I did it! I beat CFS! After suffering from Chronic Fatigue Syndrome (CFS) for 28 years, I believe I’m finally healed. I know, I should be a little cautious about saying that because when a person with CFS starts feeling better, the crushing fatigue usually rushes right back upon them.
However, for a year now, I haven’t experienced the debilitating fatigue peculiar to CFS, and I haven’t suffered from any of the many symptoms associated with it. During the last year, I’ve strength trained 5 days a week, power walked most days, engaged in some high-intensity training, and moved my family to another state while experiencing no downtime because of fatigue.
Yes, I think that qualifies as being finally healed from CFS. But, again, I have to be careful.
A review of 14 studies found that only 5% of people diagnosed with CFS ever fully recover. That means that even though I feel great, I have to continue to be disciplined to adhere to all the strategies that got me this far.
In this post and the next, I’d like to highlight for you the 10 most important strategies I used to beat this debilitating disease.
Caveat To Healing
Will these strategies work for everyone who has CFS? I don’t know. Since no one knows what causes CFS, there is no single proven treatment protocol. But I do know this, every one of the strategies I used is scientifically proven to make my body stronger and better able to heal itself from the disease.
Here’s something I also know. I suffered from this disease for 20 years before I began to make significant progress towards recovery. It wasn’t until I started using these strategies that I turned the corner away from sickness and toward wellness.
No Help From Mainstream Medicine
When I first developed CFS in 1986, very few physicians were aware of CFS. All of the doctors I visited were completely clueless as to what was wrong with me. My blood tests were always normal. I tested negative for Epstein-Barr, Lyme, Hep C, you name it.
Yet no one could figure out why I was not only chronically fatigued but also suffering from a slew of seemingly unrelated symptoms. Some doctors even raised an eyebrow when I mentioned how many different symptoms I had. Meaning, they thought I was some sort of a hypochondriac.
As time went on, mainstream physicians began to recognize CFS as an actual condition. However, they still had no idea what caused it or how to cure it. Their standard reply to me was, “Yes, you probably have CFS. You should rest more and see what happens.”
Of course, that’s not what I wanted to hear. I wanted someone to tell me that I would eventually get better! But that promise never came.
No Help From My Naturopath
About 10 years ago, I traveled out of state to see a naturopathic physician. He was very thoughtful and understanding and convinced me that I was not a hypochondriac. However, he also couldn’t give me a comprehensive plan for combating the syndrome. His primary suggestion was to take the numerous supplements he recommended. After many months of doing that and spending no little amount of money, I still had little relief from the fatigue.
A Lack Of Information
When I developed CFS in 1986, there was no such thing as the internet. That meant that we had little access to important medical information. Unless you had access to a medical library, it was virtually impossible to find information on CFS.
So, for the first 20 years of having CFS, mainstream medicine couldn’t help me at all. The best I could do was to reduce my fatigue by relying on trial and error. In other words, I learned which activities caused me the most fatigue, and I tried not to do them.
After about 20 years living with the disease, I regained about 20% of my former energy level. This allowed me to function at about 60% of normal. Some days I did reach 80%. But that generally lasted for only a short time. And even when I was at 80%, some aspect of the disease was always with me whether it was muscle aches, IBS, or headaches.
However, there would also be days when I would regress to about 40% of my energy levels. This could last for weeks at a time. For 20 years, I can honestly say that I didn’t have one single day where I felt perfectly healthy. I was beginning to forget what it was like to feel good.
Pathway To Healing
My healing didn’t really begin in earnest until about 8 years ago when I began searching out health and wellness websites that suggested alternative paths to healing. These sites emphasized strategies that stressed the elimination of toxicity, the reduction of chronic inflammation, strengthening the immune system, and optimizing cellular metabolism.
The idea was that by following specific practices my body would strengthen and eventually heal itself.
It took me about 7 years to put all these strategies into a comprehensive protocol for getting well and staying well.
I will be very specific concerning what I did to be healed, but first I want it to be clear that I didn’t just have a general fatigue or malaise. I had full-blown CFS. For those unfamiliar with CFS, let me tell you how bad it really is.
What Is CFS?
