often the last.

I had the idea recently to offer people the option to support this work and the energy I put into it. I don't have much going on outside of this work like a job, or a relationship, or many friends, or much energy to connect with my family. This is what I do with my free time and energy.

After I got a bit better from Abilify, I had the energy to work on more than I can now and more than this ME/CFS advocacy work and I started making my own headphones which is a hobby I started when I became housebound, as it’s something creative I can do sitting down inside that uses little energy. I completed multiple headphone models and started a website hoping to start a company selling them. You can read more about my headphones here:

 rhythmdevils audio

But I am now too sick to make production units to sell, so decided to hire a friend to make them for me, but I now have too little energy to train him and I’m worried about crashing from the training sessions even if I take Ativan to protect me. So it has been delayed for a long time. But i’m telling you because I may have a headphone company up and running at some point. Still, any funds generated from that company would just go towards paying back the significant R&D costs of developing them. And I’m too sick to keep creating new models and possibly too sick to make the company happen at all which breaks my heart as I’ve put so much love into the project and they are truly special, one of a kind headphones. So I may eventually have another job, but right now this work is my job and my purpose and it will always come before anything else.

My ME/CFS advocacy work also costs a lot of money in all the equipment I need to maintain like my computer, backup hard drives, the latest iPhone for the best image quality, a DSLR, a huge amount of camera gear to allow me to make images from bed, etc.

So since this ME/CFS advocacy work is a job for me (one I love) and is expensive, I’m going to let people make contributions to my work if they choose to on a Patreon page I’ve created, or directly with one time or recurring donations in multiple payment formats.

I want to be clear about this with you all though, that it is an option. I know that many or most of you are having a hard time financially, as this illness usually takes away our means of income while at the same time costing a lot of money because insurance doesn’t consider it legitimate. I could not even get a wheelchair from my insurance company covered when i could no longer walk to the kitchen to get food to keep myself fed, and a wheelchair would have allowed me to get to the kitchen freely. I had to buy a used wheelchair myself on Craigslist. This is just one example of course, there are many examples like this from all of us, most of which are cruel, inhumane and devastating. So I understand that it is difficult or impossible to maintain an income and a very expensive life to lead.

So I want to be clear that nothing I create will ever cost you money. I will never charge for anything of substance that I create unless it is published somewhere that does charge money for accessing it. My goal is to help ME/CFS patients, not to make money.

I also understand that donating to ME/CFS research is the most important thing, and I have links to donate to ME/CFS research displayed prominently everywhere i can, always above any link to support me.

But I believe that we need more than just research donations and that my work is important for awareness (which generates research donations) and directly important for patients, caregivers, friends, loved ones and our world wide community as a whole to survive and sustain itself.

So I want to allow people who can give back to me an opportunity to do so in whatever amount makes sense to them financially. I might make some exclusive content on my Patreon site, but it will never be anything that I think would benefit fellow patients or the community, it would only be fun bits and pieces. And if you donate a certain amount that makes it financially possible, I hope to offer an annual print of an image of mine, possibly with a quote or bit of inspiration.

I’m telling you this because I know how the internet works, rumors spread quickly and often seem more valid than the truth. I want you to know the truth here first and avoid you just finding "support my advocacy work" buttons on my blogs or pages and thinking the worst or hearing rumors from others about secret content. There will never be secret content for people who can contribute, only the knowledge that you are supporting me and possibly a gift if the amount you contribute makes a gift financially feasible for me to give back to you and I have the energy to create such a gift on top of my work.

Most importantly I want to be clear that I only want people to give what they can and what feels right to them. If that is nothing, that is fine.

So when you see buttons here or there to support my advocacy work, do not feel pressure, do not feel obligation, just feel an opportunity to give back to me if you enjoy or have benefitted from my works and if you are financially able to give an amount that won’t negatively impact your life.

I want to thank all of you regardless of whether you can give back to me financially or not, because you all give back to me in a huge way. I will always be grateful to this entire community for the sense of purpose you have given my life in this work. I don’t know what I would do if I had no way of helping the ME/CFS community. Even in 2013-2020 before I took Abilify, when I could not make this work because I was too sick to use a phone or computer or camera or even communicate in any way whatsoever, I was planning this work, writing pieces in my head, going over them time and time again so I would not forget them, and imagining what I would create. You all have given me a way to, in some ways, fulfill my dreams of using my creative energy to help people.

