Best ways to donate to ME/CFS Research  

Stacks Image 49

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:
Stacks Image 58
Stacks Image 60
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.

Stacks Image 107
Stacks Image 5868
Stacks Image 5870
Subscribe to my blog
By subscribing to my blog you get my blog posts sent to your email address so you don't need social media to keep up with my posts. I only send my blog posts, nothing more and you can unsubscribe anytime. By subscribing you also get to read my posts before anyone else.
Stacks Image 4148
Stacks Image 6051
Stacks Image 6127
Stacks Image 6131
Stacks Image 6135
Stacks Image 6139
Stacks Image 6143
Stacks Image 6147
Stacks Image 6151
Stacks Image 6155
Stacks Image 6159
Stacks Image 6163
Stacks Image 6167
Stacks Image 6171
Stacks Image 4797

Technology To Improve Quality Of Life

Let’s face it, treating ME/CFS is a complete mess and always has been. There are a few drugs that help a select group of patients a little bit like Abilify. There are drugs that help temporarily alleviate some of the symptoms for some patients like Ativan. And there are supplements that researchers think should help based on studies done on other patients and guess work in how it likely applies to ME/CFS. Like Turmeric. But there is no data to back it up with ME/CFS. The rest are drugs and supplements that ME/CFS patients have experimented on with themselves and reported what they think the drug/supplement did to them. These patients are often taking a lot of other drugs/supplements and the symptoms of ME/CFS fluctuate so there is no real evidence or science or certainty. Historically, anecdotal evidence like this can be very inaccurate. Remember bleeding sick people? Everyone thought it helped at the time.

So what we have is a very confusing and complicated landscape for patients trying to treat their illness - often by themselves. But there are other ways to help alleviate symptoms and improve quality of life. One of those is using technology. There is a plethora of gadgets that do all kinds of different things on the market today. Our culture is obsessed with technological gadgets and gizmos. And lucky for us, because we can benefit from many of them!

Taking full advantage of technology to help ME/CFS involves creative problem solving. As I have written previously, there is no manual for living with ME/CFS. We all have to figure out our own path that keeps us the healthiest and if we’re lucky makes us a bit better. So I encourage all of you to try to be open minded about the problems you’re facing and think creatively about what is out there that might help. I’ve done a lot of this and my health is infinitely better because of finding many gadgets that help me consume less energy, help my body function better, or help accomplish something that would otherwise be impossible.

I would like to share as many of these technological discoveries I have made with you as I can think of, with links to the products wherever possible. Lets’s start writing the pamphlets for living with ME/CFS right now. Hopefully this can be a resource that will help many of you.

I will separate this into sections organized by how the gadgets help.

Titles with an arrow are links to a place to purchase the product online  



Smart phones are obviously excellent tools for us to communicate if we can use them. We can connect to people through social media and forums, text or call friends and family from bed, keep up with news, etc

And there are many apps that can help with communication if you can only type a limited amount, which was the case for me.

Wordboard app  
This is an (unfortunately iOS only) alternate keyboard called Wordboard that when engaged by tapping the alternate keyboard key, replaces the keyboard with customizable buttons that when tapped, type out a phrase, sentence or paragraph/paragraphs. So you can create buttons for things you frequently need to communicate and you can even organize these buttons into folders. You could for example, create a "food" folder button that opens a keyboard full of buttons in that folder which could be all the things you eat regularly. So instead of typing the words out with all the specifics of how they need to be prepared (most of us have digestive issues and can only eat certain foods prepared a certain way), you can just tap the "food" folder then the button for whatever food you want/need. That’s two touches to your smartphone instead of 40 or hundreds. You could also use it for basic needs like "I need my blankets fixed/straightened out" or ‘I need help going to the bathroom" or "please close/open the curtains".

My Main Wordboard Keyboard


Inside my "Websites" Folder


Other apps

There are other apps that I used as well before Wordboard was available. I don’t know if they are available anymore I couldn’t find any online maybe someone can post in the comments if you know of one. You create pre written text messages that are saved in a list and when you open the app you just tap one to send. You can set them to either send automatically to one or more people or you can set them to put the text in a new text message with a blank send address. One of these apps literally saved me when I could no longer type enough every day to write out the food I needed. And since my meals were pre prepared and on a rotating schedule, making a list of them was easy. You can of course use an app like this for other needs as well.

