Scientific Overview
Stress and Stress Tolerance
HPA Axis
Circadian Rhythms
Immune System
Placebo Effect
Chronic Fatigue Syndrome
Chronic Pain
Psychiatric vs Organic Debate
Irritable Bowel Syndrome
Chronic Lyme Disease
Recovery from ME/CFS

Recovery from Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME)/Burnout

See also recovery stories

Once you know the cause of your illness, it is possible to fully recover and lead a normal life without having any relapses. In practice, however, it is not always that easy, due to the difficulty (or unwillingness) in recognising the causes of the illness, and the hard decisions that sometimes need to be made in order to recover.

1. Remove the causes of the illness. The cause is usually one or more stressors, such as work stress, relationship problems, excessive responsibilities, or a combination of different stressors. The first step is to recognise the causes of the illness, and then remove them. This can sometimes involve making difficult decisions—such as giving up a job, moving to a different location, or ending a relationship. Usually the illness is triggered by a combination of multiple stressors, such as work, personal or viral. In many cases the cause is an unsatisfying, emotionally draining, or stressful job, and recovery involves changing to a different career (after a recuperation period). Even if you love your job, working excessive hours with too little sleep for a long period of time may trigger ME/CFS. Excessive exercise and overtraining can also be a trigger.

Note that even after the initial stressors have disappeared, other factors can perpetuate the illness, such as a belief that you will never recover, not being able to work or earn money, or hostility at doctors or family members who you think are telling you the illness is "all in your head". In many cases ME/CFS itself can become a vicious circle of negative stress, resulting in continuing illness even after the initial stressors have been removed.

2. Allow your body to rest and heal. It is important to let your body rest after removing the stressors. Long-term chronic stress causes physical changes in the structure of the brain, including reductions in neurotransmitter receptors, reductions in the amount of grey matter, shrinking of the hippocampus, and changes in the HPA axis. Reversing these changes takes time: usually a number of months. Patients find that "giving in" to the illness is an important step in recovery, rather than fighting it. However, be careful not to rest for too long or do too little, as that can also be detrimental.

3. Gradually increase physical and mental activities. In many cases, simply removing the stresses that caused the illness does not result in full recovery. Doing too little is as bad as doing too much, and may result in continued illness. Try to have a routine/structure in your daily activities, and gradually build up mental and physical activity. Listen to your body and rest when you are tired, to avoid relapses.

4. Avoid the "boom-bust" cycle. Many studies show that having an "all-or-nothing" coping style is a factor both in perpetuating ME/CFS, and in causing mononucleosis (glandular fever) to turn into ME/CFS. What happens is that the patient tries to do too much, pushing through the fatigue, and this then results in a relapse. The key is to rest when your body tells you, then build up gradually when you feel you have the energy. Don't do too much or push yourself too hard, and always give your body time to rest. Being a perfectionist or a people-pleaser have been shown to be risk factors in ME/CFS, presumably because these types of personality try to push through fatigue more than others.

5. Build up your life again. After long-term stress, changes occur in the physical structure and function of the brain which results in the symptoms of ME/CFS. Factors that help to reverse these changes include: working towards positive motivating goals, participating in enjoyable physical and mental activities, and changing your life so that you wake up each day looking forward to the things you are going to do. The pursuit of important goals, along with the perception that these goals are being reached, has been shown to be an important factor in maintaining happiness and avoiding burnout, and also appears to be an important factor in recovering from ME/CFS. It may be that this gives the brain a "kick" out of it's negative feedback state. Also important is having pleasurable/joyful experiences each day. It is important not to try to do too much too soon, otherwise a relapse is likely. Instead, build things up gradually over a period of months or years, aiming towards eventual full recovery.

6. Address sleep issues. Many studies show that poor sleep contributes to ME/CFS symptoms, and therefore it is important to try to improve sleep as much as possible. Try to have the same bedtime every night and avoid long naps during the day. Activities and structure during the day help to promote sleep. Sunlight during the day (and especially in the morning) helps to reset the body clock. Don't lie awake for a long time if you are not sleepy — try reading until you feel sleepy (using a dim light). Melatonin or other sleep medication may be beneficial for short-term or occasional use. It may be worthwhile getting tested for sleep apnea.

7. Avoid the triggers in future. You can live a normal life after recovering from ME/CFS, and if you do the right things you can avoid having future relapses. You don't need to remove all of the stresses and difficulties from your life, but you do need to avoid getting into long-term emotional sinks, jobs with excessive pressure, and similar traps. Anger is one of the worst negative emotions for triggering ME/CFS relapses, and should be avoided if possible. Avoid having a negative perception of stress (i.e. feelings of anger/defeat), as this may contribute to the negative feedback of the HPA axis in response to stress. Resentment at having to do a stressful or difficult job can also result in burnout. Techniques such as mindfulness meditation may be useful in avoiding emotional overengagement.

8. Be in control. Always try to feel in control of your destiny, and the tasks you are doing. Lack of control and being submissive in the face of stress may also result in negative feedback to the HPA axis. Lack of control has also been shown to be a factor in stress related health issues.

9. Increase flow, creativity, positive goals and uplifting events. The concept of flow is the mental state of being totally immersed in performing a motivating, creative, enjoyable activity, resulting in a feeling of spontaneous joy or rapture, and feeling energized. Flow most closely corresponds to the factors such as goals, enjoyment and motivation that appear to be important in recovery from ME/CFS. Multiple scientific studies have shown that people who have more flow experiences tend to be happier and suffer from less burnout. A study by Fred Friedberg found that uplifting events correlated with improvement in ME/CFS symptoms.

11. HRV monitoring. Heart rate variability (HRV) is linked to stress tolerance, and tends to reduce when overexerting or when there are excessive stressors. There are many apps and devices available to measure HRV, giving a heads-up that you may be over-exerting.

12. Therapy/counselling. While it is possible to recover without any outside help, many patients find counselling, therapy or coaching useful in helping them find the path to recovery. Cognitive behavioural therapy (along with graded exercise therapy) is the only official treatment for ME/CFS. While some people find it helpful, research shows that only a small percentage of patients actually recover using CBT. If you do use CBT, it is important to find a therapist who understands ME/CFS. There are many different flavours of CBT that are used for treating ME/CFS. Using CBT to help deal with stress (both from the illness itself, and from everyday stressors) is likely to be more helpful than CBT which simply tells the patient to ignore their symptoms. See the resources page for a list of therapists who are familiar with ME/CFS

See also Bruce Campbell's Keys to recovery and Fred Friedberg's 7 step protocol for more useful information about recovery from ME/CFS.

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DISCLAIMER: is an educational resource for chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), burnout and related disorders, and is not giving medical advice. Seek advice from a medical practitioner before making any changes to your life, or if you experience worsening symptoms. CFS is a diagnosis of exclusion, so it is important to rule out other causes for illness.