Sunday, 21 December 2014

What M.E is...and what what it isn't!

M,E (Myalgic Encephalomyelitis) is a neurological disorder and has been classified as this by the World Health Organisation since 1969.

Myalgic Encephalomyelitis translated means inflammation of the brain and spinal cord. M.E can affect people of all ages. M.E in the UK and in other places around the world is also referred to as CFS (Chronic Fatigue Syndrome) or M.E/CFS although most people with the condition don't like the term CFS as it implies that M.E is just fatigue and it's much, much more than that!

Currently there is no diagnostic test for M.E and getting a diagnosis usually involves tests and scans to rule out other conditions. There is also no treatment or cure for this illness. M.E isn't the same for everyone, people can have mild, moderate or severe M.E. It's estimated that 25% of people with M.E are severely affected often leaving them housebound or bed bound.

Many people have little to no knowledge about the illness which sadly includes many medical professionals! A lot of people remember it being referred to as 'yuppie flu' and think that having M.E means that you're just a bit tired. Others refuse to believe that the illness exists at all. Many people with M,E face a lot of judgement and disbelief by family, friends and professionals within the medical community.

M.E affects every bodily system and symptoms can include;

  • fatigue
  • cognitive dysfunction (often referred to as brain fog),which can include problems understanding and following conversations, trouble finding words,
  • problems with concentration
  • memory problems
  • Post Exertional Malaise (a worsening of symptoms after activity)
  • Sensitivities to noise, light and chemicals
  • problems with bladder and bowels
  • muscle pain, muscle spasms and involuntary twitching and jerking
  • sore throat
  • sore and swollen glands
  • confusion
  • nausea
  • dizziness
  • problems with being upright
  • difficulties with eating and swallowing
  • muscle weakness
  • sleep problems; difficulty getting to sleep, unrefreshing sleep, sleeping for excessive amounts of time, unusual sleep patterns, periods of insomnia
  • paralysis
There are literally something like 60 known symptoms that people with M.E can experience so I'll not list them all or you'll  be thoroughly bored and most likely falling asleep!
Some quotes on M.E;
”ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)"  Canadian ME/CFS Consensus

"Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” Hooper and Marshall

Sadly many people have had breakdowns in relationships with family and friends due to  lack of understanding, misconceptions and disbelief of the illness so have little/no support. My own family describe my debilitating neurological illness as "aches and pains".
M.E is not tiredness, it's not depression, people who are affected by the illness are not just lazy, it's not a case that we don't do things that we used to because we couldn't be bothered - we can't do them because we are ill and our bodies aren't capable of doing what they used to!

People with M.E often hear the same comments from people over and over again; 'you don't look sick' 'you just need to get more exercise' 'you're so lucky not having to work, being able to lye in bed etc' 'just push through it and try to get on with things' 'have you tried.........?'

We may not look sick but we are, it's an invisible illness so we can look fine but feel awful. Getting more exercise is not what we need, in fact exercising would actually make us feel worse. 
We don't work because we can't and it's not exactly like we're having a great time because our days are free without having a job! Lying in bed all day is not something we want, we have numerous horrible symptoms, extreme fatigue and need to rest - a day off and lying in bed might be nice for someone who is healthy but it's not as if we're lying relaxing, we are in bed feeling horrible. 
And yes if you have heard that x,y or z helps with M.E it's more than likely that we've heard it too and probably tried it as well as other numerous 'treatments' and 'cures' that don't work!

People with M.E have very limited energy and can get exhausted easily. It's human nature to want to push yourself and get on with things which the majority of people with M.E do, but this only makes our symptoms worse and often can cause relapses or progression of the disease.
 The only way that people with M.E can keep their health at a stable level or have an improvement in health is by pacing ourselves, balancing activity with rest, not pushing our bodies to do what it can't easily manage and getting proper rest and plenty of it!

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