Many people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome are told that exercise will help them. Some people are also advised by friends, family or doctors to “stand up more” or “go outside more” or “do more activity.”
If someone is recommending that you do more physical activities, you may find it helpful to read some of the stories on this page, and consider what is best for you.
There are also links at the bottom of the page with scientific research, articles from medical experts, and additional information about exertion intolerance that you can read yourself or share with your friends, family, or doctor.
Do I Have ME?
If you are not sure if you have ME and you would like to learn more, here is the diagnostic information from the International Consensus Criteria for Myalgic Encephalomyelitis
What is Exertion?
It may be helpful to keep in mind that “exercise” does not always mean lifting weights or going to the gym. While every person is different, some people with ME experience symptoms or setbacks from activities such as:
- cooking a meal
- walking in your house
- talking on the telephone
- strong emotions
- reading, writing, or mental activities
How is Exercise and Exertion Different for People with ME?
While physical activity can be greatly beneficial for most conditions, many people with ME find that exertion can cause their symptoms to worsen. Sometimes temporarily. Sometimes permanently.
This is called “Post Exertional Malaise” or “Post-exertional Neuroimmune Exhaustion.”
Some people find that instead of exercise, they are helped by a practice called “pacing,” which monitors heart rate during activity. You can learn more about pacing at the bottom of this page.
Why Is My Doctor Recommending Exercise?
The type of exercise recommended by doctors is often called “Graded Exercise Therapy.” As more information about Graded Exercise Therapy is becoming available, many doctors no longer make this recommendation. However, some doctors are not aware of the latest research and developments in this area.
The links at the bottom of this page will explain why doctors began recommending exercise, and why many scientists and medical professionals changed their mind and are now recommending against it.
If your doctor is recommending exercise, you may wish to print and share some of this information with them. This statement from the Workwell Foundation may be helpful: Opposition to Graded Exercise Therapy for ME/CFS.
Stories from Patients
“After following my doctor’s advice to exercise, I became bedbound for 8 years.” – Ness M
“I was 14 when I got sick and recommendations to exercise harmed me.” – Caitlin M.
“I felt that I had no choice and had to take care of my kids. I pushed myself to keep doing things like laundry, dishes, and driving my kids places. Pushing too hard made everything worse. Now I am 90% bedbound.” – Julie L.
“My doctors told me that if I didn’t exercise I would de-condition and wind up in a wheelchair. I followed their advice. Guess who’s in a wheelchair now?” – MG
“When I was diagnosed, no one warned me about the dangers of exertion. I pushed myself to keep working, as I gradually felt worse and worse. I kept lowering my hours until eventually I was so depleted I could not physically stand up and get to my job at all. That was more than fifteen years ago and I still cannot drive a car, cook a meal, or walk down the street.” – Susan R.
“I was advised to take up gentle stretching Pilates, increasing by one minute every three days. It was a disaster for me. I got up to 10 minutes of gentle stretching but found I was deteriorating. After each session, I’d slowly recover, but never quite get back to where I was before. Within a few months, I went from being able to walk 200 meters each day to being housebound 6 days a week and bedbound 3 days a week. I so wish I had known of the dangers of overexertion. My quality of life would be much better now.” – TH
“I have crashed just from walking for a few minutes consecutively. Three times I crashed severely, and it took years to recover. Several more times I crashed less severely. When is research going to find us a cure?” – Tansy M
“If I could go back in time and do one thing differently: I would have stopped working the moment I first became ill. I have been homebound for twenty years. My life could have been different.” – Jane L.
“At first, exercise therapy seemed to be working, but then I had the biggest relapse of my life. My ME became so severe that it is now life threatening.” – Kara S
“My wife lost her ability to work after following her doctor’s advice to exercise. She has never recovered.” – Kerry C
“Before I was diagnosed with ME, I went through physical therapy for a herniated disc. The Physical Therapist was nice. He had me doing stretches and holds and he would manually stretch me if I could not do it, but…. by the time I left, my body would be in tremors and I would be sick for weeks. Finally in October I saw a doctor who said, “Whoa! Stop right there! You have ME.” Now I’m about 75% bed bound and 95% homebound.” – Jenni Wheeldon O’Connor
“I have myself been made severely ill by graded exercise. I’ve now been in a wheelchair for many decades.” – Irene T.
