Currently, there is no treatment protocol or intervention which will cure ME/CFS. The role of the physician is, therefore, first, to do no harm, second, to try to improve daily function, expand activity, and ameliorate specific symptoms, and third to support the patient and the family. School personnel often need to be educated about ME/CFS and made aware that ME/CFS is a physical/organic illness, not a psychological disorder. We caution against reliance on internet-based information because much of it is anecdotal, uncorroborated, and may be designed to sell unproven products or services. Click to expand...

Following even minor physical, cognitive or orthostatic activity, the fatigue and other ME/CFS symptoms are worsened. This worsening of symptoms can occur any time from immediately following activity, to up to 48 hours following activity and it can last for days or weeks or months. This phenomenon is the cardinal feature of ME/CFS. Click to expand...

Adding an exercise program to the schedule of a young person who can barely manage to cope with limited educational activities can be counterproductive. Exercise has been promoted as therapeutic in patients with ME/CFS, but many patients drop out of exercise studies because exercise clearly made them worse ( 101 ). Some individuals with ME/CFS mistakenly over-exercise in an attempt to reduce fatigue and then incur post-exertional relapse. No studies have shown that exercise can produce a cure for ME/CFS. Click to expand...

Occasionally an excess of caution in young patients and/or their care givers can result in too much rest. Click to expand...

However, for some patients with less severe ME/CFS, or during a remission, a suitable exercise program can improve function and provide some enjoyment. Any exercise program should not take priority over activities of daily living, education and socialization. Special care also needs to be taken to ensure that exercise is not advanced too rapidly or too soon, as by definition, excessive exercise can exacerbate ME/CFS symptoms. Click to expand...

Young people with ME/CFS often do better when they (and their parents) learn to adapt their lifestyles to live within their capabilities, and pace or spread out their activities so that they can avoid a boom and bust cycle of over-activity on a given day followed by a “crash” the following day. Remaining as active as possible while avoiding post-exertional flare-ups delineates an optimal zone of activity termed the “energy envelope.” It has been shown in adults that fatigue severity declines when patients stay within their energy envelope ( 103 ). Click to expand...

Guidelines for exercise in healthy, but sedentary young people are inappropriate for patients with ME/CFS, because strict adherence to these guidelines can cause post-exertional relapse. For some young patients, it might be necessary to first treat their OI and improve their ability to remain upright before any exercise can be adequately tolerated. Click to expand...

For the Moderately Impaired

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Exercise should begin with as little as 1–2 min of gentle stretching followed by rest. When recovery has occurred another 1–2 min can be attempted. When stretching exercises do not trigger post-exertional symptoms, intervals of recumbent exercise can be added such as leg lifts while supine, or the use of a recumbent stationary bicycle. The individual can be encouraged to increase the duration of activity very gradually, provided that the prior period of activity has not aggravated symptoms, until a reasonable exercise volume has been achieved. Rest between activities is needed, and young people are advised to avoid the “push-crash” cycle of excessive activity on a good day followed by prolonged post-exertional collapse. Click to expand...

Mildly Impaired Patients

Leisurely walking with an initial duration of 5–15 min followed by a rest is suggested. The duration or pace of the walking can be increased gradually provided post-exertional symptoms do not occur. Click to expand...

Higher Functioning Patients



An exercise program might involve joining some organized sporting activities at school, but with modified participation. The effect of exercise on ME/CFS should be discussed with the student, her/his parents and the school personnel. Everyone should be reminded that when the patient feels that she/he has done enough, she/he must stop and rest and never force her/himself to achieve more. Fluctuations in illness severity are also common and patients might find that they need to reduce their activities for a period of time. Click to expand...

Explicit instructions for what a doctor can do for a child with ME:There are several nice charts of possible treatments for various symptoms. Sleep:Headaches:Pain:Personally I disagree with PEM starting immediately after exertion. That can happen with a different form of exercise intolerance which we also probably often have:Good info regarding GET:I doubt this ever actually happens. It's just a "maybe" situation we get from quacks pushing exercise:I don't think there's any scientific support for the claim that exercise programs improve outcomes for people who are already in remission:I'm a bit nervous about phrases like "remaining as active as possible." I think it distracts from putting the emphasis on avoiding excessive activity:I wish they'd stopped at pacing:They seem to be advocating symptom-based GET, which isn't as likely to be physically harmful, but still distracts from avoidance of excess exertion. It also creates expectations that exercise can improve symptoms or the ME itself, which is not supported by any evidence:But again, a good caveat: