ME/CFS

Myalgic Enchephalomyelitis - catchy name isn't it? A few years into this illness and I can just about pronounce it. For obvious reasons it is most commonly referred to as ME. The condition is also known as Chronic Fatigue Syndrome (CFS) but many with the illness prefer to use ME as they feel CFS only focuses on one of the many symptoms associated with this condition. Personally I use the two terms interchangeably or the hybrid ME/CFS

ME/CFS is a chronic fluctuating illness affecting the major systems within the body, most commonly the central nervous system. immune system and endochrine system. This results in chronic fatigue/exhaustion and numerous other debilitating symptoms.

Every person with ME/CFS has different symptoms and these can be incredibly wide ranging both in type of symptom and severity. Here are some of the most common ones;
  • Fatigue - persistent and overwhelming tiredness which is experienced as both physical and mental exhaustion
  • Flu-like symptoms
  • Recurrent sore throat and swollen glands
  • Pain - aching muscles, nerve pains, headaches/migraines, abdominal pain
  • Sleep disturbance - unrefreshing sleep, insomnia, dreamy/restless sleep
  • Concentration, thinking and memory - reduced attention span, short term memory problems, inability to concentrate, word finding difficulties 
  • Problems with nervous system - dizziness on standing up, poor temperature control, sweating, loss of balance
  • digestive problems - nausea, loss of appetite, excessive bloating, cramps
  • intolerance - odours/lights/sounds, some foods, alcohol and medications
  • Mood - anxiety, frustration, depression 
It is not fully understood what causes the illness but it is often a viral trigger such as the glandular fever virus. Other triggers include; non viral illnesses, environmental factors and less commonly, vaccinations and physical trauma.

Diagnosis is a process of elimination - there is no one test for ME, you are tested for every other possible cause of the symptoms and if nothing abnormal is found the diagnosis of ME/CFS is given.

And the cure? There isn't one i'm afraid. Treatment is provided to manage some symptoms such as pain and sleep disorders. I attend a specialist NHS ME/CFS clinic to help with energy management.

Prognosis isn't great, this isn't something that will go away in a couple of months. If someone has ME it is likely to impact on their life for a number of years, if not the rest of their life. It's not all doom and gloom though, many people find their symptoms improve enough to live a fairly normal life. At the ME clinic I attend of the people they treat 30% recover completely, 30% see their symptoms dramatically decrease and 30% stay about the same.

If you feel like you may have ME/CFS or have any of the symptoms listed above please go and speak to your GP.

Further information and resources can be found at Action for ME. 

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