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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Sensing Your Energy Limits

It is important for all ME/CFS patients to do as much as possible to avoid crashing and going over your energy limits. Crashing doesn’t just make you temporarily worse, it permanently lowers your energy limit. Engaging in a lifestyle of pushing yourself past your limits and repeating cycles of crashing and recovering, crashing and recovering, in order to live what you perceive to be a better life, or even to do things that seem necessary, is not sustainable. Your energy limit will lower every time you crash. You will soon lose the ability to do the things you were once crashing to do and you will then crash from doing even less. Soon your life will be much more limited and you will still be pushing yourself and crashing. If you continue this process, your energy limit will continue to go down indefinitely. You cannot will yourself to overcome your limits, it is part of having ME/CFS and it is not your fault.

It is better to place limits on yourself than to wait for them to be imposed on you by the illness. This way your limits won't be going down constantly; you will be living in harmony with ME/CFS and your activity level will be sustainable. Learn to enjoy what you are capable of doing without crashing instead of being forced to do less by becoming more severely ill. You will actually be able to do more in the future this way, in many cases much more. Because when you get worse from crashing, your physical limit keeps going down. Eventually you will crash from doing things that were once very easy for you to do. If you stay within your limits you will maintain a higher energy limit and ultimately be able to be more active.

For example, you might push yourself to the point of crashing in order to stay at a party for a whole 5 hours. Because you are crashing, your limits will get lower. Soon you will crash after only 4 hours, then 3, and at some point you won’t be able to go to a party at all. Instead, if you leave the party after 3 or 4 hours before you start to get worn out (and maybe be less physically active at the party as well), you can maintain this and continue going to those parties long term. I’m using the example of a party so this makes sense to mild patients who are just beginning to understand that they will have to give up some aspects of their lives. But this applies to everything as the illness gets worse: being upright and active doing chores around the house, cooking, being out of your room talking to people, showering, sitting up in bed, brushing your teeth, simply being in the presence of people, etc.

Of course, some people get worse without crashing, which was the case for me, but for most ME/CFS patients, if you stay within your limits you can maintain a fairly stable life.

It takes time being sick and making mistakes and learning from them, but you can get to a point where you know your body well enough to avoid most crashes.

The first and easiest method is to observe patterns in your life and remember or record what you did when you crashed. Then the next time, do less. How many times did you walk around the block? How long did you spend at the grocery store or talking with a friend? How far did you walk from your bed? How much time did you spend on your phone? How long were you sitting up? What did your caregivers do in your room? What were you thinking about? How long were you thinking about it? What did you look at and for how long? etc. Oftentimes you can figure out physical limits and sort of put yellow caution tape around the world you live in to avoid crashing from things you know from experience are past your limits. Don’t do the same thing over and over expecting a different result. Learn from every crash and adjust that taped-off limit in your mind. If you do this, you can develop a well-constructed life inside your caution tape called a routine that keeps you from crashing.

Routines are ways of doing things at certain times that keep you within this caution taped area, so that if you adhere to them you know you won’t crash. The stability and security this gives you is why routines are so important for ME/CFS patients. Your whole day should follow a routine as much as possible. For a mild patient, a routine might be how far you can walk or for how long, how long you can remain standing, how out of breath you can get before you need to stop and take a breath, etc. For a moderate patient, your routine might be things like what you cook and how, how many and which chores you do per day, how much you do in addition to an outing like going to the grocery store, etc. For a severe patient, your routine will be much more strict. You will have to do specific activities in specific ways at specific times and not do more or stray from the way you do them unless you are forced to.

If you don’t create a routine, you are constantly being active until you hit your limit and crash. A routine may feel restrictive, limiting and un-spontaneous - and it is. But you will soon learn that it is better to give up spontaneity to be able to engage in more activities freely without getting worse and losing your ability to do things you once could. This in itself is a kind of freedom. It’s not the same freedom of choice that healthy people experience, but it is freedom from the consequences this illness imposes on you, which there is no getting away from. There is great peace in following a routine.

Another way to avoid crashing takes more practice, time being sick, getting to know your body, how it reacts to stimulus, and what happens to your body when you crash. You can learn to sense your energy limits and stop what you are doing if you sense you are going to crash or don’t even do something at all when you sense that it will make you crash.

I do this by pre visualizing every single thing I do (except for mundane things I do unconsciously and know won’t cause a crash, for example, at my current state of health scratching an itch, though when I was more severe there were times this took pre visualizing as well). I visualize performing every action before doing it and it only takes a fraction of a second for me at this point. When I imagine myself doing something in my mind, I get a stress reaction if it is something that will make me crash. I get a feeling in my mind that is sort of light-headed, weak and foggy. There is uncertainty about performing the action. This feeling tells me it will make me crash so I don’t do it. If it’s something I am capable of doing without crashing, the feeling I get when I pre visualize it is one of empowerment and a mild adrenaline rush.

Start your journey with ME/CFS by creating yellow caution tape boundaries in your life. Once this feels stable and you have created a routine around it, practice pre visualizing. I have a strong imagination so it has always been easy for me, but you all can learn to do it. Begin with things you know will make you crash. Pre visualize the activity and try to pick up on how it will feel and affect your body. Then try pre visualizing something you know you are capable of doing and try to feel the difference. You can learn how your body will react to activities this way. Then try something you are slightly uncertain about. It might take you 5 minutes at first to pre visualize the activity and pick up a feeling from it. That’s ok, in time it will become automatic - part of the way you think and move. You will become an ME/CFS Jedi and be able to feel what will make you crash in the world around you and avoid it. You will love the control and peace this brings you.

This is how we fight back against the ME/CFS monster and put it back in its cage where it belongs.

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