ME is not a very useful term. Myalgic Encephalomyelitis derives from Ancient Greek. Myalgic meaning painful muscles and fibres and Encephalomyelitis meaning inflammation of the brain and spinal cord. Those labelled with ME rarely have actual evidence of brain or nerve inflammation, so it is simply a label and not a very descriptive one at that.
ME is not a specific disease or condition and is generally a ‘diagnosis of exclusion’ – one given when no definitive disease can be found. It is more commonly called chronic fatigue syndrome (CFS) nowadays.
There are no conventional tests commonly used in the NHS to ‘prove’ that someone has ME/CFS. Conventional treatment is based on advice to take antidepressants, get plenty of rest and do graded exercise – as much as you can handle but no more.
Most doctors haven’t yet caught up with the emerging science behind what causes CFS. There are few studies which look at why some people develop profound fatigue that can last for months or years. Drug companies, which fund many large clinical trials, aren’t really that interested in CFS, which has so many possible contributory factors, because there is no simple drug to prescribe.
A leading, emerging theory is that cellular mitochondria, the power houses of the cell, could be working less efficiently than they should in patients with CFS, but there are no known drugs that influence mitochondria. Hence, no studies.
We do know that around one in 10 elite athletes, or people who enjoy frequent very active exercise, will develop CFS at some point. This is much higher than the general population. People more at risk from developing CFS do tend to suffer more from mental health problems such as anxiety and depression but that may be because the nervous system is so dependent on mitochondria that individuals cannot keep up the production of the calming hormones.
CFS patients are also more likely to have been exposed to environmental pollution. There is evidence of a link to chronic infections, many of which supress the immune system. There is also evidence of a direct links between CFS and the microbiome (healthy bowel flora) in the gut, which we know plays a huge role in keeping our nervous and immune systems healthy.
I believe that we doctors are underestimating the prevalence of hypothyroidism in the community, which impacts on immunity, energy production and our nervous system, and I also think we have widespread Vitamin B 12 deficiency.
My approach as an Integrated Doctor, one who uses conventional methods as well as alternative therapies, is to look at the individual and assess all aspects of his or her emotional and physical health. This includes life style, exposure to environmental toxins, stress levels, diet and underlying disease. Testing mitochondrial function through a simple blood test is, in the face of the emerging evidence, of great importance in diagnosing CFS.
Only then can I decide on how to treat the patient and begin to make physiological and emotional changes needed to reverse the effects of CFS.
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