NOTE: I am not a medical professional. I am another patient passing on the resources and information I have found helpful along with links and citations.
The American Myalgic Encephalomyelitis and
Chronic Fatigue Syndrome Society on treatment: https://ammes.org/treatment-overview/
This is the most important thing, and the hardest to do.
TAKE BREAKS. For some of us that is every couple of minutes, for others it might be every hour. Set a timer if you need to. Treat your brain and anything else that gets tired like a broken ankle. Don’t ever try to run on it. The metaphor is you walk a couple steps, rest, repeat. Listen to your body and stop before you are tired, or worse in trouble. There is a delay on the crash, so keep well away from the danger of one.
Dr. Bonilla at Stanford also says that if you start feeling better you should still pace as if you were still feeling worse for at least TWO MONTHS. I learned the hard way and overdid it at Christmas 2019 because I was feeling so much better and am just now getting back to where I was (7/2020). Resist the temptation.
Watch for your warning signs. By the time you feel really tired or sore it's probably too late and you will crash (PEM). For me the early signs are tight-skinned, sunburnt feeling on my face, and/or feeling like noises are to loud. Pay close attention to your body, brain, and emotions.
NEVER "PUSH THROUGH". Every time you push too hard and crash, you can make yourself worse overall. In my case (and many others) a single "push through" took it from a mild case to severe (bedridden). You don't want to go there. Regular pushing through will generally cause a steady decline. There isn't a study on this, but the cfs clinics generally accept it as true, and I have watched many people decline this way in real time, and heard the stories of people who declined this way.
The Spoon theory of energy use says you have a certain amount of "spoons" a day and guides how many "spoons" different tasks take. A useful model for thinking about activities. It does not talk about spacing those activities out with rest though, which is crucial in ME/CFS.
If you are frustrated by your current level of activity and tempted to “push it” instead of resting and pacing, imagine how frustrated you would be if you got worse and could do even less. Imagine your worst day becoming your best day... or worse.
Pharmaceuticals should only be used when prescribed by a doctor. I include this information to add my own take on it and to give you something to research or ask your doctor about.
Stanford's CFS/ME treatments that I have used:
Low Dose Abilify (2mg) before bed. I started at .5 for two weeks, then 1mg for two weeks, then 1.5, then up to 2mg.
Dr. Bonilla at Stanford is the most hopeful about this drug out of everything Stanford uses. He says it helps the most people with the least side effects. It really gave me my brain back. Brain fog is gone unless I have PEM. I was scared to try it at first because I looked it up and it is actually an anti-psychotic with potentially bad side effects. What they explained to me that made me decide to try it was that the dosage for anti-psychotic use is 50-80mg, while we take only up to 2mg. At that dose risks of side effects are minimal, though weight gain can be one. I take green tea extract and raspberry leaf extract to help offset that.
* There is now a yet unpublished non double blind study by Stanford on severe ME patients that showed very promising results. Video update on that research here. https://www.youtube.com/watch?v=sOQwwpRdVE0
Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole (Journal of Translational Medicine (2/3/2021)
Low Dose Naltrexone (starting at 1.5mg at bedtime, gradual ramp-up to 4.5).
Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment (study published in Frontiers in Immunology)
The first time I tried this I took them during the day I reacted badly, and stopped, but now I take them before bed and it’s working really well. Jumping to 3mg felt weird, so I took 1 and a half of the 1.5 mg pill for a week first, then ramped up to 2 pills (3mg without a problem). Going to 4.5 made me feel bad again, so Doctor Bonilla at Stanford lowered my dose is 3mg and that seems to be good.
Valcyclovir 1000- 3000 mg a day (lowest effective dose) This can be hard on your liver and kidneys. It's also only effective for some people. It really helped me personally and they keep running tests on my kidney and liver function and I'm fine, but this is really not for everyone. It has zero effect on some people.
Celecoxib 100mg 2 times a day. An anti-inflammatory. I am not sure how much it helped, but I did notice a drop in energy and increase in soreness when I went off of it and before I tried the next new med (below). *note that you should not take other anti-inflammatories like ibuprofen with this (according to the pharmacist).
Ketotifen (.5 ramping to 1mg) They had me go off the Celecoxib, which I think helped some and go onto this, which seems to be helping way more. I have noticed a definite energy level rise. It apparently helps stabilize mast cells and recent research is finding that “individuals diagnosed with moderate to severe ME have been noted to have higher amounts of dysfunctional mast cells in circulation” https://me-pedia.org/wiki/Mast_cell_activation_syndrome
I was told to take it before bed because it can cause drowsiness and it improved my sleep.
Brigham and Women’s Hospital in Boston is also using another medication with some success, seen in this video: https://youtu.be/FMaKfv8peww (mentioned at 23 min in). Pyridostigmine. Stanford finds this has too many side effects to recommend.
