by Cort Johnson
Your family, friends and even your doctor may, probably will at some point, prod you to get moving. They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you are and how little they understand what you are going through.
You have to cut them some slack, though. You may, after all, look like you’re the picture of health. Plus we all intuitively sense that exercise, in general, is good for us and bedrest can make things worse. From the outside exercise might look like just the ticket. They are only trying to help.
Well, exercise is a ticket – but usually not to better health. While people with ME/CFS – like anybody with a chronic illness – should make every attempt to maintain their fitness, vigorous or even light exercise almost always has negative effects.
But how to convince your family, friends and even your doctor of that? It may take some hard evidence. Below are some suggestions that may help some well-meaning friends, family members and even doctors understand about exercise in chronic fatigue syndrome (ME/CFS).
#1 – Tell them that studies show that your symptoms can get worse – much worse. (They want you to feel better, right?)
Tell them that while vigorous exercise actually reduces pain levels and helps healthy people think better, studies indicate that even bouts of submaximal exercise increase pain sensitivity in ME/CFS and cause more cognitive problems. Vigorous exercise provoked symptoms of fatigue, light-headedness, muscular/joint pain, cognitive dysfunction, headache, nausea, physical weakness, trembling/instability, insomnia, and sore throat/glands in one group of ME/CFS patients.
#2 – Knock out the deconditioning deception, if it shows up.
ME/CFS is not deconditioning nor are its symptoms explained by inactivity. The debility in ME/CFS is much greater than is seen with deconditioning The Workwell Foundation
Yes, but your doctor says those symptoms are occurring because your muscles and cardiovascular system are deconditioned. You just need to get conditioned again!
If only that were so. If you are deconditioned (as is likely if you’re bed or homebound), note that and then tell him/her that a large study just found that deconditioning played no role in the reductions in energy production found during an exercise study. Deconditioning may be present but it’s not causing ME/CFS.
#3 – Point out the negative physiological effects exercising has on ME/CFS.
OK, they say – so exercise makes you feel bad. But shouldn’t you do it anyway? Just to keep up your strength and fitness? Come with me to the gym…
There is certainly something to be said for being as fit as possible in any disease, but studies indicate that vigorous exercise doesn’t just make people with ME/CFS feel worse – it actually damages them physically.
Studies indicate that vigorous exercise impairs an ME/CFS patient’s ability to produce energy and to think, and negatively impacts the functioning of their brain and their autonomic nervous, gastrointestinal, and immune systems. Exercise appears to produce a burst of inflammation in ME/CFS which results in increased oxidative stress and immune, autonomic nervous system and hormonal changes.
In fact, exercise discombobulates so many systems in ME/CFS that it’s regularly used by researchers to understand this illness. A multi-year study underway at the NIH’s Intramural Hospital is using an exercise challenge to do just that.
Thanks, but you’re going to skip the gym…
#4 – Highlight the unique response to exercise found in ME/CFS.
But, but, but, but, but your friend (or doctor) says, people with heart problems, chronic obstructive pulmonary disease (COPD), diabetes, arthritis and other diseases benefit from exercise. People die from heart disease and COPD and they can exercise. Are you saying that ME/CFS is different from all those terrible diseases?
Yes! Tell them that the evidence to date suggests that the exercise problems in chronic fatigue syndrome (ME/CFS) are unique. Unique, as in – not found in any other disease.
Two-day exercise tests indicate that vigorous exercise in ME/CFS actually damages a person’s ability to exercise. That’s very unusual. People with all sorts of serious diseases like heart failure, pulmonary hypertension, and kidney disease can at least tolerate exercise. It’s not so with ME/CFS: the main energy production system in the body (the aerobic energy system) is broken.
#5 – Besides – tell them it’s been tried…and it didn’t work out so well.
Tell them millions of dollars have been spent using an approach called graded exercise therapy (GET) that seeks to have people with ME/CFS exercise more. Tell them that the field is fraught with problems. A recent review of those studies was actually withdrawn by the journal editors because they felt the reviewers overstated their case. Tell them that that rarely happens in the medical field but it’s almost par for the course with regards to GET and ME/CFS.
One huge trial, apparently struggling to get positive results, so dramatically changed their criteria for success that some people with ME/CFS were considered recovered at the time they entered the trial. (Even then the results were mediocre. When another group used the original criteria for success, even those small benefits disappeared.)
Called the PACE trial – the biggest ever in ME/CFS – that study was so poorly done that an entire issue of a medical journal was devoted to exposing its weaknesses. One hundred academics recently signed a letter asking that the results of the trial be re-analyzed.
