Potential Dangers of Exercise or Activity for ME and Chronic Fatigue Syndrome

Art by Robin Mead

“After following advice to exercise, I became bedbound for 8 years.” – Ness M

We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life.

Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can be true.

While physical activity can be greatly beneficial for many other conditions, many of our readers with ME report that exertion caused their symptoms to worsen. Sometimes temporarily. Sometimes permanently.

Medical literature and scientific research are still working to understand why this happens to patients with ME, and as more information becomes available in this area, many doctors who previously recommended exercise therapy for their ME patients are now changing to recommend against it.

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? – Meg G

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HOW IS EXERCISE AND ACTIVITY DIFFERENT FOR PEOPLE WITH ME?

If you have ME, you may respond to exercise and activity differently than other people. Medical research has shown that one of defining characteristic of ME is that patients feel worse after exertion. This symptoms is called “Post Exertional Malaise” or “Post Exertional Neuroimmune Exhaustion.”

As you read the stories and articles on this page, it may be helpful to keep in mind that “exertion” does not always mean lifting weights or going to the gym.

While every person is different, some people with ME experience symptoms from activities such as: cooking a meal, walking in your house, talking on the telephone, strong emotions, or reading, writing, or mental activities.

You can learn more about how people with ME respond to activity and exertion in this article from NPR: For People with CFS, More Exercise Isn’t Better.  Cort Johnson and Health Rising has assembled this excellent list of: Ten Ways to Prove Exercise Does Not Cure ME/CFS. You may also find it helpful to read this advice from an ME Specialist: Doctor Montoya’s Instructions: Please Do Not Overexert Yourself.

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.

That was more than fifteen years ago and I still cannot drive a car, cook a meal, or walk down the street.

– Susan R.

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WHERE CAN I FIND SCIENTIFIC AND MEDICAL LITERATURE?

🌷 Lisa Petrison and Paradigm Change has assembled this list of Peer Reviewed Articles on Exercised Intolerance in ME and CFS

🌷 Paradigm change has also assembled this collection of Quotes from Medical Experts about Exercise Intolerance in ME and CFS.

🌷 The Workwell Foundation has a collection of articles and videos related to clinical exercise testing on patients with ME: Workwell Foundation Research and Articles, 

🌷 From the University of Florida, a Study on Why Common Daily Activities Magnify Exhaustion for CFS Patients.

🌷 The Workwell Foundation released this excellent letter you can share with your doctor: Opposition to Graded Exercise Therapy for ME/CFS

🌷 This Statement from the New York State Department of Health is a very helpful resource which states that “The recommendations of cognitive behavior therapy and graded exercise therapy to treat ME have caused more harm than good and have been eliminated from the Centers for Disease Control and Prevention website.”

🌷 Here’s where you can find the #MEAction Fact Sheet: Diagnosis and Management of ME

🌷Study from the European Journal of Applied Physiology: Poor Oxygen Extraction is Contributing to Exercise Intolerance in Chronic Fatigue Syndrome

I pushed myself to keep shopping, cooking, cleaning and driving. I could feel I was getting worse, but I kept pushing. Now I am 90% bedbound.

– Julie P

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WHAT IS POST EXERTIONAL MALAISE? 

“Post Exertional Malaise” is a fancy way of saying: “After I do things, I feel worse.” Medical professionals may refer to this as “exertion intolerance” or “Post Exertional Malaise” or “Post Exertional Neuroimmune Exhaustion.”

Here’s how it’s explained in the International Consensus Criteria for Myalgic Encephalomyetis:

🌷 Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. (Translation: “After I do physical things, I feel worse” or “After I read or write or do other mental tasks, I feel worse.”) 

🌷 Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms (Translation: “After I do things, I feel like I have the flu, or feel pain, or feel worse in other ways”)

🌷 Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. (Translation: “I may not feel worse right away. I may start to feel worse in a few hours, or the next day, or the day after that.”)

🌷 Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. (Translation: “I can feel worse for a day, or for few days, or for a few weeks, or longer”)

I was told that exercise would cure me 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

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DO I HAVE POST EXERTIONAL MALAISE?

One of the greatest challenges new patients can have is recognizing Post Exertional Malaise. Post Exertional Malaise does not always happen right away. It may occur hours later, or days later.

It can manifest as physical symptoms (such as fatigue, weakness or flu-like symptoms) or mental ones (such as cognitive problems or trouble with focus, memory and concentration). Some ME patients find that by paying more attention to their cycles of energy and crashing, they were better able to manage their illness.

