ME/CFS is a serious long-term illness.\r\n It affects people of all ages, ethnicities and both male and female.\r\n Overseas studies suggest the prevalence of ME/CFS is 4 in 1000 people,\r\n implying that there are 20,000 people affected in NZ.\r\n Therefore, it is considerably more common than illnesses such as Multiple Sclerosis.\r\n
\r\nThe causes and the specific pathologies of ME/CFS aren’t yet understood. It often starts after an infectious illness such as glandular fever. Researchers are finding issues with energy production, blood circulation and oxygen use.
\r\nPain is very common in people with ME/CFS and may include:
\r\nSome people with ME/CFS may also have:
\r\nThe following 3 symptoms are required for diagnosis:
\r\nIn addition, at least one of the following:
\r\nYour doctor may:
\r\nCurrently there is no cure or proven treatments for ME/CFS. Graded Exercise Therapy is no longer recommended.\r\n Appropriate management of the symptoms can provide some relief and improve quality of life.\r\n Over time some people, especially children and adolescents, do experience partial or full recovery.
\r\nSome people choose to seek out alternative therapies however these are unproven and often costly.\r\n Please consult your GP before starting any alternative therapies or supplements as they may be harmful.
\r\nThe main management approach is reducing activity to a level that can be sustained and that avoids Post-Exertional Malaise (the crash that results from too much exertion).\r\n This may mean replacing school with distance education, or reducing hours worked, as well as using energy saving approaches like online shopping.\r\n
\r\nGiven that your energy is limited, plan so that you can spend it on the activities that are most important to you.\r\n Planning to rest before and after an activity can reduce the risk of PEM. Pacing yourself to avoid PEM is one of the most important ways to manage ME/CFS\r\n
\r\nFind a doctor you trust to work with you. He or she may be able to help with pain, sleep problems and orthostatic intolerance (problems with being upright),\r\n avoiding de-conditioning and managing food sensitivities as well as arrangements for home care, financial support and counselling.\r\n
\r\nME/CFS is not easy to cope with. Make sure that you have people to help you. Our monthly support group or online groups can put you in touch with people who understand.\r\n If you are concerned about your mental health consider seeking professional support for this. Cognitive Behavioural Therapy is not a cure for ME/CFS but can help establish good coping mechanisms.
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