What’s it all about?

What on earth is Myalgic Encephalomyelitis?! What a mouthful that is!

Some of you reading this maybe new to this disease and so I thought I would give a little insight for you.

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of  the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.

All people with ME experience a substantial loss of physical or cognitive functioning, but there is a  spectrum of severity.

The typical ME patient scores more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers.

Onset can be either sudden or gradual, and the intensity or frequency of specific symptoms can wax and wane. While symptoms can fluctuate significantly from day-to-day, shifts in overall wellness should be measured in years, not weeks or months.

An estimated 15-30 million people around the world are suffering from ME.

An estimated 75-85% of them are women and 80-90% of them are undiagnosed.

While there is no single laboratory test that can diagnose ME, patients have consistent biological abnormalities demonstrated in research settings. Many specialist physicians use these tests to aid in forming a diagnosis, although the diagnosis is at present most frequently made by excluding other conditions that cause similar symptoms and by using one of several diagnostic criteria. Due to lack of education and awareness about ME, many patients are undiagnosed, or misdiagnosed with other conditions.

And yet…even with all this there is insufficient funding, insufficient research and millions are left suffering behind closed doors with no help and no cure.  In this day and age surely something has to be done?!

There are sooooo many symptoms to this disease and unlike anything else every person experiencing it will have different symptoms and react differently to different situations.  It is like it tests you at every level and affects you every minute of every day.

However, the core symptom of ME/CFS is profound and disabling fatigue, which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest.

Some of the other symptoms are :-

  • Post-exertional malaise or symptom exacerbation
  • Activity-induced muscle fatigue
  • Cognitive dysfunction
  • Pain
  • Sleep disturbance
  • On-going, flu-like malaise
  • Autonomic symptoms
  • Disequilibrium and problems with balance
  • Disturbed thermoregulation
  • Sensory disturbances
  • Hyperacusis, tinnitus and/or photophobia.
  • Headaches of a new type, pattern or severity. Migraine headaches are reported to be more common in ME/CFS
  • Shakiness but not tremor
  • Arthralgia – which may be widespread – but not including swelling, redness or joint deformity
  • Irritable bowel syndrome-type symptoms
  • Nausea and other upper gastrointestinal symptoms

The list goes on and on, there are so many and even more for the severely affected patients.

So…as you can see it really is not a case of just being a bit tired!

If you wish to research more about M.E. there are websites that can help you:-

http://www.meassociation.org.uk

http://www.meaction.net/uk/

May you never need these websites

and may you never have to endure the life sentence of M.E.

Gentle Hugs, Faith, Trust & Pixie Dust x

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