There is no confirmed diagnostic test for CFS or it’s lesser known name, Myalgic Encephalomyelitis (from now on I’ll use the abbreviation ME/CFS for CFS). The Center for Disease Control and Prevention (CDC), however, suggests that the three following core symptoms are required to make a diagnosis.
- Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. Fatigue is usually severe and is of a different type than one experiences after hard physical work or exercise. It is not relieved by rest and has not been present for someone’s lifetime.
- Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before the illness. This is known as post-exertional malaise (PEM). ME/CFS sufferers often improve to a point where they think they’re healed. They then resume their normal activities only to experience a severe relapse of fatigue and other symptoms.
- Sleep problems. Individuals with ME/CFS often experience sleep disturbances. That includes falling asleep and staying asleep. Often, a good night’s sleep will not alleviate fatigue.
In addition to these core symptoms, one of the following two symptoms is required for diagnosis:
- Problems with thinking and memory. This is commonly known as brain fog.
- Worsening of symptoms while standing or sitting upright. This is known as orthostatic intolerance and is caused by a dysfunction in the autonomic nervous system. In my case, I suffered from postural orthostatic tachycardia syndrome (POTS). With this syndrome, one’s heart rate will raise at least 30 bpm in at least 10 minutes after standing from a sitting position. See here.
Those are some bad symptoms, right? Well, it gets worse. Many ME/CFS sufferers also can experience the following symptoms in varying degrees:
- Muscle pain and aches (For years it felt as if I had clamps affixed to my arms and legs)
- Joint pain without swelling or redness (Several of my finger joints were inflamed for years)
- Headaches, either new or worsening
- Tender lymph nodes in the neck or armpits
- A sore throat that happens often
- Digestive issues, like irritable bowel syndrome (IBS)
- Chills and night sweats
- Allergies and sensitivities to foods, odors, chemicals, or noise
In my case, I hit the jackpot. Over the span of 28 years I experienced every single one of these symptoms to a greater or lesser degree. My worse symptoms were extreme fatigue, PEM, muscle aches, joint pain, headaches, and POTS. I also had an endoscopy done because of IBS.
Note that ME/CFS is considered only after everything else that could cause chronic fatigue is ruled out.
One question still remains unanswered: Why did I get ME/CFS?
It was a beautiful autumn day in October 1986. A perfect day for a run. The air was fresh and the trees in New York were exploding with color. My 3-mile jog was uneventful except that I experienced a slight cold feeling in my chest which lasted for about an hour.
I went to sleep that night feeling fine. However, upon waking the next morning I didn’t feel quite right. As I attempted to get out of the bed, I realized that something was really wrong with my body.
My legs felt like they were made out of concrete. I had to literally struggle to get them to move. Eventually, I got out of the bed, but I found that I couldn’t stand for more than about 30 seconds. I had no other symptoms except extreme fatigue when standing and walking.
After a few hours, I gained some ability to walk around for a few minutes at a time, but that was it. I was bedridden for the next 3 days. After about 3 weeks, I did regain some energy, but on the whole, I’d lost on average 40% – 50% of my normal energy levels.
Subsequently, I was forced to give up my podiatry practice and find work that would allow me to rest often. As the years went on, I would at times improve slightly. But, then, thinking I was better, I would engage in some strenuous activity only to eventually relapse back into a state of severe fatigue.
As I mentioned, the only answer I got from doctors was that I probably had chronic fatigue syndrome and suggestions that I should try and rest more. They didn’t know why I had gotten it or if I would ever heal 100%.
That wasn’t something a 30-something husband and father of 4 young children who was now running his own business wanted to hear. Fortunately, my business allowed me to take off and rest whenever I wanted. That helped a lot. But you can never take time off from your family, can you?
Why Do People Get ME/CFS?
To date, no one knows why people get ME/CFS. Researchers have suggested that there is an underlying viral component to the disease. In my case, I didn’t experience any acute flu-like symptoms prior to getting sick.
As the years went by, several physicians stated that I probably had some underlying inflammation going on. This belief was prompted by a slightly elevated liver enzyme. That was the only blood test that showed an abnormality. My sed rate (ESR) and CRP were always normal.