If I discover an app like this or alternatives for other operating systems, I will update this post.

Text Replacement

Smartphones also now have a feature called "text replacement" as part of the operating system. You set up series of at least 3 letters that when typed in that sequence expand into any phrase you want . This takes more typing than Wordboard and you can’t format the text, it’s just one long paragraph or sentence. But I used this as well as soon as I learned about it. I had text replacements for everything I needed to type routinely.

I also used a trick to choose which lunch on my rotation I wanted for example, without having to have more than one text replacement. I typed out all of the things I ate for lunch with a) b) c) d) before each one, and then I’d just type the letter for the one I wanted. You can get creative with this idea and use it for other things too. When someone asked me a question, I had them write out the answers with a) b) c) etc so I could respond by just typing one letter instead fo writing it out.

All of these are must haves in my opinion for ME/CFS patients in case you need something and cannot type. Wordboard costs 20 dollars (one time purchase, no subscription) but it’s absolutely worth it. The programmed text apps are cheaper (if still around) and text replacement is free if you can type enough to use it. I highly recommend everyone with ME/CFS buy Wordboard and imagine what your needs will be if you become severe and program buttons and folders so you are ready If you suddenly are unable to type anymore. We all know how easy it is to fall off a cliff with ME/CFS and how uncertain our new limitations will be.

Remote Doorbell  
There are many of these on the market and they are a great way to call for help from your bedroom with a simple push of the button. You use batteries in the button so you can just keep it on your bed next to you, and the speaker for the bell sound either gets plugged into the wall (better because it won’t run out of batteries) or it runs on batteries if that works better for you for whatever reason.

Above is a link to my favorite remote door bell. It has long range, makes a loud noise, but most importantly the button is large and easy to push. The speaker gets plugged into the wall.


When I became extremely severe I had a very hard time pushing buttons. Its hard to explain why but that moment of feeling the click of the button and knowing what it was doing was too much for my brain to process in too little time. So this doorbell is especially useful due to the large button size because you can use a trick I came up with to trigger it without physically pushing the button and feeling that click with your finger. I put the button on my bed in a place it can remain permanently and is close to me but a bit above my normal arm reach area so I don’t accidentally set it off. I then fold up a hand towel into a small, thick square and put it on top. Next, I make two paper towel "logs" by rolling up paper towels in a tight roll secured with tape that is just taller than the height of the button to support the towel on either side of the button so it doesn’t get hit without intention. When I want to ring the bell, I put on earmuffs so I can’t hear the sound of the bell, which isolates me from the effect of the action, then I reach up with my arm bent at the elbow and push down with my elbow on the towel. (There are pictures of this setup on my blog version of this post) This way I can’t hear it, or feel any click and using my elbow is somehow a lot easier probably because our fingers have so many nerves and are also the common appendage for tasks. Our elbows are not associated with manipulating objects. This is a way of tricking my brain into allowing me to do something I otherwise would not be able to do.

For many years I could not use a cell phone and I still can’t push the remote door bell button with a finger. I can now use a cell phone if necessary, but for many years the door bell was the only way I could get help when I needed it. It was a life saver.




If you cannot speak

I haven’t been able to speak for 9 years. I’ve gone though many different phases during that time and have come up with different ways of communicating. At my worst, however, I couldn’t communicate at all. But here are some of the strategies I came up with.

Writing note cards

When I couldn’t talk or text I went through a phase where I could write a little bit by hand. But I could not tolerate human presence. So I developed a routine with my caregiver where she would sit outside my door while I wrote notes on little index cards. I would then lay them out for her on my bed, and turn around with my back to the door and put my earmuffs on and knock and hold still. She would come in, pick up the cards, and go back out in the hall to read them and write responses on new cards while I wrote more notes. Then she would wait until I knocked again, come in, put her responses on the bed, pick up my new cards, and we would repeat the routine. It was slow and cumbersome but we could have conversations this way.