My (very drugs-with-side-effects careful) GP doctor prescribed Trazodone (50mg) before bed to help me stay asleep and suggested 5mg melatonin for sleep as well. It worked. Other cfs/me patients I correspond with have taken it for the same reason and it seems to work for most of them.
For the horrific Headaches
Sumatriptan (25mg) My GP doctor prescribed this for as-needed use on both cluster headaches (the ice-pick behind one eye that makes your eye/nose water and light hurts) and migraines (the light-sensitive, feel like you are going to throw up ones). She cautions that you should try not to use more than one of these a week whatever the indications say.
Also a note if you are on estrogen birth control: it can cause migraines according to my neurologist.
I find always wearing sunglasses outdoors in any weather and adding a hat if it is bright helps avoid them too. Also dimming computer/tablet/phone screens in the dark. .
CFS/ME Researched Protocol:
Research on treatment protocol: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515016/
My acupuncturist tried this protocol and I noticed an energy boost.
These are the ones I am on. If I stop taking them I feel worse.
One of Dr. Chia’s (Infectious disease Dr., specialist in CFS) main treatments for CFS patients who started with a gastrointestinal trigger and have gastrointestinal issues is the Equilibrant supplement he created https://equilibranthealth.com
You start with 1/8th of a pill, with food once a day. At first your stomach reacts to it badly. You build to 1/8 2 times a day, then ¼ two times, then ¼ three times (always with food and best to lay down after taking it and be still). It tastes nasty, especially when you have to split the pill. Way easier when you get up to whole pills.
Eventually the goal is to get to 6 pills a day (two morning, noon and night). After you adjust you don’t even need to take them with meals. Now I take them with no issues whatsoever and I have no more gastrointestinal problems. I think my energy increased as well. These are pricey but they made a huge difference for me.
Probiotics (hyperbiotics pro-15) *very important, since our microbiome is off. https://www.sciencedaily.com/releases/2017/04/170426092351.htm
Magnesium 200mg (Finest Nutrition brand)
Dr. Bonilla at Stanford and my doctor recommended. Dr. Bonilla suggests taking 200mg before bed for best effect. https://www.ncbi.nlm.nih.gov/pubmed/1672392
*L-Carnitine extra strength 1000mg (Bri Nutrition brand)
Improves Mitochondrial function: Suggested by Dr. Chia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905823/
Vitamin D (2000iu) (nature’s bounty brand)
My doctor suggested
B Complex with vitamin C energy metabolism (Finest Nutrition brand)
Energy booster, my Doctor suggested
Vitamin B-12 (Jarrow Formulas chewable)
Important energy booster my Doctor Suggested
Lysine 500mg (Finest Nutrition brand)
(for immune health)
Iron (Floradix). This was suggested by my acupuncturist. If I start getting night sweats I take it and they go away.
Elysium (2x Nicotinamide Riboside 250mg + Pterostilbene +)
aids mitochondrial function https://www.sciencedirect.com/science/article/abs/pii/S0962892414000634
Methylcobalamin (Methyl B12) 5000 mcg ( Jarrow Formulas)
I honestly forget which doctor recommended this, but it was a doctor.
NAC (Doctor’s best brand) Dr. Chia recommended
Tumeric Ginger supplements
Doctor Recommended (My Doctor and also Dr. Bonilla at Stanford) for supporting brain function.
Ubiquinol absorb QH- 200mg (Jarrow Formulas) Brand is important here.
Recommended by Dr. Chia.
My Doctor recommended for headaches
Note: For best absorption take Iron and Vitamin C and B together, and separately take D and Magnesium and Calcium together. I take the C, B vitamins together in the morning and evening with the Elysium, and the D and magnesium in the middle of the day with the NAC (which has similar function to Elysium.
Stanford recommends the Mediterranean diet .https://www.healthline.com/nutrition/mediterranean-diet-meal-plan For me this didn't work. I was a pescatarian for years, but since I got sick I was craving beef like crazy. I felt bad if I didn't get red meat a couple times a week. Otherwise the recommendation from Stanford and my doctor is healthy, lean food, dark greens, and pickled and active things like sauerkraut and live culture pickles, live culture yogurt, Kombucha, etc. Also beef bone broth was recommended by my doctor and while I never liked it before my body decided this was the food of the gods.
Many people get an intolerance for alcohol and/or gluten. At first I could only drink clear spirits if any alcohol, but now I can drink wine again. I still can't drink beer without side effects (gut pain, body aches) any more. Keeping alcohol intake minimal is recommended by most doctors, whether you have CFS/ME or not. I get side effects if I have more than 1-2 drinks.