A Psychological Component To CFS
Other researchers believe “that physiological and psychological factors work together to predispose an individual to the illness and to precipitate and perpetuate the illness.” They are, however, unsure of what exactly these are.
From my experience, I concur that there is a psychological component to ME/CFS. I was under extreme stress for about 10 years prior to the onset of the disease. As I found out much later, my cortisol levels were completely out of whack. This meant that my adrenal glands were also in very bad shape.
Why did it take 22 years for a physician to finally check their status? Sheesh!
The Dysautonomia Angle
As I mentioned before, some researchers believe that a dysfunctional autonomic nervous system (ANS) plays a part in ME/CFS. This is the part of the nervous system that controls internal organs. One part of the ANS (parasympathetic) helps the body rest, relax, and digest food and another part (sympathetic) helps a person fight or take flight in an emergency.
What researchers are not sure of is whether dysautonomia causes or simply exacerbates the symptoms of ME/CFS.
After mentioning to one doctor that my pulse seemed to race at night especially after rising, he had me wear a Holter monitor for 24 hours. The data revealed that my heartbeat varied wildly during the night. The cardiologist who examined the data suspected that there was some type of dysautonomia involved.
My doctor told me that there was basically nothing you can do for dysautonomias (Not true! More on that later).
I Have POTS
I figured out later that the dysautonomia was POTS! It’s highly associated with ME/CFS. While there’s no cure for POTS, it is manageable.
As you can see, ME/CFS is a disease that involves many physiological systems. Not only does it cause extreme fatigue, it can also cause disruptions in the nervous system, cardiovascular system, musculoskeletal system, gastrointestinal system, immune system, gene expression, and sleep patterns. And if POTS is involved, the urinary tract can also be affected. See here.
For an extensive list of research being done into how ME/CFS affects the various system of the body, see here. If you want to know more about ME/CFS, the British ME Association has an excellent website with loads of very good information. Also, see Dr. Myhill’s site.
ME/CFS sufferers are not hypochondriacs. We just have a terrible disease without a specific cause and without a specific cure. But, in my case, it was curable.
Could I Have Healed Sooner?
I’ve read that some people with ME/CFS are healed after months of just complete rest. That usually entails no work and eliminating all kinds of stress.
In my case, that wasn’t an option. I had a family and financial responsibilities to consider. Would complete bed rest have healed me, though? I don’t think so. My dysautonomia and poor reaction to stress probably wouldn’t have allowed it.
Now, let’s get on with what I did to heal. Bear in mind that though this process took me many years to discover, I continue to use all the strategies to stay healthy and fit. I will list them in the order I discovered them.
Strategy 1: Going Gluten Free
About 12 years ago, I went gluten-free. This was the first major change I made on my health journey. Though I never had any of the major intestinal problems associated with celiac disease, I did have moderate IBS and a lot of the other associated symptoms.
As it turns out, myself and several family members have non-celiac gluten sensitivity (NCGS). With this condition, the ingestion of gluten doesn’t cause the destructive autoimmune inflammatory response in the gut like celiac disease does. However, it does cause an immune response that can result in systemic inflammation. See here.
Even if you don’t have NCGS, gluten has been proven to cause leaky gut by disrupting the tight junctions in the epithelial lining of your gut. Because of this, toxins, pathologic organisms, and their byproducts can pass into your bloodstream causing a chronic inflammatory response throughout your body. See here.
Strategy 2: Avoiding Antibiotics
From the time I had my tonsils out at age 4 to about 24 years old, I suffered from one throat and sinus ailment after another. Of course, the first treatment of choice for most doctors was to prescribe antibiotics. Needless to say, I took a lot of antibiotics throughout my life.
While antibiotics can be a life-saving gift from God, they also come with a downside. Often antibiotics don’t discriminate in their killing of bacteria. Meaning they eliminate bad bacteria but they may also destroy good bacteria found in your gut.
In a healthy situation, there are good bacteria (microbiota) that inhabit your intestinal tract. These beneficial bacteria aid in digestion, fighting bad bacteria, and in the production of some vitamins.
When your microbiome is disrupted, as when you take antibiotics, a condition called dysbiosis can result. Dysbiosis has been associated with a number of serious diseases including ME/CFS.