Later I lost the ability to write. But during moments of adrenaline surges in my body I could write a few words, so I slowly wrote cards that were very generic and could be used to communicate anything. For example, I made cards that said things iike "More" and on the back side "Less", or "Don’t put this here please" and on the back, "put it here please", or "No" and on the back side "yes". I eventually wound up with a stack of these cards that I could put on objects or sometimes string together and put on things, then turn around and put on my earmuffs and let my caregivers in to see them inorder to communicate needs. I would highly advise anyone who is getting worse to write out a set of generic communication note cards like this and keep them in a ziplock bag in/near your bed so that you have them in case you loose the ability to write. If you can’t write anymore, you won’t be able to make them.

Some Example Note Cards


Scrabble Tiles

I also at one point got the idea of using scrabble tiles to spell out words and brief sentences. This worked for me for a time until I got sensitized to seeing the letters and could no longer look at them. But it was a great trick while I could use it.

Laser Pointer  
If you’re able to tolerate caregivers in your room and you are bedridden, a laser pointer is an excellent way to quickly show someone what you need help with. I used mine all the time. Pointing and gesturing with your hands is very ineffective and my caregivers would be walking all over the room trying to figure out what object I needed brought to me or moved. With the laser pointer, it was very quick. If I needed the curtains closed a bit I could just point it at the curtains and gesture a closing motion.

I attached the laser pointer to a retractable key chain holder like the ones maintenance workers often use. It holds the laser pointer at the end of a thin chain or string, and retracts it into a coil with a spring mechanism. So mine is hanging on the right side of the headboard of my bed in easy each and when I grab it, it pulls out connected to the string and I can aim it anywhere. Then it retracts back so it’s always hanging there in easy each and I don’t loose it.

Retractable keychain  


Accomplishing Tasks

Long Reach Grabber Tongs  

There are many "arm extender" grabbers on the market. They’re a pole about a meter long with a squeeze handle that closes tongs at the end so you can reach things from bed. I use mine all the time when something falls off the bed, or something is in the wrong place but reachable with the grabber. I keep it leaning up against the head of my bed. Some are easier to use than others though because the handle is the trigger for the tongs, so many of them are impossible to hold without squeezing and closing the tongs. Here is my favorite because it's the easiest one I found to hold and use.


Remote power on off switch  
Im in love with these. They are remotes that turn the power on/off to an outlet plug. They come with a remote with on/off buttons, and corresponding plugs you insert into the outlet and plug a device into. You can use them to remotely turn on/off anything that has a manual on/off switch. I use mine to control all the lights in my room. And a fan in the window that blows fresh air in my room in case of intense smells coming from the kitchen or to help regulate the temperature in my room. For a time I also had a white noise machine plugged into the remote so I could turn it on if there were disturbing noises outside like someone talking right outside my room. I also used it at night during a period when the hoards of crows that have taken over my town really bothered me and woke me up at 4am. Unfortunately, many devices have electronic on/off buttons so you can’t turn them on/off simply by cutting/connecting them to power. But anything with a manual power switch will work for these remotes. My favorite kind is linked below. It has five buttons on the remote to operate five different plugs/outlets/devices and the signal is strong and dependable. One push of the button always works.


Electronic Curtains

If you are bedridden and sensitive to light, they make remote controlled curtain open/closer rods. There are many versions available. Some come with curtains and others attach to your curtains. I bought one but haven’t installed it yet so I can’t recommend a brand, but this is something that I’m sure would help a lot of you.

Noise Isolation

I have many gizmos to isolate me from noises in my environment.

Active Noise Reduction Headphones

These can be useful but they tend to be designed to only block out certain frequencies and let the human voice through for example, which for me is the most difficult sound to process. So I don’t recommend these. They are also very expensive compared to better alternatives.

Earmuffs are passive, mechanical sound isolating headphones that use multiple layers of materials to block out sound. They block out a much more even, wide range of sounds than active electronic noise isolating headphones and they are very cheap. Look for earmuffs that are rated to "30dB attenuation" or more. My favotite pair is linked below and cost $20. I like them the best because unlike most earmuffs, they have a wire headband which can be bent so they don’t fit too tight and hurt after long periods of time. And earmuffs are made to fit tight because it helps block out more sound. But if they hurt you can’t use them. Just don’t make them too loose or they will loose effectiveness.


