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8th August: Understanding Severe ME Day

Myalgic encephalomyelitis, ME, or Chronic Fatigue Syndrome, is a debilitating condition not helped by lingering prejudice against people with the condition. There are still many myths that exist about it, the most common being that it’s simply a form of burnout. It was that belief that led to the coining of the term “Yuppie Flu”. Thankfully, we have moved on from assuming that ME is simply laziness, stress, burnout or an imaginary condition, but it is still largely misunderstood.

What is ME?

The main reason it is still misunderstood is that no root cause has ever been discovered. Many biological, neurological and psychological causes have been proposed, examined and rejected. We do know that the fatigue that ME sufferers experience is unrelated to over-exertion. Rest, rehabilitation and simply taking a break have little impact on the symptoms. Without physical indicators, diagnoses of ME can be difficult and is based purely on the reported symptoms of the condition:severe me awareness day

• Loss of muscle strength and severe physical weakness, including occasional paralysis
• Joint and muscle pain during mild physical exertion
• Struggling to concentrate or remember things
• Tenderness and swelling in the joints
• Sleep problems including insomnia and/or hypersomnia
• Sensitivity to sound, light and other sensations

We know that it affects the nervous system with some abnormalities recorded in the immune system. Its similarity to other medical conditions such as multiple sclerosis and fibromyalgia makes diagnoses especially problematic.

8th August: A Day for Understanding & Remembrance

There is already an International ME Awareness Day in May, but ME charities in the UK feel that a day of remembrance for those who have lost their lives to this little-understood condition is still required. It began in 2013, the brainchild of a mother of a child with ME. It was chosen because it was the date of death of a 32-year-old woman who died from the condition in 2005. Many believe her death was a result of prejudice and ignorance about ME.

It was adopted by the UK’s largest ME awareness charity, the 25 percent ME Group, in 2013 and has had successful campaigns ever since. Although there is a long way to go in the diagnosis and treatment from a medical point of view, the day has been fundamental in challenging the prejudices about people with ME. Since the condition first became known in the 1980s, it was treated with a great degree of derision – held up as some kind of fad condition for the rising middle classes. It quickly acquired the nickname “Yuppie Flu” in the media, with a strong implication that it was little more than burn out from a combination of overwork and a lack of fortitude. There was also some suggestion that it was an imaginary condition used as an excuse for lazy people, or a psychological illness with physical symptoms.

Yet “Yuppies” were not the only victims of the condition – it affected the unemployed and even children, groups not typically associated with burn out or severe stress with more female sufferers than male. A potential medical breakthrough came two years ago when it was discovered that ME sufferers had abnormal immune systems. It’s hoped that tests will eventually follow.

The 25 Percent Group

For most people, ME is only mildly debilitating. However, for around 25% of patients, it is severe. It is this group – whose condition is debilitating – that the charity wishes to acknowledge and promote. We have come a long way in nearly 30 years to dispel the myths about the condition, but now we need an even bigger push so people understand just how restricting this condition can be. There also needs to be a medical drive to help the general population to finally dispel lingering myths about the condition and treat it not as a mental illness with physical symptoms, but as a physical condition.