“Exercise did so much harm and ultimately lead to me being bedbound. I was diagnosed with POTS before I knew I actually had ME/CFS. My cardiologist put me through cardiac rehab exercise. The way she treated patients who complained that it was making them worse bordered on negligence and emotional abuse. I’ll never be able to undo the harm it caused me and am still paying for multiple hospital stays after various attempts at exercising my way to wellness.” – Amanda G
“Graded Exercise Therapy damaged my health, left me housebound, bedbound, and needing more care. Years later, I’ve never recovered from it”.- Leanne S
“Before Graded Exercise Therapy, I could read, hold conversations, and walk to the end of my road to shop. After Graded Exercise Therapy, I am now unable to get dressed without getting breathless and can no longer read a book!!”- Enid D.
“I was told: Exercise will cure you. It didn’t. Before graded exercise, I was moderately ill and able to leave the house independently most days. Now I am completely bedbound and unable to do anything other than eat, sleep, and lie in a quiet, dark room.” – CG
“Graded Exercise Therapy left me almost entirely housebound for 2 years. I’m just now finally recovering from it.” – Jeff S
“My doctor recommended exercise for me eight years ago and I haven’t recovered from it yet. Before exercise, I was still able to work part-time. Now I can’t even take care of myself.” – Beth B
“I thought I was doing Graded Exercise Therapy responsibly. It lead me into an 8 year downward spiral. Now I am housebound, dependent, lost majority of cognitive function, and have been bordering on bedridden.” – Deborah S
“Exercise can be the very poison that could be the final nail in the coffin of a ME patient.” – Pieter B
“I tried graded exercise for 2 weeks. It took me almost one year to get back to “normal”. This can be extremely dangerous!” – Claude G
“I was told that exercise would cure my from my fatigue. The opposite happened. I’ve never been more sick, bed-bound, exhausted, and disabled as I am now. If I had known of proper treatment and care for ME/CFS when I was first diagnosed, I could have saved myself from this.” Meagan K
“Graded Exercise Therapy is being used as a means of bullying patients. Protect yourself”. – Caroline K
“I tried it and it almost killed me.” Jennifer R
“It is now being proven CFS/ME is a serious biological impairment. Exercise therapy makes people more ill. It has to stop now.” – Claire C
“I had ME in my teens and exercise, or even just getting to school, only made me sicker and sicker. What aided my complete recovery was taking 6 months to do as little as possible.” – Belinda S
“How many more people have to be seriously damaged or die before exercise therapy is stopped?! There is no scientific basis for subjecting anyone to this.” – Samantha C
“After being encouraged to use Graded Exercise Therapy, my daughter got steadily worse. She has been housebound and bedbound for years now. Since we stopped following exercise therapy, she is starting to improve.” – Lois M
“My sister has ME. Graded Exercise Therapy made her worse when she was 18. Don’t do that to children!!” Steve G
“At age 13, our daughter was forced to do graded exercise while in the hospital. She deteriorated and went from ill to seriously ill. We then cared for her at home and her condition improved. Later she developed panceratitis, and returned to the hospital where she was again forced to do graded exercise…
“She rapidly declined. She took her own life in hospital at age 20.” – Judi C
What’s PACE? What’s Pacing?
As you read the stories and links on this page, you will see the words “PACE” and “Pacing.” PACE and Pacing are not the same thing! In fact, they are complete opposites. It’s terribly unfortunate and confusing that the words sound so similar. What’s the Difference Between PACE and Pacing? (Hint: One is good)
Many people with ME find that pacing helps them manage or improve their symptoms: How to Practice Pacing
About Exertion Intolerance
One of the key symptoms of ME is exercise intolerance or “exertion intolerance”. While exercise benefits many people with other conditions, an ME patient can experience worse symptoms after exercise.