White Noise iPhone App  
I combine earmuffs with cheap earphones plugged into an iPod touch with an app called Sleep Machine that is unfortunately for iOS only. But I’m sure there are similar apps for other devices. Post in the comments if you know of a good one and I will add it here. The Sleep Machine app has tons of backgroundnoises you can choose from (including radome stuff like refrigerator hum), adjust volume for that specific noise and combine multiple noises. I use "Large Waterfall" combined with "White Noise 3". The waterfall is nice so that I’m hearing an organic sound and it contains random higher frequency noises that fluctuate which helps hide high frequency sounds that get in through the earmuffs. White noise is the sound you hear when an old TV isn’t getting reception, or in between radio stations. It is all frequencies playing at once. In the Sleep Machine app, they have 4 kinds of white noise. 1 is all frequencies evenly distributed, and 2-4 have increasingly more low frequencies. The waterfall sound doesn’t have a lot of low frequency sound, so when it is combined with "White Noise 3" it covers the whole audio spectrum with a rather pleasant sound that is at least partly organic. There are many other apps that have similar functionality. Just be careful not to play the white noise very loud. Sustained high volumes cause hearing damage. I keep the volume very low. It doesn’t take much when it is used in combination with earmuffs to block out most sound and garble what does get though as it gets mixed up with the white noise.

If you like the earphones I've linked to, you might want to buy a few pairs because they are cheap but not extremely durable.

If you are too sensitive to sound to use white noise you can combine earmuffs with earplugs, but the pressure from the earmuffs tends to make this uncomfortable so try soft earplugs.

You can also use the earbuds I have a link to above with no white noise playing. They create a seal in your ears that is more comfortable than earplugs because they don’t enter your ear canal very deeply. But they still help block out more noise because they create a second seal right in your ear. You could even cut the cable off if you’re not using white noise with them.

Unfortunately this app is only available for iOS, if I discover similar apps for other platforms I will add them here.

Noise Machine apps

Sleep Machine for iOS  



Mechanical Noise Machine  
A mechanical noise machine is a white noise generator that creates organic white noise with spinning fans inside a small round enclosure with adjustable vents to change the nature of the sound. For years there has only been one model on the market, and I personally found it annoying because I have excellent hearing and in addition to white noise it creates a faint howling sound that drives me nuts. But many people love these. They are commonly used in massage or acupuncture offices in loud neighborhoods.


New Model Mechanical Noise Machine  
A new version I haven’t heard that maybe doesn’t make the subtle whistling sound but I don’t know. It is much more expensive and comes with a mobile app to adjust the sound

Room Temperature

A/C + Heater units with remote

ME/CFS patients are very sensitive to ambient temperature because our bodies can’t regulate our body temperature very well (and I’m guessing we also can’t regulate our brain temperature properly but that’s just my guess based on my personal experience). I get cold or hot very easily and getting hot really makes me feel bad. If you can afford it, the best solution is a new kind of combined A/C and heater called a "mini split". The part of it that gets installed in your wall is only about a foot in depth and only consists of vents and tubes. The big machine part that does the heating and cooling and makes tons of noise is separate and you can put it outside far enough away that you don’t hear all. I got one of these installed this year and I absolutely love it. Mine came with a remote, and I can set the temperature and just leave it. Regardless of the season or temperature outside, it maintains the temperature I set it to in my room. In the winter it heats, and in the summer it cools. I don’t have to think about it or struggle to get my room the right temperature. It also has different fan settings. I set mine to the lowest one, and to aim the air upwards, so it is almost completely silent and I feel no wind or "breeze". It just maintains room temperature in the background without me noticing anything. And since it has a remote I constantly adjust the temperature for my whacky body that gets cold and hot back and forth. Make sure to get one with a remote, and a laser remote is best not an iOS app because you could get worse and not be able to use your phone.

