A Hummingbirds' Guide to M.E.

Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3.

M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.

M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio).

M.E. can be extremely severe and disabling and in some cases the disease is fatal.

Is Myalgic Encephalomyelitis a new illness?

No. The illness has been documented as an organic (physical) neurological disease for centuries. The name M.E. was coined in 1956 in the UK.

Myalgic Encephalomyelitis has nothing to do with ‘fatigue’

M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of ‘chronic fatigue.’ Fatigue is not a defining (or even essential) symptom of M.E. M.E. and ‘CFS’ are not at all the same thing.

As Professor Hooper explains: ‘A political decision was taken to rename M.E. as "CFS", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored.’

Public, medical and governmental understanding of M.E. is huge mess, that is for certain – but it is not an accidental mess, that is for certain too. (See: Who benefits from 'CFS' and 'ME/CFS'?)

All each of the flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’

A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis.

What is Myalgic Encephalomyelitis? What is its symptomatology?

M.E. is characterised primarily by damage to the central nervous system (the brain) – initiated by an enteroviral virus infection – which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis.

M.E. symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. These symptoms are exacerbated by certain levels of physical and cognitive activity, sensory input and orthostatic stress. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death. Symptoms of M.E. include:

What does cause Myalgic Encephalomyelitis? Are there outbreaks?

There is a history of recorded outbreaks going back to 1934, a review of early outbreaks found that clinical symptoms were consistent in over 60 recorded epidemics of M.E. spread all over the world. M.E. is an acutely acquired neurological illness (with systemic effects) initiated by an enteroviral infection. This point of view is supported by history, incidence, symptoms, similarities with other viral illnesses and a large body of medical research spanning many decades.

So what do we know about Myalgic Encephalomyelitis so far?

There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. More than a thousand good articles now support the basic premise of M.E. Whilst it is true that there is as yet no single laboratory test which can diagnose M.E., there are a specific series of tests which enable a M.E. diagnosis to be easily confirmed (MRI and SPECT scans of the brain for example).

Some of the abnormalities found in M.E. patients include: extremely low blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in M.E. brains resembling those of multiple sclerosis patients, sub-optimal cardiac function and abnormal cardiovascular responses, persistent viral infection in the heart, severe mitochondrial defects and significantly reduced lung functioning.

Strong evidence also exists to show that (even mild or moderate) exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused, as well as disease progression and there have also been deaths. This is why the exercise programs being ‘recommended’ or sometimes forced on M.E. patients (including young children) to treat their supposed ‘chronic fatigue’ are so dangerous and harmful as to amount to legalised torture. Patient accounts of leaving exercise programs much more severely ill than when they began them (wheelchair-bound or bed-bound or needing intensive care) are common. Sudden deaths have also been reported in M.E. patients following exercise.

How common is Myalgic Encephalomyelitis and who gets it?

M.E. has a similar strike rate to multiple sclerosis. M.E. affects more than a million children as young as five, teenagers and adults. It affects all races and socio-economic groups, and has been diagnosed all over the world.

Recovery from and severity of Myalgic Encephalomyelitis

M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. It can also be fatal. 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. is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of sufferers leaving many of them housebound, bedbound and severely disabled. One specialist found that M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest.

Truly M.E. can be one of the most devastating and horrific illness there is, yet many with M.E. are subject to repeated medical abuse and neglect because of the way the illness has been dishonestly ‘marketed’ to the public as being psychological or ‘behavioural,’ or as being a problem of mere ‘fatigue’ or a ‘fatigue syndrome.’

Sub-grouping or refining or renaming ’CFS’ will only waste another 20 years. There is no such distinct disease/s as ‘CFS’ – that is the entire issue. For the benefit of all the patient groups involved; the bogus disease category of ‘CFS’ must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E.

Due to an overwhelming amount of compelling scientific evidence, the World Health Organization correctly classified M.E. as a distinct organic neurological disease in 1969 – this classification/definition and name must be accepted and adhered to in all official documentations and government policy.