Potential Dangers of Exercise and Activity for People with ME

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Robin Mead

Many people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome are told that exercise will help them. Some people are also advised 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, and additional information 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 Exercise? 

It may be helpful to keep in mind that “exercise” does not always mean lifting weights or walking outside. While every person is different, some people with ME experience symptoms from activities such as:

  • walking to the bathroom
  • standing in the kitchen
  • talking on the telephone
  • gentle stretching
  • strong emotions
  • reading, writing, or mental activities

The type of exercise recommended for ME patients is often referred to as “Graded Exercise Therapy.” Though some doctors may simply recommend “exercise” or “physical activity”.

How is Exercise Different for People with ME? 

While exercise 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 information and research in this area is rapidly changing, and many doctors are not yet aware of the latest developments.

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.

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

Excerpts above from the #MEAction Petition to stop Graded Exercise Therapy, and from members of the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Facebook group.

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

Print ME

About Exercise 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.

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:

Tools to Take Care of Yourself

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!)

Learn More About ME and CFS

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 May 2018. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

21 thoughts on “Potential Dangers of Exercise and Activity for People with ME”

      1. 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.

        Liked by 2 people

    1. 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.

      Liked by 2 people

    2. 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.

      Liked by 1 person

      1. 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.

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  1. 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…

    Liked by 1 person

    1. 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)

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  2. 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.

    Liked by 2 people

  3. 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.

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  4. 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
    US http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

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