“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
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.
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
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
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.
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
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.
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
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
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:
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
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
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
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.
“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
“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
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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28 thoughts on “Potential Dangers of Exercise or Activity for ME and Chronic Fatigue Syndrome”
This is what happened to me too but thankfully I quit working after I got into a car accident because I was passing out from POTS while driving home from work. I definitely worked way too long though and can’t do much of anything anymore.
Yes I wish I’d stopped working sooner. The benefits system has to understand this condition otherwise there will be more and more in bed and lost lives
I’ve gotten a little better since (1) I no longer have the stress of waiting for disability benefits decision, and (2) pacing myself.
Early on, when I was still on short-term disability insurance, I kept trying to work part-time, mostly at the urging of my doctor at the time. My failure to do so did, in my attorney’s opinion, look good on my LTD case, but I think it set my health back a lot.
Even when I wasn’t working the half time I said I would try to, I was getting a lot of flak for not doing so and that was almost as strenuous. I was under no legal obligation to work at all.
It breaks my heart to discover how unalone I am in this. A lack of a diagnosis meant I kept trying to go to work until I was bedridden for a good nine months. Even then, after nine months in bed, my GP said all my tests were fine so I wasn’t going to get my sick line continued…. thank goodness my second opinion finally clued in. But that was waaaaaay too little, too late. 😔
Wowww, Perfect Article for Drs!! All they are trained in is that Exercise is a must for the body, or the muscles will decondition and atrophy.
That’s it….i doubt they truly understand mitochondrial dysfunction.
Thank you for this, so I can print it out
Light bulb moment finally. After years and years of not understanding why I would have days of recovery after any form of exercise it all makes sense. More harm than good. So thankful for this post.
Thank you thank you!!!
Here is current evidence. But it’s been around you just have to know where to look.
The Canadian and International Consensus Criteria as well as the US IACFSME Primer all have information on how to pace, and information on appropriate and inappropriate exercise for patients. I think these would be good to include in your information links on pacing.
Canadian (CCC) http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
International (ME ICC) http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
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Excellent. Thank you Leela.
I have cfs/me and found graded exercise to be very helpful. When I first started even very gentle exercise for a few minutes triggered symptoms. It took about 198 months before I noticed improvement. Once I started heart rate training the pace of recovery improved. It has been 6 years since I started. I can now kayak or do indoor rowing 5 to 6 times a day. I have been able to increase my VO2max by more than 50%. Am I cured no. However, my level of functionality has improved significantly.
remember not just physical activity but social interaction, emotional energy, stress etc all add up to part of energy ration. Need to be spread out ‘activities’ through out day, often must choose between them.
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excellent point. thank you.
thank you for this excellent comment. I have added it to this page: https://howtogeton.wordpress.com/how-to-rest-your-brain/
[…] Link to Exercise and ME blog […]
If someone suggests I exercise I tell them that I already am, and then I explain how I pace using a heart rate monitor to ensure that I stay under my anaerobic threshold, that I rest enough each day. I explain that for me walking to the bathroom raises my heart rate and is exercise for me. I explain that as i rest sufficiently my capacity to do more activity/exercise increases. I detail my recumbent exercise program and how the amount that I can do is increasing, albeit very slowly……In essence I reframe the concept exercise into what works for a person with severe ME/CFS. I think it is very careful to make it clear that sufficient REST is what enables us to heal and to do more and that the amount of exercise/activity we can do can be guided by our physiological response to exertion/exercise/activity/stressors……etc…
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Beautifully said. Thank you Robin.
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Robin, thank you for this great comment. I have added it to this page: https://howtogeton.wordpress.com/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-exercise-exertion-rest/
Pacing worked well for me as a teenager mostly , i pushed myself to hard sometimes in a bid to be “normal” and keep up with my friends. Stupidly i thought i was cured at one point able to hold a part time job for 6 months go to the pub on occasion. But now im a mum to a 3 year old i dont know how to pace. Any mums out there with advice ? I can almost feel my muscles wasting away if i dont go out for a few days but i know pushing myself isnt the answer to. This blog is so useful and brings positivity with its knowledge. Thank you. (Sorry for paragraph)
Thank you Amy. I hope someone else will come by with more ideas about mums. ❤
I think definition in Goudsmit et al is close to other definitions and science-based. Important to note that it’s a scientific concept now; not a lay one.
Pacing does not require heart monitoring. No evidence that this adds anything to just keeping an eye on how you feel.
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Thanks ellen. I’ll clarify that part.
Heart rate monitoring is a tool that many people find essential to guide their pacing, as for many “keeping an eye” on how they feel is not accurate enough. The claim that there is “no evidence ” that heart rate pacing adds anything to “just keeping an eye on how you feel” is at odds with many patients experience and this claim is NOT evidence based. To really know a study would have to be carried out comparing the results of patients pacing with those pacing using heart rate monitors and biofeedback to manage the pacing. The study would require objective clinical exercise assessments pre trial and post trial. To date as far as I am aware NO such trial has ever been carried out.
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Except over ten years of evidence by Workwell in California, the group of exercise physiologists who specialize in these kind of things. Heart rate tells you about the anaerobic threshold. The issue is that to determine a good anaerobic threshold may require a potentially dangerous test, the repeat CPET. You could guestimate though and then down or upgrade the heart rate accordingly. Heart rate monitoring allows you to see if the physiology is moving into dangerous territory before the symptoms actually arise.
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Thank you alex. Very helpful.
I’m not persuaded this links to classic ME.
Relying on how you feel may work for the less severe end of the spectrum but lots of people have found that at least at first heart rate monitoring is really really useful to realise how severely they need to rest. It is great if you are getting better by just keeping an eye on how you feel but for many of us heart rate monitoring is a tool essential to learning how to pace effectively. NO research into a technique is NOT the same as no evidence.
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You’re talking about a subjective experience. Anecdotes. Science is not based on anecdotes. I’m a scientist so I need more than a patient’s experience. I have tried to turn pacing into a scientific construct, not a lay one. And that requires a lot of work.