- Exercise Intolerance (list of peer-reviewed articles)
- Exercise Intolerance (quotes from ME experts)
- For People with CFS, More Exercise Isn’t Better (NPR)
- Why Exercise Magnifies Exhaustion for CFS Patients (study)
- Ten Ways to Prove Exercise Does Not Cure ME/CFS
- Doctor Montoya’s Instructions: Please Do Not Overexert Yourself
- Opposition to Graded Exercise Therapy for ME/CFS – Open letter to healthcare providers, from the Workwell Foundation. Print and share.
About Graded Exercise Therapy
The type of exercise commonly recommended by doctors for ME patients is called “Graded Exercise Therapy.” This therapy is recommended based on a study called “PACE.” The PACE study recommended both Graded Exercise Therapy and Cognitive Behavioral Therapy as treatments for ME. While many doctors have now stopped recommending these treatments, there are also many doctors who are not yet aware of the latest research and developments in this area:
- Graded exercise therapy is not effective and unsafe
- Getting It Wrong on Chronic Fatigue Syndrome
- Can patients with CFS really recover after Graded Exercise?
- The Troubling Case of the PACE CFS Study
- PACE Trial: Bias Methods and Unreliable Outcomes
- Bad Science Misled Millions with Chronic Fatigue Syndrome
- Journal of Health Psychology: Special Issue on the PACE Trial
- MEassociation survey of exercise, pace, and pacing
- “One of the Greatest Medical Scandals of the 21st Century”
- More info at Stop Graded Exercise Therapy website
From The New York State Department of Health
“Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are afraid to exercise and thus become out of shape (deconditioned). But these conclusions are based on studies that included patients with other fatiguing conditions.
“The recommendations to use CBT and GET to treat ME have caused more harm than good for people with ME and have been eliminated from the Centers for Disease Control and Prevention (CDC) website.
“Currently, there are no FDA-approved treatments specifically for ME. Among suggested treatments are “pacing”, which can help people with ME avoid crashes by matching their level of activity to their limited amount of available energy; use of sleep aids and medications; anti-inflammatory medications and muscle relaxants; and treatments for pain. People with ME can be sensitive to medications so it is recommended to start at low doses.
“In addition to prescribing treatments, health care providers can help people with ME apply for disability, obtain assistive devices such as wheelchairs, and receive accommodations in the workplace and at school.”
From the New York State Department of Health
Tools to Take Care of Yourself
- How Did You Get Others to Understand That Activity Makes You Worse?
- How Do You Know If You Need a Wheelchair?
- How to Do Less
- How To Save Spoons
- How to Rest Your Brain
- How to Practice Pacing
- Post Exertional Malaise Avoidance Toolkit
- ME/CFS Treatment Resources
About the CPET Test
The 2-Day CPET is a test sometimes used by people with ME or Chronic Fatigue Syndrome, often while applying for disability. Some patients report that this test created very helpful documentation and provided clear evidence of the impact of exertion on patients with ME. However, this test requires physical exertion, and many of our readers report that they were not warned about the impact the test could have on their health.
Connect with Others (from bed!)
- Health Rising: Finding Answers for ME/CFS
- #MEAction: International Grassroots Network of ME Patients
- Great Facebook Groups for ME, CFS and Invisible Illness
Learn More About ME and CFS
- Medical Tests for ME and Chronic Fatigue Syndrome
- MEAction list of doctors for Myalgic Encephalomyelitis
- Colleen Steckel’s list of doctors for ME
- How to Get Diagnosed with ME or Chronic Fatigue Syndrome
- How to Apply for Social Security Disability with ME (US)
- How Apply for employer disability with ME (US)
What Do You Think?
Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.
Updated January 2019. If you found this page helpful, please share it with others by pressing one of these magic little buttons: