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UNDERSTANDING MYALGIC ENCEPHALOMYELITIS (ME)
What is ME?
Myalgic Encephalomyelitis or Chronic Fatigue as it is also known is a complex chronic disease. It is believed to be brought on by an infection, usually viral and its horrendous symptoms can attack and affect many parts of the body. This chronic illness affects millions of people across the world. It affects the autoimmune system and is devastating physically and mentally.
25% of people with M.E are bedbound, unable to care for themselves. This disability robs them of their lives and the lives of those caring for them.
Severity can be mild, moderate, severe and very severe. All sufferers are individuals and symptoms differ.
Symptoms can include
• Severe muscle and joint pain
• Sleep problems (sleep reversal)
• Severe headaches
• Sore throat, severe cases unable to swallow at all
• Fast heartbeat, heart palpitations
• Brain fog, lack of concentration, problems thinking or remembering
• Flu like symptoms
• Sensitivity to noise and light
It’s important to know that these symptoms can vary from day to day, hour to hour or a person with ME can go downhill quickly if they have over exerted themselves. Those with sever ME could find a task such as cleaning their teeth completely exhausting and this could easily wipe them out for the day or even longer.
Help and Support
The ME community is largely unsupported by the government and parts of the medical community. Sufferers often feel let down, disbelieved, and desperate. They suffer a lifelong condition with no treatment. Some patients with ME have ended their own lives due to the immense suffering they have endured. Disbelieved, disregarded and forgotten!
My opinion and experience
A patient with ME deserves, compassion, understanding, to feel heard, listened to, empathy, not to be pushed and most of all to be believed. They are the ones suffering this heinous disability, they are the ones in pain constantly, they are the ones who know what is right for them. It may surprise you to know that ME has directlly killed two people (those that I am aware of), one of whom was placed in a mental hospital which is said to have caused her death. But for those who live with this condition, there is no rest from the pain and suffering.