What is Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/MA) and fibromyalgia (FM) and do I have it?
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/MA) and fibromyalgia (FM) are closely related and severely disabling illness that have proven extremely difficult to treat. Despite nearly 20 years of research, no consensus has emerged on the cause or treatment, and the understanding of these conditions remains frustratingly elusive.
Even management programs have proven controversial and not broadly applicable. Graduated exercise programs and CBT, though widely touted as "evidence-based" are unhelpful for most of the patients I see. Graduated exercise program research was conducted only on the small subset of sufferers who were able to engage in such a program (arguably the less severely affected). The results of its forced use in people with severe CFS/ME and fibromyalgia has more frequently been a worsening rather than in improving symptoms of the condition.
Cognitive behavioural therapy (CBT) has had an unfortunate history of never being scientifically validated, and its application in these conditions have been poorly formalised and inconsistently implemented. CBT has proven to be, like a good prostitute, whatever the practitioner wants it to be :-) It has helped some people, but fortunately it is now being displaced by traditional and far more useful practices such as mindfulness and meditation.
Do I have CFS or ME
For nearly 20 years, CFS/ME has been defined as persistent and disabling fatigue of more than six months duration, for which no other medical cause is found. As well, the person must suffer four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue: impaired short term memory or concentration; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without arthritis; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.
One emerging view is that the "old" term, myalgic encephalomyelitis (ME), may have been closer to the mark than anyone suspected. For people with severe post-exertional fatigue and for patients with fibromyalgia there is evidence of neuroinflammation with alterations of grey matter identified in nuclear medicine scans and other imaging techniques. This is a low grade, long-term inflammation involving the microglia, immune-like cells that surround and nourish and protect the actual nerve-cells (neutrons) of the brain.
Recognition of the seriousness of these disorders, and the biological and neurological consequences of failing to take them seriously, has led the US FDA to nominate CFS/ME as a significant disease, and state:
"CFS/ME is a serious disease and there are no approved therapies indicated to treat CFS/ME. The lack of approved therapies indicated for the treatment of CFS/ME represents a public health concern"
My Practice is strongly focused on CFS/ME, and my approach is to break the illness down into manageable segments by addressing genetics, environment, the gut microbiome, inflammation, nutrition and ultimately the support and active treatment of the sufferer and improvement of function and resilience.
I presented an outline of my approach to Toxicity in CFS at the 2014 AIMA Conference.
