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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  

Communication


Smartphones


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


me-cfs_wordboard_1r

Inside my "Websites" Folder


me-cfs_wordboard_2r

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.

me-cfs_remote_doorbell_2

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.

me-cfs_doorbell_1


me-cfs_doorbell_2


me-cfs_doorbell_3

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


me-cfs_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  

me-cfs_laser_pointer

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.

me-cfs_grabber

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.

me-cfs__remote_outlet

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  
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.

me-cfs_earmuffs

Earphones  
And
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  

me-cfs_earphones


me-cfs__sleep_machine

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.

me-cfs_noise_machine

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 it.at 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"

me-ME:CFS_mini_split

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  

me-cfs_air_purifier

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)

me-cfs_wooden_massager

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.

me-cfs_shiatsu_massager_1

Home Medic / All About Health Network / multiple other brands Shiatsu Kneading massager
Amazon   (not available)
ebay  
(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.

me-cfs_shiatsu_massager_2

me-cfs_stomach_massager

Ice


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  

me-cfs_ice_straps

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.

me-cfs_scalp_brush

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,
Whitney


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