Since I went GF, I’ve only taken antibiotics one time. That was only to determine if I had Lyme disease.
These first two strategies didn’t result in a fantastic immediate improvement in my condition. But what they did do was begin to reduce the inflammation in my gut, help restore a healthy microbiome, and stop my gut from leaking dangerous toxins into my bloodstream.
A healthy gut is key for overall healing.
I didn’t yet understand how to fully heal my damaged gut microbiome. I’ll explain how I further did that when I get to diet strategies.
Next, I’ll reveal the first major strategy I used to gain back some significant energy.
Strategy 3: Daily Walking
About 10 years ago, I read an article about a condition called neurasthenia. This was a mysterious medical condition reported by doctors in the 19th and early 20th century. The description of the symptoms of the disease was very similar to what we now call ME/CFS. One of the treatments recommended for that condition was a daily walk.
I initially thought that that idea was absurd. Walking requires energy, right? Why would I want to expend energy when I had such little energy to start with?
Nevertheless, I decided to give it a try. I started out slowly by walking around the neighborhood for just a few minutes. Surprisingly, I found that I felt energized during the walk.
After gradually increasing the distance, within a month I was walking about 1.5 miles daily at a moderate pace without any fatigue at all. After the walks, I felt fine, though the fatigue returned after an hour or so. But I found that over a few months I actually did gain back, and keep, about 10% of the energy I lost.
There is some evidence (also see here) that graded exercise can help some ME/CFS sufferers. For me, a gradual increase in walking distance and speed seemed to work.
I Walk No Matter What The Weather
Walking continues to be an important part of my fitness routine, and I walk regardless of the weather. When it rains or the weather gets cold, I use a treadmill. For me, my treadmill is not only an important piece of fitness equipment, it’s also an indispensable piece of healthcare equipment. I’ve used this one for over 4 years without any issues.
Why Did Walking Work For Me?
I mentioned previously that a dysfunctional autonomic nervous system is closely associated with ME/CFS. This dysfunction usually presents with the sympathetic nervous system (fight and flight) dominating the parasympathetic nervous system (rest and digest).
Studies have shown that moderate aerobic exercise especially daily walking can enhance parasympathetic activity thus bringing the autonomic nervous system back into balance.
Recent studies have also shown that walking in nature is a powerful therapy for enhancing parasympathetic activity.
To this day, I continue to do a brisk walk (3.5 mph) for at least 1.5 miles 5 -6 times a week.
For the extraordinary health benefits of walking, see my post here.
Okay, that’s it for this post. I’ve given you the first three strategies I discovered that set me on the road to healing from ME/CFS. In my next post, I’ll give you the remaining seven.
I want to emphasize that these are the strategies that worked for me. I’m not recommending them for anyone. However, I believe that science has proven that they are efficacious for health and wellness. Remember, always check with your doctor before you start any treatment protocol.
Have a healthy and blessed week. In my next post, I promise I will present the next 7 strategies that helped me heal from ME/CFS. Also, I’d love to hear your thoughts.
- How I’m Using Creatine To Get Stronger - February 17, 2022
- How to Set Up a Home Gym: A Look at Our Garage Gym - January 26, 2022
- 65 Years Old And Getting Stronger: How We’re Doing It! - January 20, 2022
- If You’re Over 40 You’re Probably Losing Strength. You Must Deal With It Now! - January 4, 2022
- Get A Good Grip: How Your Hand Grip Strength Predicts Longevity - August 17, 2021
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Lucia Sweeney says
Thank you for the excellent information in your aticle.I found it most helpful and encouraging.I wish you Dr.John Bianchi the best of future health,today and always.
Dr. John Bianchi says
Thank you! I’m so glad you found this helpful.
While my CFS issues still feel like a gordian knot, I’m a bit hopeful seeing regular walking as a solution here.
I’ve had CFS since at least 2013, when I first started working from home. Then I changed work and had to walk 15 minutes to and from work every day – first I thought that would make things worse, but not at all! I was too scared to start exercising again though. Then I moved somewhere else again, only a 5 minute daily walk now… and again, felt like I was having issues. Then my employer moved, and now I had to decide whether to get a car or start walking 40 minutes to and from work.
