ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD-10 G93.3), which includes CFS [since 1992], is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder. So, under the WHOs ICD-10 classification of G93.3 we find post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome, all classified under 'Neurological'. There is a problem however, as not all countries use this latest ICD-10. In the United States of America, the ICD-9 is still used, which does not include chronic fatigue syndrome in this diagnostic category as most other countries (including Canada) do. When the new ICD-10 CM are introduced in the States in 2013, it is the plan so far to keep CFS and PVFS/ME mutually exclusive, meaning you can't have both CFS and ME, much to the dismay of patient group and ME/CFS advocates.
ME/CFS most often has a sudden onset due to viral infection, exposure to environmental pollutants, immunizations and anesthetics. Often, initial symptoms from the above triggers do not fully recede, and the myriad neuroendocrineimmune symptoms of ME/CFS start to express themselves. Every case of ME/CFS is unique in symptom constellation, severity and progression.
ME/CFS is a diagnosis of exclusion. Diseases that may present similarly must be ruled out and the patient must meet all 7 criteria cited under the clinical definition of ME/CFS from the Canadian consensus document by Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI; Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome 11(1):7-116, 2003; Haworth Press Inc. To order a copy please contact Haworth Medical Press:
1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period – usually 24 hours or longer.
3. Sleep Dysfunction: There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
4. Pain: There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. The pain may also have neuralgic qualities. Often there are significant headaches of new type, pattern or severity.
5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory- e.g. photophobia and hypersensitivity to noise – and/or emotional overload, which may lead to “crash” periods and/or anxiety.
6. At Least One Symptom from Two of the Following Categories:
a) Autonomic Manifestations: orthostatic intolerance – neurally mediated hypotension, postural orthostatic tachycardia syndrome, delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
b) Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change – anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.
c) Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.
The illness must persist for at least 6 months to be diagnosed as ME/CFS, although a preliminary diagnosis may be made earlier.
There are numerous statistics out there regarding recovery. Children recover more quickly and fully than adults. I hesitate to report on statistics for a few reasons. Firstly, if you’ve ever taken a course on statistics, the first thing you learn is that they lie. It’s just their nature. Secondly, all stats we have today are derived from ‘yesterday’ - a time when people with ME/CFS did not have a lot of knowledge, resources or options in healing modalities. Today, there is so much information available and so many new methods of healing (mostly ‘alternative’), and much better access to various therapies that were unheard of even a decade ago that I feel that the statistics of yesterday no longer apply to the patients of today to a great extent. Personally, I know five people that have fully recovered. It is often said that the earlier the diagnosis, the better your chances of recovery. In my case, I was diagnosed in less than a year. This is very fast compared to those who wait several years. Yet, it didn’t stop me from doing fairly well for a few years before nose-diving into a realm where I couldn’t speak, listen, use my sight or move...In group therapy, my doctor often said, “I know you guys are really sick, but think back to when you first got sick and don’t forget how much worse that was”. Huh? For me, it was the opposite. So, my perspective is that you never know the course your ME/CFS will take (no matter what physicians may tell you); that it’s possible to heal, under the right conditions, from even the most profoundly severe case (no matter what you tell yourself), and that you shouldn’t allow stats to influence you too much (no matter what anybody tells you) ... Please read about Mike Desssin's address to the CFSAC (including his recovery from death's door) under the 'Advocacy and Awareness' tab in the menu. It's miraculous.