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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Graphic of hands held in a circle, advertising long Covid awareness day 2024.

Honoring Long Covid Patients

  Accessibility: View shorter version of this post

Today we honor all of the millions of people who got Covid and just never recovered. These are people from all walks of life, every kind of person in society from race to socio economic background to gender to sexual orientation. Good people who wound up with Covid but didn’t get better like other people did. And they didn’t know why. And they were scared.

Doctors told them they’d get better soon, they just needed to wait for their bodies to "heal". They were told they had to try harder and exercise more, which made most of them feel much worse. They were told they were just "depressed" from getting sick or that it was "all in their head" and they had to "get over it because they didn’t have Covid anymore and had no excuse to keep laying around the house". We all know how this heartbreaking story unfolds as it has happened to all of us.

People who got Covid early on in the pandemic and never recovered didn't get a diagnosis because there wasn’t even a name for it yet. They lived in constant doubt of themselves and fear about what was happening to them. They knew something was seriously wrong, but they had no idea what, and doctors either had absolutely no answers for them or told them things that made them doubt the very core of who they were as human beings. Many of these people were finally diagnosed with what we now call Long Covid, but there are untold numbers of people who are still sick in limbo with no diagnosis.

Long Covid patients are still suffering to this day and face what ME/CFS patients know too well - an all encompassing system of neglect, prejudice, abuse, abandonment and medical malpractice from all levels of our global society. When Long Covid patients didn’t recover from their initial Covid infection, they slowly started losing their entire lives and were often blamed personally for these losses as if it was somehow intentional or avoidable or their fault. They lost people they thought would be in their lives forever, and were often left to deal with their new confounding health problems on their own. No doctors, no glossy pamphlets, no medications, no treatments, often no understanding or acknowledgement from loved ones, family or friends.

Today we take a moment to reflect on what Long Covid patients have been through. [pause]

ME/CFS patients, caregivers, family members and supporters know this story well and can relate to all of it, but people unfamiliar with a disease that faces so little understanding and so much prejudice may have to make an effort to understand what the Long Covid patients they know are going through. If you know someone with Long Covid, please listen to them and trust their experience rather than telling them what you think they should do about their illness. Stay by their side by adjusting the expectations you once had for your relationship to fit their new limitations. Remember that they did not ask for this illness and they certainly do not deserve it. And acknowledge that they are the same person you have always known, just with a new life altering illness that changes the way they are physically able to be in your life. Whatever connection brought you together, whether it is family, love or friendship, is still there if you are willing and honest enough to look. Above all, never push Long Covid patients to do more than their new lowered energy limits allow, this is the worst feeling in the world for patients as it makes them feel completely misunderstood and the advice is harmful if it is taken.

The abuse Long Covid patients have faced is the same abuse ME/CFS patients have faced for decades. And much of the experience of having Long Covid and the symptoms experienced are the same as ME/CFS. Some Long Covid patients experience PEM and some do not but we all have post viral illness and we must unite for the sake of our dreams of a future where these conditions no longer exist.

For research It is important to distinguish between ME/CFS and Long Covid because Long Covid patients have had the disease for a far shorter period of time and can also have unique symptoms caused by the Covid infection. Furthermore, treatments for both diseases need to focus on the particular symptoms of the patient, as these can vary widely, as we have seen in ME/CFS for decades.

Despite any differences, there is so much Long Covid patients can learn from the ME/CFS patients who have been living with this condition for years, decades or entire lifetimes and have developed tried and true strategies to not only stay alive but also to live as full a life as possible. ME/CFS patients can help Long Covid patients learn how to cope and keep going in spite of the uniquely profound suffering both illnesses cause and the myriad complicated symptoms we all face. Not all symptoms overlap between ME/CFS and Long Covid, but many do and there is no need to isolate or divide ourselves and figure these things out all over again.

Long Covid patients can look to ME/CFS patients for help and answers and the ME/CFS community should reach out and offer support. We are one community of patients with post viral illness. And we can all support each other and learn from each other when literally everyone and everything else has let us down.

We can help each other process the loss of our former lives and former identities as we are stripped bare of all the titles and badges and labels our former lives gave us to identify with. Once we lose our former lives we find ourselves spiritually and mentally naked and must look within to find identity, meaning and purpose. This is not easy, but it is a process every ME/CFS and Long Covid patient must go through to survive the new life that has been forced on us.

Please read my blog post called   "The Naked Self"   to learn more about this process of identity loss and finding yourself when you no longer have any worldly labels to point to.

PEM symptomatic Long Covid patients can look to ME/CFS patients for recommendations on managing the extremely difficult minefield of PEM with the lessons of pacing, radical rest, lowering the expectations we had for our lives -see my blog post   "Lowering Expectations"   for more information about this.

As well as adjusting activity choices and changing our entire lifestyle, coping with a crash knowing that it is only temporary, the importance of staying below energy limits, and so much more.

See my post   "Staying Below Energy Limits"   for a detailed examination of this process.

We have arrived here from different places, and while we must acknowledge those differences, we also must remember that we have one common goal: END ME/CFS and Long Covid. It is so important that all ME/CFS and Long Covid patients not only help each other, but also unite under this goal as one force to be reckoned with to a society that just wants us to go away. (until they become one of us and suddenly need our support.)

We must all push for proper research together. We cannot stand for NIH funding brand new Long Covid research that ignores decades of ME/CFS research and just winds up reinventing the wheel, leading nowhere meaningful. We need research into both Long Covid and ME/CFS that builds on the current ME/CFS research and then takes it further. Currently only 8% of grant applications submitted are funded and this has to change. Good, experienced scientists must be funded to do the important research required to make real progress.

We demand real, quality research into ME/CFS and Long Covid NOW; Research led by knowledgeable scientists who have brilliant ideas to actually find a diagnosis, cause and a cure.

Let's learn from each other. Let's advocate together. Let’s lean on each other for support and understanding when we need it most. And let’s help each other survive until we force real change to happen.

Love,
Whitney  
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