Myalgic Encephalomyelitis

An estimated seventeen million people worldwide suffer from Myalgic Encephalomyelitis (ME). That's approximately one in every 400 individuals globally. They can be of any age, ethnic group, level of income, fitness or health, and of either gender.

Myalgic means painful muscles; encephalo refers to anything to do with the brain; and myelitis means an inflammation or infection of the brain and spinal cord.

It is an illness characterised by profound fatigue, muscle and joint pain, and impaired memory and concentration. Sufferers can also experience impaired cardiovascular function, gut disorders, and a host of sensory dysfunctions.

'ME is a complex disease involving impairment to the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function ...' [ME International Consensus Criteria]

Today ME is more commonly known as Chronic Fatigue Syndrome (CFS), or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

However this has created confusion in many minds, even those of health professionals. Is ME actually the same as CFS? Or, as some suggest, is ME a 'subgroup' of the 'umbrella' illness, CFS, or even a separate illness altogether. [See PDF comparison chart]

This is a genuine question, due to the fact that not everyone diagnosed with CFS exhibits the inflammation of the brain required for an ME diagnosis; a complicated and expensive diagnosis.

It was to overcome this confusion that a panel of 26 experts from 13 different countries came together in 2011. There goal was to develop definitive guidelines for identifying ME/CFS as an illness. Of note, there was complete agreement among panel members on the final criteria presented.

During the course of this symposium, it was decided that the term Chronic fatigue was misleading, and that Myalgic Encephalomyelitis a more accurate nomenclature. They explain why in their paper titled, International Consensus Criteria (ICC).

The goal is now to get International acceptance of these guidelines, part of which entails getting the name commonly changed from Chronic Fatigue Syndrome to Myalgic Encephalomyelitis.

However, this is not a verdict shared by other experts, who provide formidable argument that ME is a completely separate illness to CFS, with it's own unique symptoms and, most significantly, known cause - a virus.

The Hummingbird foundation is one such group, who dedicate their energies to promoting this understanding.

For those that hold ME and CFS as sharing similar if not the same categories, there is a desire to get 'fatigue' dropped from any descriptive title; believing that it belittles the illness by highlighting one symptom at the cost of other debilitating aspects.

It is the name Chronic Fatigue that has had much to do with why funding for research has been so hard to gain, and why sufferers are often considered as "just being lazy". People just don't take it seriously enough. They think it's all about being tired, and who hasn't been tired.

ME/CFS has attracted much controversy. For years many did not consider it an illness at all. Now though, through much research, there is overwhelming consensus that it is very real.

However, being trivialised for years due to the lack of scientific evidence, and often dismissed as the “yuppie flu”, ME still carries a stigma even within medical circles. Today, sufferers still endure that stigma of a poorly recognised illness, often treated with scepticism by family, friends, co-workers and the medical community.

Added to this, diagnosis remains a lengthy and expensive process, requiring the exclusion of other diseases with similar symptoms. Of course, this greatly increases the risk of misdiagnosis.

To overcome this, serious research over the past 20 years has focused on finding unique markers to help overcome these diagnostic difficulties. To date, research shows significant difference between the immune cells of healthy people and ME sufferers. Hopefully this will lead to the identification of examinable biological indicators (bio-markers) that can be used for diagnosis.

Other research identifies links between ME and poor functioning immune systems. Among other things, ME sufferers have reduced function of “natural killer cells” designed to kill off infected cells in the body.

Unfortunately, research is still in its early stages.

• It is less common in children than in adults
• Occurs more frequently in women than in men
• People of all income levels can develop ME/CFS
• It occurs most often in people in their 40s and 50s
• Occurs in every ethnic, racial group and country globally
• NIH, CDC, FDA and SSA recognise ME as a serious, often disabling illness
• Many pathogens such as the various mycoplasmas, Lyme disease, and Q Fever have been implicated in the causation or propagation of ME.
• Severe forms of ME can lead to paresis, seizures, intractable headache, cardiac irregularities and gastrointestinal malfunction with life-threatening complications
• Alongside TB and AIDS, ME has been declared a Priority 1 disease by the CDC
• 65% to 80% of people develop CFS suddenly (usually after an infection[s])
• A recent report has found ME is a debilitating as MS, RA and lupus
• Canada has a government department specifically for CFS

Most people with ME/CFS fall into one of four groups:

• Those who manage to return to completely normal health (small percentage)
• The majority, who tend to fluctuate between good and bad periods of health
• A significant minority remain severely affected
• A few, who show continued deterioration, which is unusual in ME/CFS

The following may help you appreciate my interest in this illness.

Early in 2013, I contracted Glandular Fever; commonly referred to as the kissing disease or Epstein–Barr virus. A few months later I was taken ill with mycoplasma pneumonia.

After fighting these illnesses off, I felt rather flat. However, rather than return to normal, my energy levels waned further. At first, I coped by napping upon getting home from work. The naps got longer and less refreshing, until I was arriving home exhausted, going straight to bed, napping restlessly only to wake the next morning unrefreshed. Still my energy levels declined. My work suffered. I was profoundly tired and weak, struggling to maintain normal levels of productivity. Frequently dizzy, I had chest pains, nausea and was often unsteady on my feet.

There was something seriously wrong!

By the time I sought out medical help, my life consisted of work and sleep, work and sleep. Weekends were spent in bed, and the rest of life was on hold. Understandably, I was way beyond concerned; but I was too exhausted to do anything about it.

And then, one evening, things climaxed. It was as if a plug had been pulled in my chest and all energy left me except what was required to breathe. It was a disconcerting experience, to say the least. I was taken to hospital with a suspected heart attack. Only to be released and told my heart was fine. But the episodes continued. It was frightening.

Being followers of alternative as well as traditional medicine, we approached the problem from both angles. My first visit was to a Naturopath. She ordered a gamut of blood tests, xray and recommended I see a GP. On top of these tests, my GP ordered an MRI and echo-cardiogram

Everything came back within tolerable thresholds. But I got worse, my symptom list expanding to include uncontrollable trembling throughout my body, neurological symptoms such as numbness and tingling, a sensation of fullness behind my ears and back of the neck, inability to concentrate.

Eventually, I was diagnosed with ME. That was three months ago. I am unable to work at present, having attempted to a number of times. Each attempt caused me to relapse into a worse condition; even when only doing two four hour days a week on light duties.

On a bad day I am bed-bound, a good day I can walk slowly through the house, but little more.This article I have written over the course of a month, when I was able.

I am one of only seventeen million, and I am better off than many of them.