The 2-day CPET is a test some practitioners are using to measure Post Exertional Malaise.  It is only offered in a few areas of the country, and has some pros and cons: How to Get a CPET (maybe)

I was 14 when I got sick and recommendations to exercise harmed me. – Caitlin M.

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PEOPLE WHO TRY TO HELP 

If someone who cares about you is recommending that you do more physical activities, you may find it helpful to read and share some of the stories, research studies, and medical literature on this page.

It can be a great emotional struggle to respond to loved ones who are advising to “go out more” or “stand up more” or “be more active.” Great ideas from people who have been there: How Did You Get Others to Understand That Activity Makes You Worse?

At age 13, our daughter was forced to do graded exercise as a treatment for ME 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

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IS EXERCISE EVER SAFE? 

Each person’s body is different, and there is no one right answer that will apply to everyone.

Many of our readers report that they were able to better identify their own limits and find the activity levels that worked for them by practicing a technique called pacing.

Here’s where you can learn about How to Practice Pacing with a Heart Rate Monitor. You may also be interested in this video presentation by Dr. Mark Van Ness Expanding Physical Capability in ME/CFS.

On the other hand, we have also heard from readers who were initially diagnosed with ME or “Chronic Fatigue Syndrome” and later discovered that they had been misdiagnosed and there was a different underlying cause of their symptoms. If your symptoms are not being caused by ME, the articles and ideas on this page may not apply to you.

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.

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WHAT IS ME? DO I HAVE ME? 

If you would like to learn more about ME, you may find it helpful to review the diagnostic information from the International Consensus Criteria for Myalgic Encephalomyelitis: How Do I Know If I Have ME?

You can also read the entire ICC Primer for Medical Practitioners. Created by a consensus panel of medical specialists around the world, this document contains detailed diagnostic and treatment information along with further information on the impact of exertion on patients with ME.

I thought I was doing graded exercise 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

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WHAT IS GRADED 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.

Learn more about Graded Exercise Therapy: Graded exercise therapy is not effective and unsafe, Getting It Wrong on Chronic Fatigue Syndrome, Can patients with CFS really recover after Graded Exercise?

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

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Why Is My Doctor Recommending Graded Exercise? 

Doctors began recommending Graded Exercise as a result of a study in England called PACE. Learn more about why doctors began making this recommendation, and why many scientists and medical professionals changed their mind and are now recommending against it:

Science writer Julie Rehmeyer wrote an excellent article explaining How Bad Science Misled Millions with Chronic Fatigue Syndrome,

David Tuller is a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health who has been investigating Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS

The Journal of Health Psychology also devoted an entire issue to this topic: Special Issue on the PACE Trial. Featured articles include: PACE Trial: Bias Methods and Unreliable Outcomes.

The MEAssociation has declared the PACE study to be “One of the Greatest Medical Scandals of the 21st Century”.

“Exercise Therapy left me almost entirely housebound for 2 years. I’m just now finally recovering from it.” – Jeff S

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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.

PACE is a study in England that recommended Graded Exercise Therapy. Pacing is a technique for monitoring activity that many ME patients find helpful.

Here’s where you can learn: What’s the Difference Between PACE and Pacing? (Hint: One is good). A comparison of the two can be found in this MEassociation survey of exercise, pace, and pacing

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

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Tools to Take Care of Yourself

Techniques, tools and stories from our readers:

• How to Practice Pacing
• How Do You Know If You Need a Wheelchair?
• How to Do Less
• How to Rest Your Brain
• Post Exertional Malaise Avoidance Toolkit
• ME/CFS Treatment Resources

Amanda’s Story

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.

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.

T’s Story

“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

Jenni’s Story

“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

More Stories from Patients

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

“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

“If I could go back in time, 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.

“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

“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 have crashed just from walking for a few minutes consecutively. Three times I crashed severely, and it took years to recover.” – Tansy M

“Graded Exercise Therapy damaged my health, left me housebound, bedbound, and needing more care. Years later, I’ve never recovered from it.” – Leanne S

“I tried it and it almost killed me.” Jennifer R

“My sister has ME. Graded Exercise Therapy made her worse when she was 18. Don’t do that to children!!” Steve G

Statement From The New York State Department of Health

“The recommendations to cognitive behavior therapy and graded exercise therapy 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 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

“My wife lost her ability to work after following her doctor’s advice to exercise. She has never recovered.” – Kerry C

Learn More

Patient Stories on this page from the #MEAction Petition to stop Graded Exercise Therapy, and from members of the Myalgic Encephalomyelitis Facebook group

Complete guide: How To Save Spoons: A Self-Advocacy Guide for ME/CFS

I have myself been made severely ill by exercise. I’ve now been in a wheelchair for many decades. – Irene T.

What Do You Think? 

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