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.

Love,
Whitney  
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What Does Brain Fog Feel Like?


Recently, a group of some of the leading ME/CFS researchers in the world were in a meeting and they did not understand what brain fog meant. All of the explanations online are, as far as i know, a few sentences and pretty vague. So I wrote this for these researchers, and I hope you can use it to help explain ME/CFS and your symptoms to loved ones, friends, caregivers and doctors. You can download this in a .pdf file to print it out and take it anywhere or show anyone. You have my full permission to use it in any way that is helpful.

Download PDF

Generally, brain fog refers to brain dysfunction or cognitive impairment. Something caused by ME/CFS makes the brain not function well. I believe it has to do with the brain not getting enough of something vital that is in the blood, perhaps oxygen, perhaps some other vital nutrient or substance in the blood. But that is only my personal theory based on a lot of observation of my own body.

This cognitive impairment can change from day to day, week to week or month to month depending on a patient’s condition. After over exertion or during a crash, brain fog generally worsens until the patient is able to rest and recover, if they do recover from the crash. The worse a ME/CFS patient becomes, the worse the brain fog can be.

We don’t know what causes brain fog yet, but I can describe the experience in detail so it is better understood by the world. Knowing what we experience helps people understand what we are going through, how to best help care for us, and helps doctors guess where to look for causes and problems. It also shows ME/CFS patients that they are not alone in what they are going through.

I would categorize brain fog into MILD, MODERATE and SEVERE, but keep in mind that these levels of brain fog severity do not necessarily correlate to a patient's general ME/CFS severity. In other words, a patient who mostly fits into the "mild ME/CFS" category doesn't necessarily have "mild brain fog". It is also important for us not to get stuck in concrete definitions. ME/CFS exists on a scale that is a million shades from mild to severe, the labels we create are our own; an attempt to help us describe our experience and define the illness. And this is important to do, but we must remember that ME/CFS does not adhere to strict definitions. Each patient is unique and experiences some version of this, but patients do not go from mild straight to moderate, then straight to severe. There are a million states in between these categories. Let's not turn a communication tool that can be helpful into a reduction of the experience of having ME/CFS in the real world.

MILD BRAIN FOG

Mild brain fog doesn't cause the same cognitive symptoms as moderate or severe brain fog, as I will describe below, but patients with mild brain fog still experience cognitive issues which are likely stemming from the same root problem. So mild brain fog is very different from moderate and severe brain fog, but important to include as it is likely all the same problem to varying degrees of severity.

For me, looking back at my life with mild ME/CFS and mild brain fog, I had many cognitive issues. The most stark of which was a pretty severe loss of long and short term memory. It was as if my past was starting to be wiped clean, I simply could not access my memories and was often drawing a blank when people referred to experiences we had together; I couldn’t remember them at all. It was also much more difficult to remember anything new and at times I would look back at my days in school with a kind of awe that this same person was able to study and remember so much information for exams.

I also couldn’t think as well as I could before ME/CFS. I think if I took an IQ test my score would actually be markedly lower than before ME/CFS. I was less able to solve complex problems, less able to think deeply about issues, less able to concentrate, and less able to process ideas.

I would say roughly, that mild brain fog reduces cognitive function to about 70-80% of a person’s healthy mind.

So the term "brain fog" doesn’t really describe the symptoms of mild brain fog very well as there isn’t so much a feeling of "fog" as just impairment. But I think it should be included because it is very likely the same cognitive impairment caused by the same root cause, only not as severe.

MODERATE BRAIN FOG

Moderate brain fog feels like, well “ brain fog”. “Fog” is actually a very apt word and used by patients for a reason. Imagine all of your thoughts and feelings and picture a fog descending onto them, making them hard to see clearly. With moderate brain fog, you have thoughts and feelings/emotions, but they are hard to access in order to really think about them or feel them. It’s as if they are out there in front of you, but you just cannot reach them. And yes, this applies to thoughts as well as feelings/emotions. Thoughts and feelings are therefore reduced to abstract versions of what they actually are. They are still there, no doubt, because they will come back in full clarity at some other time in the future even if temporarily. But when you have moderate brain fog, most of the time you can see the outlines of the thought or feeling/emotion but your mind cannot access any of the details and has trouble processing thoughts or feelings/emotions to work through them or change how you see/feel them like your healthy self could. They are unreachable, vague, blurred versions of the full thoughts and feelings/emotions that are there in your mind. You can think and feel the general idea or feeling, but you cannot think or feel any details about it.

And this applies to ALL thoughts and feelings, not just some. So your whole mind feels incredibly dull. Where there should be a world full of ideas and thoughts and feelings and emotions, there are only these blurry shapes and you cannot access any of the intricacies of any of them.

This leads to a feeling of extreme dullness. Nothing you do can be done with as much depth or make you feel as much as you felt before ME/CFS. Your mind cannot process or feel as deeply, so anything you try to do, you won’t feel as much from it, or be able to think about it as well. For example, watching a movie with moderate brain fog, you won’t understand it as well, you won’t be able to follow the plot as well, you won’t feel the same height of emotion from it, you will feel much much less, and be able to follow it and process it much more poorly compared to your healthy self. Many movies will not be possible to follow or just too exhausting to try to follow when you have moderate brain fog. Or for some patients ALL movies/series may be too draining to try to watch and concentrate on.

I believe all ME/CFS patients say this is the worst symptom, because it is the symptom that makes you feel like you are not actually alive, yet you are. You are fully alive and aware experiencing this state of emptiness/dullness. Alive but not able to feel alive. Alive only to bear witness to a lack of life.

It varies in shape and form from patient to patient, but I would say that in general, with moderate brain fog, all thoughts and feelings are reduced to 5-10% of what they are when you have healthy mental cognition - depending on the severity of the brain fog. So picture the world that exists in your mind, both thoughts and feelings, and take away 95% of the details and nuances of all of those thoughts and feelings. Picture how dull that would feel. Picture how lifeless you would feel, how close to being dead.

This is a state that many ME/CFS patients live in every single day, all day. They are ghosts of their former selves.

SEVERE BRAIN FOG

Severe brain fog takes that 5-10% and reduces it to 0-1%. Yes, 0%. It can be so severe that you literally cannot think or feel ANYTHING. I have experienced it when i was at my most severe, frequently and often for days. It is the worst thing I have ever felt. I often call it a "thoughtless, feelingless void that is worse than anything I could ever have imagined". You are alive and completely conscious, and completely aware of yourself and how you feel, but your mind cannot think or feel anything. Let me say that again, you are alive and the only thing you feel is the lack of any thoughts or feelings/emotions. You cannot see outlines of thoughts or feelings in your mind like with moderate brain fog, there are no outlines left. it is like your mind and soul are dead but you are somehow still alive and fully aware and conscious bearing witness to this state as time slowly ticks by.

When I was at my worst, if I crashed once at any time during the day, I would wind up with "0% severe brain fog" for the rest of the day and would be stuck in that state until sleep reset my system. So crashing became a very serious thing for me. I put all my energy into not crashing so that I could have hours at night with mental clarity to think and feel and retreat into my imagination. If I crashed during the day, even once, I would wind up laying there at night with nothing in my mind or soul; No thoughts or feelings/emotions whatsoever.

There are no words to describe the horror of this feeling. I can imagine reading this and thinking that it might be a relief or a good experience like taking some kind of drug. But it is not the same. Certain drugs or alcohol dull your mind but not nearly to the same extent. They also dull your awareness at the same time and this combination of dulled cognition and dulled awareness can be pleasing to experience. ME/CFS patients are fully aware. Some drugs and alcohol also induce new feelings or ideas compared to your healthy state of mind even if they also dull your awareness. So brain fog is not remotely comparable to any recreational drug or alcohol. With severe brain fog, you are fully conscious and aware, your senses are not dulled or altered. You experience all of it with a sober mind, every painful excruciating minute of nothingness. Alive but devoid of everything that defines being alive to all healthy people. Without any thoughts or feelings, what is left? Who are we? What are we? Severe brain fog really feels like we are just bodies that are pumping blood (maybe poorly) and staying alive, but that’s it. Just bodies staying alive and nothing more.

Important Note:

i want to remind you that these states of mind are not permanent. I know this because the symptoms of brain fog change from day to day or week to week and often worsen temporarily during a crash but then later get better, even if only a little bit better. Furthermore, when patients experience any level of recovery, even a 5% recovery, their level of brain fog improves; Their cognitive functioning improves. And certain drugs make brain fog symptoms better like Ativan, even if only temporarily. This tells us that our minds and souls are still there, they are just not accessible due to problems caused by ME/CFS. But when we get better, when there is a cure or better treatments, our minds will return to us just as they were when we were healthy. And even if you are worried about brain damage, the brain is incredibly adaptive and can rewire itself, grow new connections, and heal. So please do not read this and feel like you will never have the same mind or heart that you once had. It is all still there, just waiting to be set free.

Love,
Whitney
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