So thank you all so much from the bottom of my heart. I love the ME/CFS community, I love all my fellow ME/CFS warriors and the people who help them or sustain them or befriend them or love them. I love this whole community very deeply and would do anything in my power to help all of you.

Love,
Whitney  
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Whitney Dafoe holding a red kidney bean next to his ear.

A BBC TV Show Tells Millions of Viewers that ME/CFS is a Trivial Joke

  Accessibility: View shorter version of this post

A British TV show called "Dragon’s Den" which has an audience of 3 million viewers knowingly aired an episode on January 18, 2024 in which a guest named Giselle Boxer talked about being "cured" from severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) by putting a bead in her ear called an "Acuseed" which purportedly triggers certain acupuncture points. People all over the world watching this show were told this had cured her of severe ME/CFS and brought her from bedridden to completely cured.

But there have been no studies on "Acuseeds", there is no research to back up her claims, no way of knowing if Acuseeds had anything to do with her recovery, and "Acuseeds" don’t even come from acupuncture or any kind of traditional medicine, they were simply made up by someone who took a few classes in acupuncture.

There is no known cure or even viable treatments for ME/CFS according to every ME/CFS researcher around the world.

An ME/CFS patient named Agy Lena has been following this story beautifully, so check out her Twitter (@agy_lena) and Instagram (agy.lena) accounts for the most current information. She recommended this as the best article published to date on the scandal.

The show "Dragon’s Den" features entrepreneurs who show a panel of 5 wealthy investors (the "dragons") their product and the investors choose to invest or not live on the show. In this particular episode, all 5 entrepreneurs invested in the "Acuseeds" with excitement.

The show told 3 million viewers worldwide (plus all the people who watched it later in various ways which is millions more) that ME/CFS is not a real or serious illness and can be cured with simple, cheap, currently available treatments like "Acuseeds"; Reinforcing and strengthening the same prejudice we have all fought against and suffered from for decades. Anyone watching this show walked away thinking there is no reason for additional care programs, hospital and doctor education, or research funding because any ME/CFS patient could be cured by cheap, currently available "treatments" like Acuseeds.

Giselle Boxer has also previously credited her recovery to positive thinking, and talked about how sad it is that so many ME/CFS patients are still suffering because they are "stuck in a negative mindset".

"There is a lot of negativity…People get very bogged down with their condition and symptoms. It’s all they think about. They are very stuck in that negative mindset."

- Giselle Boxer

ME/CFS patients are real people with real dreams, aspirations, passions, loves, families and life long careers and accomplishments ahead of them that are ALL taken away by ME/CFS. I don’t know a single ME/CFS patient who wouldn’t do ANYTHING to get all of this back, including any kind of therapy to resolve "negative thinking". Thinking more positively has never cured a single person who actually has ME/CFS. If positive thinking cures you, it means that negative thinking was the cause of your symptoms and you never had ME/CFS to begin with.

The BBC, Dragon’s Den, and Giselle Boxer think it is ok to trivialize an illness that has destroyed millions of lives by taking a treatment for this illness seriously that has undergone zero testing and isn’t even real acupuncture or any form of real traditional medicine, but something someone with no degree or qualifications of any kind simply made up. It involves putting a bead in your ear that supposedly triggers "acupuncture points". This is irresponsible for any subject, but when the product is credited on the show for curing a real illness, the consequences are unimaginably horrific because people watching the show believe it is real and true.

The BBC do background checks and investigations into any kind of product they are vouching for and airing on TV even if it is not said to be a cure for a chronic illness. They would do more background research than this into the product and Giselle Boxer herself if she was selling paint brushes or a new kind of screwdriver. Let alone a cure for a chronic illness.

And they certainly would do more background research for a product purported to cure any other health condition. The BBC would never let someone on Dragon’s Den claim that an unproven product cured cancer, or MS, or Lupus, or Diabetes, or any other illness; Or even something much more trivial like baldness or dry eyes. And furthermore, no one would get away with making claims like this about a treatment for any of these illnesses. They would be boooed off the stage and kicked out immediately, if for no other reason, for fear of huge public backlash or lawsuits.

