There is an appalling lack of funding into M.E. research, and the many claims of cures based on 'CFS' patient groups are not relevant whatsoever to those with M.E. But intelligent nutritional and other interventions can make a significant difference to a patient's life and can also reduce the severity of the disease to some entent. (See below for details.)
Appropriate biomedical diagnostic testing should be done as a matter of course (and repeated regularly) to ensure that the aspects of the illness which are able to be treated can be diagnosed, monitored and then treated as appropriate. Testing is also important so that dangerous deficiencies and dysfunctions (which may place the patient at significant risk) are not overlooked.
The foundation of any treatment program for M.E. MUST involve appropriate rest and avoiding overexertion however, if it is to have any chance at success. M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.
M.E. expert Dr Elizabeth Dowsett explains that prompt recognition and advice to avoid overexertion is mandatory in M.E. and that:
After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure.
Many people with M.E. are significantly or severely disabled. But what is so tragic about this high level of suffering is that so much of it is needless. The correct type of support (financial, medical and practical) can do much to prevent the physical, occupational and other deterioration in the quality of life for M.E. patients and can stabilise the illness. Many deaths from M.E. could also have been prevented if only those patients had been given a basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease.
To read or download an extended and fully referenced version of the above text, please see the What is M.E.? page.
M.E. patients that would like practical information on M.E. treatment are advised to read the following papers:
Additional relevant links: