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WHAT DOES ME FEEL LIKE?

How ME starts and the symptoms it brings

There is nearly always a "Trigger Event" for ME. It could be a Viral Infection, a hospital operation or an accident, but most sufferers can pinpoint when they first started having symptoms shortly after such an event.

Usually it starts with extreme fatigue. Not just tiredness that anybody can feel after a heavy night or through lack of sleep, but a drugged feeling. Your head spins, your brain is clouded (we call it Brain-Fog) and even the thought of sitting up is too much. Some sufferers have associated pain in joints or muscles, as if they have done eight rounds with Mike Tyson.

Because it usually follows (or is concurrent with) another illness, it can take some time to identify that this is something different. 

At present, there is no medical way of diagnosing ME, doctors have to rule out everything else first before accepting ME as a diagnosis. This means lots of blood tests and sometimes x-rays and scans to make sure you don't have Fibro-Myalgia or the beginnings of Multiple Sclerosis as these both present very similar symptoms.

Often, over time, sufferers can develop coping mechanisms (see our 'How to Cope' page) to help alleviate their symptoms but they will have good days and bad days throughout their time with ME. Some days they may be unable to get of bed and may sleep 23 hours a day, other days they may have almost normal energy levels. However, if the good days are overused and the sufferer gets carried away, in the excitement of energy being available, they always pay the price over the next few days.

ME can stay with a person for many, many years (30+) or it can last only a short time (1-2 years). It can go into remission for varying lengths of time and the sufferer can be completely restored until the remission ends, usually suddenly and with no discernable cause.

Finally, ME can disappear overnight. The sufferer can be completely restored with the only after effects being those to be expected from prolonged bedrest and /or lack of exercise.

ME is poorly understood by the public and is only just getting acceptance from the medical profession. It is met with scepticism and comments like "We all get tired when we've overdone it". However, ME is NOT just getting tired like everyone does. It is a specific medical condition. Recent campaigns such as the Missing Millions campaign run by MEAction have made great strides in educating the world about ME.


WLMESH hope that by running this website and providing help and support to sufferers, and their families and friends, that we can contribute to the wellbeing of millions of people with ME across the world.

 
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