Best ways to donate to ME/CFS Research  

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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.

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The True Horror Of ME/CFS

In honor of all those living in silence and darkness, to those whose terrible deaths were marked as cause "unknown" and to those who have taken their lives due to unbearable suffering, I must convey the terrifying true horror of ME/CFS.

According to an Institute of Medicine (IOM) report published in 2015, an "estimated 836,000 to 2.5 million Americans suffer from ME/CFS", but it states that "an estimated 84 to 91 percent have not been diagnosed". I’m not sure how anyone thinks they can accurately guess at the number of people afflicted by a disease for which it is so difficult to obtain a diagnosis. What logic or thought process led them to these numbers?

The truth about the epidemiology of ME/CFS is much worse than these estimates and likely has been for hundreds of years or since the disease began. This becomes obvious by looking at what we know and using simple logic to extrapolate from there. These are the logical steps:

1) We only hear from people who are diagnosed. How hard was it for you to get diagnosed? It took me about 7 years of constantly seeing doctors. I was told my symptoms would resolve themselves, or that nothing was actually wrong with me, or there was just no answer and nothing else to test for, or the famous "it was in my head and not a physical illness". How many people have the fortitude to keep going in the face of this, and for how long? It takes a very specific kind of person to be utterly relentless enough to continue pushing doctors to dig deeper and continue seeing new doctors for a second, third, fourth, fifth—and even more—opinion, all the while ignoring the blatant prejudice and disrespect constantly shown to them. Everything pushes ME/CFS patients to give up and try to either live with their "health problems" (what I called it for years) or kill themselves. What percentage of people out there with ME/CFS have the chutzpah to keep fighting for answers in spite of all of that? 10%? 5%? Less?.

(2) Of that small percentage of ME/CFS patients who are diagnosed, how many are lucky enough to remain mildly sick and not get worse, despite holding a job, taking care of kids, feeding themselves, feeding a family and doing all the myriad other things it takes to be an independent adult?

3) Of those who get diagnosed but become too sick to care for themselves, how many are lucky enough to have family or loved ones who will support them and take care of them? It’s worth noting that it’s much less likely that undiagnosed ME/CFS patients will have family/friends/loved ones who will be understanding enough to help them or take care of them. Even for diagnosed patients, there are few people in the world who have access to the care that is necessary to keep someone with severe ME/CFS alive. I know how lucky I am. It takes loved ones who are willing to give up their personal and professional lives, with enough money to pay for huge medical bills that aren’t covered by insurance, because we don’t have a "legitimate disease". That combination isn’t very common.

4) How many are willing or able to carry on emotionally, continuing to survive the horrifying "living death" that defines severe ME/CFS?

5) Of those who manage to get 1) a diagnosis and 2) are lucky enough to either not get worse (rare, especially if they are trying to maintain a healthy person’s workload, which is very common) or 3) have people in their lives willing and able to take care of them and 4) are emotionally able to carry on despite the incredible suffering ME/CFS inflicts, how many of this dwindling percentage are interested in or capable of using social media and finding the forums and social media pages, and how many are even capable of using computers (many ME/CFS patients are not able to)?

This is what it takes to be "seen" as an ME/CFS patient. The people on Facebook, Twitter, Phoenix Rising, Health Rising, Reddit, and other ME/CFS forums are the very tip of the iceberg. We only hear from people who make it through these five tiers. It’s likely that this is a very, very small percentage of ME/CFS patients.

What happens to the rest of the diagnosed/undiagnosed ME/CFS patients in the country/world? This is something no one talks about. If you just look at the facts, human nature and how our society functions, it suddenly becomes horrifying. The "lucky" ones maybe wind up in nursing homes or psych wards surrounded by noise, light, bright colors, food they can’t eat, confounded doctors and nurses and medicines and treatments that harm them. I can only imagine that most of these patients continue to get worse due to improper treatment until they die or descend into an even deeper abyss of severity and suffering, never to emerge again. But the paperwork involved to get Medicaid to pay for a nursing home is tremendous and something I can’t imagine an ME/CFS patient with any degree of severity managing without help. There must then be a great number of severe ME/CFS patients who are unable to find public housing and who wind up on the streets, getting worse and worse until they die a terrible death alone in a gutter somewhere. I believe this happens to a huge number of ME/CFS patients.

How many people are as sick as I am? Few of us are publicly known, but surely there are staggering numbers of people as sick as I am. It’s too easy to get this sick with ME/CFS which is usually a one-way street; An unavoidable downward spiral. Even if the IOM estimates are correct and one quarter of the "up to 2.5 million" are severely ill, that’s "up to" 625,000 severe ME/CFS patients just in the U.S.

I’ll ask again: what happens to all of us who don’t fit into these five tiers? A majority of my fellow severe ME/CFS patients have likely either killed themselves or will die alone somewhere; hundreds of thousands of us or more. We need the support of federal health agencies to fund research and care programs. We need ME/CFS wards to house and care for ME/CFS patients who don’t have anyone to take care of them or cater to their sensitivities properly. And yet they don’t exist. So many of us have just been left to die alone. In a crazy public care home. On the street. In a back alley. In a parking lot. In a ditch. And their deaths are not even recorded as being caused by ME/CFS. All of this will get inconceivably worse with Long COVID adding to the numbers.

Beyond this urgent humanitarian crisis, there is also the tragedy that if the truth of this suffering and these deaths were known, ME/CFS would be treated with much more respect and likely be funded adequately and patients treated properly by our country’s safety net.

We must not waver in our push for human rights. We must continue telling the world the truth at every opportunity and through all media. And we must continue to fund research as much as we possibly can. Because if we do, if we relentlessly continue this fight, one day soon the truth will come out. This truth will be a monumental scandal, bringing great shame to the world. It will send shock waves through the public and through government, and the wall of ignorance and prejudice that has suppressed us for so long will come crashing down. This will be our moment. We will rise from the darkness like illuminated ghosts. And we will finally be treated like human beings.