Lots of water is important (keeps blood volume up, digestion going strong). I have found that a 1/4 juice, 3/4 water mix of Lemon Ginger Echinacea juice is my friend. My digestion gets unhappy without it and my doctor says the lemon is good for the liver, which is working extra hard with all the medications.
Also recommended if you are having any tough stool (poop) is to have more water, apricots and prunes.
For Otherostatic Intollerance:
Orthostatic Intolerance is when we get lightheaded or feel worse when standing because our hearts don't get the blood up to our head well enough. The goal is to keep blood from pooling in the legs and keep it up in the head.
Compression Tights This helps keep blood from pooling in the legs when we stand, keeps more of it towards the head so we don't get dizzy.
Apropos of that and supporting my abdomen sitting up, my PT and Doctor suggested trying a medical corset to both bind (to keep blood above the heart) and support. Days that I need to sit up for any length of time, this really helps. You need to have one fitted to you though. You can get a nasty beige velcro one from a medical website, but I got a pretty, more comfortable one at Dark Garden, properly fitted and adjusted to me. They carry ones that are medically approved and will write for insurance claims if your doctor gives a prescription. Things like spanx or whatever might help in this way too. The principle is to squeeze the areas under the heart to keep the blood up at the brain.
Put Your Feet Up
This also helps with orthostatic intolerance. The more you can keep your feet up and your torso tilted back as a resting position the better. I am in a wheelchair and was able to get one with a recline and raising footrest. This means I can stay out longer because I can get into a fully resting position, or move around in a position I can maintain longer.
Drink lots of liquids
This keeps your blood volume up.
Talk to your doctor about salt.
Dealing with Anxiety and Depression
If you are experiencing suicidal thoughts, anxiety or depression please seek professional help.
I know coping with depression and anxiety can be extra hard when your coping mechanisms may no longer be available to you (a workout, dancing, a walk, hiking, playing a sport, even painting or sculpting). I get that. You have to find new ones. For me being surrounded with plants really helps.
It's also hard when your friends and family don't take you seriously. Make that your first priority. Make sure people understand exactly what you are going through. Show them the TED talk (video section), or better the UNREST movie. Show them the CDC definition of ME/CFS. Insist. Ask for help. If you have a support network on your side everything is more bearable. The same goes double for doctors (see doctors section).
My own advice is to appreciate the little things and the things you can do like your life depends on it, because it does. The more you focus on the positive, the more positive you can see.
Stimulants (Ritalian, etc)
There are some doctors who recommend this, but not, tellingly the top CFS/ME clinics like Stanford. Oftentimes they give you short term boosts in "false" energy which make you more active than you should be for your energy envelope and then cause crashes.
I haven't asked why, but again the top CFS/ME clinics are not using them.
About Graded Exercise Therapy and Cognitive Behavioral Therapy (GET and CBT) *NOT SAFE*
These are dangerous treatments that came out of the deeply flawed PACE study and are unfortunately still common, especially in the UK. They are based on the now debunked idea that ME/CFS was a psychological condition (or psychosomatic) instead of a medical one. An theory that has been disproven again and again. The idea was that patients had some trauma that made them afraid of excercise, but with graded excercise to build their muscles back up and cognitive behavioral therapy to convince them there is nothing wrong with them they will be fine. This approach has caused until harm to thousands of ME/CFS patients. So many pushed themselves to exercise and got worse, or committed suicide because they were told by doctors, friends and family that it was all in their heads.
If a doctor tells you they will treat you with these methods it lets you know they are not up on current research and they believe that you have a psychological condition, not a medical one. Either show them the following links and convince them, or get another doctor.
Note the CDC does not include GET or CBT in their treatments
NPR on the story of the PACE study and its damage, and the damage of exercise for ME/CFS patients
Statnews article (very approachable article about the PACE study): Bad science mislead millions with Chronic Fatigue Syndrome. Here's how we fought back" (9/21/2016)
The Conversation How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma (March 22, 2017)
MEpedia serious info dump on the PACE trial with citations.
So... if a doctor throws this stuff at you, please do not accept it and seek out real treatment.
I will note that CBT for things like better sleep or better emotional state is fine, but not as treatment for ME/CFS as a whole, but have your guard up if they mention CBT at all.
This is a really hard step. Many CFS speciallists have suggested that it's the most active people who get this the worst. I was a competitive gymnast, then a martial artist, dancer and circus performer. I am used to being the most physically capable, strong, flexible, adventurous person in the room.
It was a HUGE identity shift to get a wheelchair. I realized I needed one when I had a good enough day to walk early on in my illness and I was crossing the street to get to my car from the store and I almost collapsed in the street. I had been walking, then resting on a llittle stool, then walking, resting. I thought I could make it around like that. Looking back, what was I thinking? The near collapse made it obvious that this was dangerous and foolish.
