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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Good Science ME/CFS Grants Being Turned Down By NIH

Superman’s and other good ME/CFS scientists’ brilliant grants are currently being turned down by NIH. Part of the reason is that the system for grant review is a clusterfuck. Grants are reviewed by study sections, whose reviewers give them a score. They then go to Council, who funds the ones with the best scores. The main problems are 1) There is only money for about 10% to get funded. 2) Reviewers nit-pick the grants so only a few get good scores, when in fact, a much bigger percentage of the grants are good 3) Reviewers are often underqualfied and uninformed about the subject of the grant so their criticisms are bogus. 4) Council takes these bogus reviews as gospel and just funds the top few, without any evaluation of the competence of the reviews or consideration about the importance/urgency of the science. 5) The leadership at NIH is obviously not committed to addressing the urgent problem of millions of people suffering from the horrific disease of ME/CFS.

What is required is that scientists focus on researching things that can actually make a difference and lead to treatments or a cure for this disease. Grant reviewers are looking for a hypothesis that can be researched and lead to an answer that can be published. Ron isn’t thinking about getting published; he’s trying to find answers to what’s happening inside the bodies of ME/CFS patients and discover an intervention that might help. What he wants to do isn’t always so simple as "hypothesis, research, publication" and the grant reviewers only like grants that use existing, well-established methods that will lead to a publication. They can’t imagine that anything they have never seen before could actually work. All of Superman’s grants involve things they have never seen before. They don’t understand it, which when combined with what a mess ME/CFS is, makes it even harder for them. A lot of them also probably know nothing about ME/CFS or are prejudiced against it to begin with.

Another thing that gets in our way is actually probably a good thing most of the time. NIH has a rule that they are not allowed to communicate with the grant reviewers. I believe it’s to try to keep things impartial. However, this rule hinders NIH from intervening and urging acceptance of Ron’s grants and other good ME/CFS grants to try to make it impartial as it should be. I don’t believe NIH is allowed to pick who reviews which grants either. However, the Council’s JOB is to make certain the reviews are competent and unbiased, and that the research addresses urgent and nationally important topics. In the case of ME/CFS, their job should be to make sure ME/CFS has adequate funding and to make certain the research is likely to make progress towards understanding the disease in a way that might lead to treatment and cure. Not just a bunch of random data to publish.

This is all true, but to blame this as the cause of the problem presumes that the various heads of NIH actually want these grants approved in the first place.

What is also true is that NIH is engaged in a duplicitous publicity stunt trying to continue their 40 year campaign of intentionally ignoring ME/CFS and systematically denying grants simply because they relate to ME/CFS while at the same time trying to cultivate a public image of supporting ME/CFS. NIH has recently been saying things like "we want to and are ready to fund ME/CFS grants ‘based on good science’ so turn in grants and we’ll fund them". Sounds good right?

But when good science grants about ME/CFS are submitted to NIH these doo-hinkus whos-awhatsit scientists review them and find absurd reasons to give them bad scores so they then get dismissed as "bad science".

I’ve got news for you Francis Collins (the Director of NIH). Ronald W Davis doesn’t write/speak/think/feel or even shit "bad science". We see the game you’re playing, and we think you are even more depraved a human being for playing it. Either do the right thing and fund worthwhile ME/CFS grants or publicly face the blatant prejudice you are enacting.

We know your system is difficult, but we also know that you are the Director and you are capable of intervening when there is a severe health crisis so that it gets addressed. It’s been done before. You just have to believe that we have a real disease, that we are suffering, that more people will suffer, and that science needs significant funding to end the disease and end the suffering. And you have to care. You told us "We are the National Institutes of Hope", "We are a family, in this together." and "We are ready to fund good grants". You need to put your money where your mouth is. You know what a good grant looks like.

This isn’t something you’re going to get away with. We all see what you are doing, will remember it, and history will record it.

Until Francis Collins finds his humanity, the Open Medicine Foundation funding Ron’s research is entirely privately sourced. https://www.omf.ngo

Can you please consider donating today to help #EndME/CFS?

Here’s a direct link to donate to the Open Medicine Foundation to support Ronald Davis’s research: https://www.omf.ngo/ways-to-donate/
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