After a review by an independent group found little evidence that GET works in ME/CFS, the Centers for Disease Control promptly stopped recommending it. This year – the Dutch Health Council – long the bastion of a GET approach to ME/CFS – did the same.
Get the picture? If your doctor thinks they know about exercise and ME/CFS and they’re putting you on a graduated exercise plan that increases your exercise every week, they’re getting some bad information. The GET field is plagued with bad studies which at their best produce mediocre results.
#6 – Maybe you were not a paragon of fitness before ME/CFS showed up… Maybe someone thinks this disease is just the accumulation of insults that you, a couch potato par excellence, somehow foisted upon yourself? If so, tell them about Jamison Hill – bodybuilder extraordinaire.
Jamison Hill was a bodybuilder and athletic trainer before he suddenly, in the midst of a workout, became dizzy, experienced chills and intense heart palpitations – and came down with ME/CFS. Prior to ME/CFS, he spent over 1,500 hours a year working out.
At his worst after ME/CFS, he couldn’t leave his bedroom. Five years later, he’s still homebound with no end to the disease in sight. He’s just one of many former athletes to get it.
#7 – Demonstrate that even gentle exercise can be too much.
OK – your friend says, pounding weights at the gym is out. How about just going for a walk every day. Surely you can do that!
Good try! Some people with ME/CFS can, in fact, go for short walks (and do). Unfortunately, even light exercise like walking is too much for most of us. One study that asked people with ME/CFS to walk 15-25 minutes a day found that instead of getting better, their symptoms worsened. One reason for this is that walking takes more energy than usual in ME/CFS. One study found that walking, presumably because of ME/CFS patients’ reduced ability to utilize oxygen, placed far more of a physiological burden on people with ME/CFS compared to healthy controls.
#7 – Inform them that even normal activities are often too much.
All right, all right, all right – your hubby says. Going on walks isn’t going to do it, but you’re lying in bed most of the time! Surely you can get up and do stuff around the house (????).
If only he knew how much you’d love to do housework. How much you yearn to do the tasks that you didn’t like to do before. You’d LOVE to be able to scrub the floor again!
One study found that the more activity people with ME/CFS engaged in, the more symptomatic they became. Exercise physiologists have found that the aerobic energy production system can be so broken in this disease that even sitting up can be too much.
Even normal activities are often too much. The reason is that ME/CFS is not an exercise disorder, it’s an exertion disorder.
#8 – Emphasize that exercise is just the tip of the iceberg: ME/CFS is really an “exertion” disorder.
Explain that ME/CFS is an exertion disease. In fact, problems with simply exerting oneself, whether physically or mentally, are often so dramatic that a federal report suggested that ME/CFS be called Systemic Exertional Intolerance Disorder (SEID).
New Term – Symptom flares occurring after too much exertion are so bad that a new term – post-exertional malaise (PEM) – was introduced into the medical lexicon to characterize it. PEM is the hallmark symptom of ME/CFS; if normal physical or mental exertion does not cause your symptoms to increase – you don’t have ME/CFS: it’s as simple as that.
Tell him/her studies indicate that too much exertion produces symptoms like exhaustion, brain fog, sleep disturbances, headaches, muscle pain, flu-like symptoms (e.g. nausea, irritable bowel), dizziness, anxiety, depression, and sensory overload. In the worse off, too much exertion can produce a symptom flare that lasts weeks or even months.
#9 – Besides, tell them (politely) that you’d really rather listen to the voices of experience …
Weeks or months? How about years? If they’re still bugging you and you’re not home or bedbound now, you might tell them that about 25% of people with ME/CFS are… and they got that way somehow. The number one response to an informal survey asking people with ME/CFS what they would have done differently, was that they would have paced themselves earlier in the illness. Several thought their lack of pacing set them up for a devastating decline.
#10 – Tell them what can work and how you would love to get some support with that.
At this point your friend may be flustered by all this bad news. Tell them there is one thing that appears to help about 75% of people with ME/CFS. It’s called pacing.
One study found that staying within one’s energy envelope or pacing – staying at a level of activity which does not cause symptoms – allowed many people with ME/CFS to do a bit more with fewer symptoms. Short-term attempts at “pushing through” resulted in crashes (pain and suffering) and less activity overall, while pacing and remaining within one’s energy envelope allowed people with ME/CFS to do more with less pain and fatigue.
Pacing is not a cure, but it can help, and there is an approach to exercise that does work. A heart-rate based exercise protocol which includes pacing and avoids the anaerobic energy production system can help you keep as fit as possible without sending your system into a flare.
Physical therapy – done correctly – can help too. Some patients find that exercises like yoga and QiGong, which keep one limber and emphasize breathing and calming techniques, are beneficial.