That turned out to be just right! I soon dared to go hiking. My tours on the weekend got bigger and more difficult, while still walking to work every day. I thought I was on my way to be cured!
But then came the spring, and pollen allergies plus working from home again gave me a 1-2 punch from which I have yet to recover. I recently starting going on walks again, but I overdid it (muscle soreness a clear indicator).
But – I know now that there’s a path back to health. Walking at least twice, every single day, no exceptions. Plus some other things of course, but… baby steps.
Dr. John Bianchi says
I know what that gordian knot feels like. My CFS lasted for over 20 years. I’m glad that walking is helping you. It was an essential part of my healing process. I still try to do at least 1.5 miles a day. Sorry to hear about your setback. Unfortunately ups and downs are part of this disease, but don’t despair. As you learn more about your body you’ll find more ways to increase your energy and stamina.
Adam Hunter says
I apprarently got EBV that lead to CFS soon after so my symptoms never changed. I’m 24 years old and this thing had lasted almost two years now. Everytime I go to the doctor about it he acts like I’m crazy and says to just sleep and drink a lot of water. I don’t know if this is helping or not but I need help soon cause this is causing tremendous issues in my life.
Dr. John Bianchi says
I’m sorry to hear that Adam. I went through the same scenario 35 years ago. However, at that time there were few doctors who even knew what CFS was. Today, I would search for a specialist who was knowledgeable about CFS. There are many more specific tests today for identifying root causes of inflammation that weren’t available when I first got it. With CFS you have to rule out everything else before you can go forward. You have to make sure it’s CFS!
If it’s confirmed, then the road back to recovery begins. For me it was a difficult one. However, like I said I had little information to help me. You can read about what I did on the blog. Also, here is some good info https://www.drmyhill.co.uk/wiki/CFS_Checklist_-_start_off_and_check_your_treatment_regime_here
I hope you get well soon.
I’m 17 and I’ve had CFS for about 3 years now, and doctors think I’ve had it twice due to getting pneumonia. I’ve experienced all the same symptoms you have and I have been working really hard on my mental, gut, and overall general health. I have finally made it back to school for year 12 but I can only do 3 days a week if that and I am studying the easiest subjects I could find (which is slightly heartbreaking for a girl who loves maths and science!). After a day at school I have to lay in bed for at least 3-4 hours before I can get up again, and from there I try to walk outside and visit animals every hour to keep me moving. I am starting again on stretches given to me by a physio who specialises in CFS which I had to stop at the start of school, and I am doing daily 5 minute walks on top of school. Do you have any advice that could help me build up stamina to stay at school longer?
I am sure its rough being in your situations. I have one suggestion that might help. Drink a 1/2 lite of electrolyte solution in the morning and the early afternoon. This may prove helpful to you. I have 25 years of experience with this condition.
You can use something like NUUN tablets or make your own. Here is what I use
1/2 tsp of Himalyan salt, 1 tsp of NOW brands Potassium chloride which is the electrolyte base. To that you can add 1 tsp of Vitamin C (ascorbic acid), You can also add 2oz of Apple cider vinegar, 1 tsp of D-Ribose and for flavoring, I add 1/2 pack of True (Lime/Lemon). Try it for at least a week as all of those things should be beneficial to you.
I FINALLY VISITED A REUHMATOID DR. HE CONFIRMED THE REUMA FACTOR CAME BACK SGLIGHTLY ELEVATED BUT HE WAS NOT TOO CONCERNED. I MENTIONED HIM ALL MY CONCERNS AND HE JUST LOOK AT THE SCREEN AND TOLD ME THERE WAS NOTHING HE COULD DO TO ALLIVIATE MY FATIGUE AND PAIN AND AND JUST PRESCRIBED ME MORE COMPOUND/MEDICINE. NO MORE VISITS TO HIM !
Hi John! Thank you so much for this (and the part 2) post. Super useful and succinct. I wondered if you had written elsewhere about POTS? I’m 99% sure I have this but I can’t get a cardiologist appointment for months, so you think managing this helped your CFS/ME? Would you be able to share how you manage/d this? Thank you!