A/C Heater "Mini Split"  
The model I have is called "Mitsubishi M-Series - 9k BTU Cooling + Heating - H2i Floor Mounted Air Conditioning System - 28.2 SEER"


Before this new unit, I just had a heater and during the summer I had to come up with routines to have my caregivers open the outside sliding glass door to let cool air in at night for a period of time which was always difficult and a huge source of stress because I can’t sleep when it’s hot in my room (or think or function).

I also used a fan in my window that pushes outside air in which is controlled with my outlet on/off remote which I mentioned earlier.

Air Quality

Air Purifiers

Air purifiers have been reported to help many patients with ME/CFS and I think they are generally just a good precaution given all the indoor pollutants we are exposed to and how sensitive our bodies are. There are many air purifiers on the market, many with wild claims about effectiveness. My father, Ron Davis and I both like the air purifiers made by the company Blue Air. They use some unique technology that "electrically charges particles making them sticky" so they catch in the filter more easily. This lets them use lower density filters which means the fan doesn’t have to work as hard, making them virtually silent on the lowest setting. I personally tested mine during the wildfires in California in 2020 when the air was filled with smoke. My lungs reacted to it terribly I could hardly breath. One day with a Blue Air 411+ running on medium in my room and I could breath again. After a few days my lungs were back to normal. So this is the unit I would recommend. I now leave it on low and I don’t even notice the sound it makes it’s so quiet.

Air Purifier
Blue Air 411+  

Company Website for more information  


Gastroparesis / Stomach Issues

I have learned many tricks to help with gastroparesis over the years and will write a seperate post about it so people with stomach issues don’t miss it. I’ll keep this about technology.

Stomach Massagers

Stomach massage of all kinds has been a life saver for me literally. It helps physically move the stomach and also stimulates the nerves all around the stomach and GI which are overreacting. Massage calms them down, relieves symptoms and improves functionality. This can be done by hand by a carebigiver which I will write about in a separate post. But I’ve found many gadgets that allowed me to stop depending on my caregivevers to massage my stomach all the time. It also gave me more independence and the ability to have massage done anytime on my own, and for a longer period of time because gadgets don’t get tired.

Wooden Massage Roller  
This is the simplest thing you could buy. A couple wooden wheels with a handle. You just wheel it around on your stomach in whatever direction feels the best, focusing on areas that cause your stomach or intestines to make noises (noises mean movement).. But if you want to be more technically therapeutic it is best to move in a circle in a clockwise direction (if you were facing your stomach looking down on yourself). So from your right rib to your left, then down, then acrosss your lower abdomen below your belly button, then up, then from right rib to left again. You can go in smaller or bigger circles, dig in under your ribs, its all fair game. This is the cheapest gizmo but also the least affective and requires work on your part which limits the amount of time you can use it and could also cause you to use too much energy. This is where electronic Shiatsu massagers come in. (I haven’t tried the model I linked to above, but it’s the closest I could find to the size of mine, small is good)


Electronic Shiatsu Massagers.

There are many of these on the market. There could be others I haven’t tried that are equally beneficial or better. But these are the two I have used for the last 5 years and probably saved my life. They each have very different movement and accomplish different things. Which is solely based on my experience, but I will explain the best way to use each based on that rather extensive experience. I experimented a lot with them.

Zyllion Shiatsu massager  

This massager has two rotating sets of globe shaped massagers that each move in a circle, so there are 2 sets of globes moving in a circle next to each other like a figure 8 shape but not connected in the middle. After much experimentation, I found that this massager does a good job of simulating stomach movement but doesn’t stimulate the nerves very well. So I used to use it after food intake or when my stomach felt full, to physically move my stomach. Everyone’s body shape and size is different, but you can use this in many ways. Horizontally under your ribs, vertically (parallel with your body) right under your ribs, or if it’s too big for you, you can just put one of the rotating massagers right under your ribs. I found it’s important to get it as close to your ribs as possible without touching them so that it reaches the stomach. You can either place it on top of you while lying on your back, or for a deeper massage, you can put it on the bed and lie down on it stomach facing down. It comes with optional heat, which I recommend never using. Heat makes my stomach worse.

From my experience it is best to use this massager first to move your stomach, then use the next one to stimulate the nerves around your stomach to clear away that full feeling.


Home Medic / All About Health Network / multiple other brands Shiatsu Kneading massager
Amazon   (not available)
(When this eBay for sale ad expires just search for the same model, there are many for sale on eBay I believe)

This massager is made in China and over the years has been imported and sold under various brand names. The name I’m currently being is "All About Health Network". It can be very hard to find, and it’s expensive (about 350$ but 50$ on eBay right now) but it is absolutely the best massager for calming the nerves in your whole GI system. It has a strong motor, and a perfect motion with perfect distance between the two "kneaders" so that it pinches the skin together a tiny bit when they come together, pulling your organs together internally. Others I have tried are too far apart or have inferior motion, and don’t have this affect and so don’t work as well. Maybe someone can do some digging and post a link to units available elsewhere on the internet in the comments.




Ice helps my stomach function better. Heat makes it worse. Over the years since discovering this, I have used ice on my stomach to varying degrees. At my worst I had to have it on my stomach anytime my food pump was running. I am now able to run the food pump without ice. I use ice on my stomach when I get syringes full of meds injected into my stomach and upper intestine which is extremely uncomfortable. I do this because I always have and I don’t know what would happen if I got the injections without ice. My stomach also becomes sensitive after a bowel movement, so I strap ice onto my stomach in the bathroom so I can be upright with it on. Then when I return to bed, I take off the straps and put it on my stomach on top of 3 layers of paper towels to lessen the cold and keep my skin from getting frostbite. The exact brand of straps I use aren’t currently available, but here is a google shopping search for the same kind. It’s an "8 inch neoprene waist trimmer"

Ice Strap  


Scalp Health

I don’t know if this is a common symptom, but ME/CFS has made my scalp very unhappy. When I was extremely severe and couldn’t wash my hair it was a disgusting nightmare of infection and dandruff until I finally managed to shave it with an electric razor in little 2 square inch sections once every few days when I had an adrenaline rush of some kind.

Shampoo Brush  
I’m now able to wash my hair and face while in the bathroom, and I use a shampoo brush similar to the one in the link below (just make sure it doesn’t have sharp bristle points from bad plastic molding). Using this witth shampoo in you hair helps remove skin and clean your scalp. My scalp is so much healthier now with it.


Fragrance Free Shampoo

If you use dandruff shampoo, a little known secret is that you can’t use it everyday. It works by changing your scalp, so if you use it everyday your scalp adjusts to it and it stops working. You have to "keep your skin guessing". I was told to use it once every 3-4 days so once a week. I alternate between an unscented dandruff shampoo and a regular unscented shampoo and this is my favorite brand. They are free of many commonly used chemicals and seem good for my scalp. I recommend not bothering with conditioner but this company makes one as well.

"Free And Clear" Brand Dandruff Shampoo  

"Free And Clear" Brand Regular Shampoo  

Oral Health

If you are severe and cannot brush your teeth, a simple trick that might be easier is to rub the front of your teeth with a paper towel. I find the best way is to create a roll that is 4 paper towels thick and rub this up and down the entire length of my teeth, up into my gums. This is good because it molds to your teeth and gently massages your gums. You can wrap paper towels around a finger to get your molars. The inside of your teeth isn’t as important because it gets cleaned by your tongue but you can try this there as well.

This is also a great alternative to tooth brushing if you have severe gastroparesis and brushing hurts your stomach because the paper towel absorbs everything. Nothing out of the ordinary gets down into your stomach.

Electric Toothbrush

This is obvious, but not only do they clean better, they also require much less work because you just hold them in place. If you get a Sonicare electronic toothbrush I highly recommend using the "sensitive" brushes which are softer on your gums and also more effective.

Sonicare Electric Toothbrush  

Sonicare sensitive brush heads  

Water Jet Flosser  
You can also get water jet flosser gadgets that squirt a narrow stream of water to flush out plaque and they are supposed to work much better than flossing and could be easier to use as well.

That’s it for now. I hope some of this helps you!

With love,

to get my newest blog post sent to your email address
Only blog posts, nothing else. Unsubscribe anytime.