But with ME/CFS, The BBC somehow feels like it is perfectly fine and our society lets it happen. What is it about ME/CFS that makes this ok? Do they not realize that ME/CFS affects real human beings?

And do they not realize that ME/CFS has no known cure or even cause? Do they think that with all the Nobel prize winning scientists trying to find a cure, it was Giselle Boxer who found one with a bead in her ear? ME/CFS cannot be cured by putting a bead or even a bean in your ear, whether it’s a black bean or a pinto bean or even a chickpea. 😉

ME/CFS patients lose everything from this illness and often lie bedridden for decades. They not only lose their ability to be physically active, they often cannot even move at all and are forced to lay completely still for endless days/weeks/months/years. ME/CFS patients also lose their minds to a blurry mental fog that takes away the essence of who they are as people and their ability to express that. And they often face a myriad of unbelievable symptoms on top of this that make life a constant struggle and oftentimes put patients in constant pain. This is REAL, PROFOUND suffering unparalleled by any other chronic illness and it is absolutely shameful for a news organization as credible and popular as The BBC to not look into any of this and air this episode, and then go on to defend it when all these problems were brought to light by ME/CFS advocates who contacted the BBC and spread messages criticizing the show across social media.

Lauren Hoeve - @dutchlauren on Twitter, a 28 year old woman from the Netherlands with a whole life ahead of her JUST ended her life on Saturday, January 27th by Euthanasia as a direct result of the same prejudice that BBC happily and knowingly aired all over the world and which they are continuing to defend. As well as the mentality that Giselle Boxer has publicly shared that ME/CFS is caused by "negative thinking". Because if it were not for the continued ignorant, callous spread of prejudicial misinformation like this, ME/CFS would have proper research funding, we would have proper treatments and/or a cure by now and no one with ME/CFS would be faced with the decision to end their lives because their suffering is so severe and they have no hope for an end to that suffering. It is misinformation like that shown on Dragon’s Den that perpetuates this prejudice and thus perpetuates the suffering of ME/CFS patients.

We have all worked so hard with the tiny amount of energy we have to slowly change the public’s image and understanding of ME/CFS and what the BBC just did countered this directly. This show likely had more reach than anything else related to ME/CFS in history. And who is someone more likely to believe - The BBC, or a bunch of patients who have no credentials or notoriety?

BBC News, the TV show Dragon’s Den and Giselle Boxer are directly responsible for the future deaths and suffering of millions of ME/CFS patients due to their spread of this bigoted misinformation. Because what they have done will have a profound effect on the future awareness of ME/CFS. People who saw the show or know about it will say or think "but you can be cured of this disease by putting a bean in your ear, so why are you just lying there? Why don’t you try harder to get better? Why are you letting negativity ruin your life? Etc". More people will disbelieve and neglect ME/CFS patients rather than take them seriously and help them get the care they need to avoid them getting worse, deathly sick, lose their entire lives or worse. And if the public thinks a simple treatment already exists, they won’t donate to ME/CFS research because they won’t think there is any reason to.

The truth is that there are few ways in the world to give money that has such a huge impact on the quality of life of people per dollar as giving to ME/CFS research.

ME/CFS is not a joke to use to pawn snake oil products. Aside from the suffering the illness causes to patients and everyone who loves them and must devote their lives to caring for them, when someone becomes sick with ME/CFS the whole world loses everything that person might have become or contributed to the world. And we may lose their life itself to ME/CFS directly or to suicide. We are talking about millions of people! Think of all the incredible, beautiful things that were never created because of ME/CFS!

Shame, disgrace, irresponsibility, gross selfishness and a lack of any kind of empathy are the only words left repeating about this segment of BBC News, Dragon’s Den, and Gisselle Boxer.

It is 2024 and this needs to stop. Now. We are real human beings and our suffering is more real than most people could ever imagine.

Love,
Whitney  

PS. I am publishing this a few weeks after this event occurred because I tried to have a shorter version published as an op-ed by a national newspaper, but was unsuccessful. 🙁
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