ME is not just fatigue; neurological symptoms may be worse. Memory, mood, concentration, speech, counting, sensation, balance, vision, hearing, sleep, temperature, appetite, hormone production and response to stress can all be affected. Don't worry that you are going mad; this is part of the package.
To facilitate diagnosis, ask early for routine laboratory tests. Play safe prior to official diagnosis. Many ME sufferers deteriorate through pushing themselves too hard.
If your doctor diagnoses "Chronic Fatigue Syndrome" ask if he will call it "CFS/ME" as recommended by the National Task Force. CFS on its own covers numerous conditions.
Keep daily notes of symptoms for medical consultations and as evidence for insurance or benefit claims.
For pain or headache avoid non-steroidal anti-inflammatory drugs, eg aspirin or ibuprofen, especially in children.
Move carefully to avoid accidents due to lack of co-ordination.
Learn to manage so-called panic attacks. If panic begins, distract yourself. Phone someone, make a drink, talk.
Eat foods that won't irritate the gut, such as well-cooked vegetables and easily absorbed protein, like white meat and fish. Carbohydrate is essential; potato is an excellent source. You may develop food sensitivities, especially to grains (often wheat) or dairy products. Avoid too much fibre or sugar.
Consider having your digestive ability tested. Many ME victims have low or no stomach acid (possibly as an after-effect of a gut virus or vaccine). After testing for this and, when necessary, sorting out stomach acid problems, many patients improve.
Avoid alcohol. Smoking is particularly bad, affecting heart, respiratory and immune systems.
Don't be persuaded into therapies your body protests against. Polio victims should have been rested and helped to pace their lives; ME sufferers need similar treatment to avoid further disability.
Be wary of regimes, whether orthodox or alternative, promising a cure. There is no proven cure for ME, just as there was none for polio. Nevertheless, certain treatments may help symptoms and aid recovery.
ME can be a relapsing condition. Avoid triggering factors, such as immunizations, or too much mental or physical activity.
Children with ME frequently need home tuition. Full-time schooling often provokes relapse. Part-time attendance helps; restrict exam subjects and avoid PE.
Never assume that your ME has totally gone, even if you are symptom free. Evidence shows that "Post-ME" occur many years after initial infection, like Post-Polio. Pace your life; don't overwork a body that may have as yet unrecognized brain problems.