I have heard from others who literally spend 30 years in bed not leaving the house who would be able to leave it if they got a wheelchair, but because they can walk a little they think they don't need one. Not true. If you can't safely walk a block or even a mile, you need a chair.
When I got my chair I was able to go to Disneyland immeadiately. I could see family on the east coast, and I even traveled to Morocco and Japan. I got a big piece of my life back. It is a hard adjustment to be seen in public as disabled, but you get so much more life back in a way that is safer from crashes.
It's hard for people to understand that not everyone in a wheelchair isn't paralyzed below the waist. It turns out most people in wheelchairs can walk short distances. Personally I have gotten better enough that I can walk normally around the house, but not yet better enough to leave the house without the wheelchair. This can be an adjustment for the family as well as you, but it also sometimes makes it more real to those around you that the condition is a serious one. If you can't safely walk far, you should consider it.
I have a lot of detail about all things wheelchair on my wheelchair travel blog here.
Getting a wheelchair:
If you are getting a wheelchair, you need a powered wheelchair because your arms are going to get just as tired as your legs otherwise. If you are anywhere near where I was function-wise, you probably need one with a recline and foot-rest because it will allow you to rest when you are out. For many of us just holding ourselves upright is a workout and raising the feet helps with orthostatic intolerance.
Insurance sucks. I have great insurance. I have a doctor fully prepared to back me up. Even with that, in the very best case scenario it would have taken me a minimum of 3 months, and more likely a year to get my wheelchair through insurance. You need a doctor recommendation with an extra doctor's appointment just for that. Then insurance company sends out two specialists (a PT and a "lifestyle evaluator") to your house to decide for you what you need. Keep in mind that the insurance companies don't really recognize CFS/ME. Then if you have really good insurance they pay 80-90% of the model they think you need.
Solution: EBAY. I got my wheelchair used with only 20 miles on it on EBAY for less than the deductible for my insurance would have been. I've since checked back and this is typical. They raise the prices for insurance buyers, but as soon as a model has been on the floor too long it sells for 20% of the full price. Used ones are even cheaper.
If you get a large power chair you may need a wheelchair van. Transporting a chair is hard without one. Again, used options are your best bet.
If you are okay with a folding power chair (less battery, less comfortable, but way more versatile) you can put that in your trunk! There are some folding power chairs like the Falcon that recline and you can add a headrest and raisable foot rests to. That one is FDA approved so you will have better chances with insurance. It is less comfortable than a larger chair, but you can fold it up and put in in the trunk and easily use it in the house and you won't need a wheelchair van.
I can't get my wheelchair into the house, but until I had the wheelchair van I stored it in the garage. Then I moved it to the van. I can get to the van, and then I can use the chair out in the world.
Around the house I have a chair in every room, and a rolling desk chair in the kitchen so I can cook sitting down.
I have a wheelchair travel bog with tips and information here.
Will I ever get better?
There is no way to know. Thankfully, in the past few years research has jumped significantly. The NIH is doing a massive study. Harvard and Columbia have joined Stanford and Brigham and Women's and opened research centers, things are moving. The chances that they will find more treatments and even someday a cure is rising every day.
Huge amounts of money and focus is going into “long covid” research, and that may be a silver lining for us, since it looks a lot like it is ME/CFS or closely related (see covid section).
Some people get better on their own, and doctors don't know why, though it's usually in the first couple years (I think people who paced and rested well and didn't push it). Some people go in and out of remission. I have gradually improved through careful pacing and a cocktail of prescription drugs and supplements. Every little thing has helped, but while I'm way better than I was, I'm far from cured. We just can't know.
The only thing we know is that pushing it makes it worse, stress makes it worse, and new viral infections can make it worse. So be careful and PACE YOURSELF.
Hang in there. Appreciate the little things and the things you can do like your life depends on it, because it does. Treat your body, brain, and emotions like a broken ankle you have to be careful of so it will heal. Breathe through the frustration and take one step at a time.
Educate your friends, family and doctors so they understand what you are going through (watching UNREST is great if you can convince people, but the TED talk in the video section is a very small ask and a good place to start). Getting a support network behind you is critical.
Find a doctor who believes you and has your back. The few CFS/ME specialist clinics have long wait lists, so get referred ASAP for an appointment. It could literally take years. In the meantime work with your doctor and pace.
Be patient with yourself. This is a marathon, not a sprint. It's a patience marathon. You have to hold back, take everything carefully and slowly, pace and rest. You may want to do all the things when you have a good day, but hold back and remember to pace so you don't have two weeks of bad and overall a worse condition to pay for that good day. If you do, your chances of having more good days goes up. Be careful, and good luck.