Exeter, Devon UK • Sep 25, 2023 • VOL XII
Exeter, Devon UK • Sep 25, 2023 • VOL XII
Home Comment Chronic illness – making the invisible visible

Chronic illness – making the invisible visible

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WHEN someone says M.E. or Chronic Fatigue Syndrome (C.F.S), what do you think? Do you think ‘it’s psychological’? Do you think ‘people are making this up’? Maybe you don’t think anything at all. You can decide amongst yourselves which might be the most harmful. When I think of M.E. (Myalgic Encephalomyelitis), I think of a struggle to be recognised, heard and understood, a battle perpetuated by a – be it conscious or subconscious – numbness to the pain of those suffering visibly and invisibly one of the mysteries of 21st century medical science.

Having been diagnosed with Chronic Fatigue Syndrome and Chronic Pain in 2013, but making almost a full recovery, I began university last year with delight, excitement, and a little apprehension. Me, being me, wanted to live the ‘socially acceptable’ Freshers’ life, joining a sports club that had training pretty much every day, partying up to five times a week, and then remembering I actually needed to pass the first year. Stubborn old me also decided it would be a great idea to ignore any symptoms. Today, whilst I am still as keen for a night at Cheesy Tuesdays as the next person, have just returned from a sports taster session, and am undertaking the BNOC challenge of being my course’s Social Sec, I sit here wondering how many of my fellow students are suffering.

Image: Pxhere

At least 250,000 people in the UK have been diagnosed with the condition. Although it can affect children, men and the elderly, it is particularly common in women aged 20 to 50. M.E./CFS’s symptoms have a variable phenotype from person to person – a bit like their own unique fingerprint – but often share similarities, with post-exertional fatigue usually unrefreshed by rest widely quoted as the most debilitating of the symptoms. This, I stress, is not just feeling hungover after a bit of a heavy one.

Often, persistent post-exertional fatigue can confine those suffering from M.E. to several days in bed after simply attending a day of lectures.

Other symptoms such as general malaise, or flu-like symptoms, intense muscle and joint pain, reduced concentration ability, headaches can present alongside the fatigue. Frustratingly there is no single cause that’s been conclusive in medical research, however, many patients recall a trauma or an infection, like glandular fever, leading to their symptoms. Illnesses often spread through university halls (and not just freshers’ flu). University can be a chaotic time, and a time of considerable change in a student’s life. Physical illnesses can be caused by stimuli that put the brain and body under stress (M.E. is definitely NOT psychological).

As a result of this, and the multitude of symptoms, M.E./CFS diagnosis requires a variety of tests, such as scans and blood tests to rule out other conditions, with no definitive test. Similarly, treatment is often erratic and sparse because of insignificant funding from the NHS and out-of-date NICE guidelines (thankfully being re-written), and highly controversial amongst the M.E. community due to scientifically flawed research.

But there is hope. More research than ever is being done into the cause of M.E. to help the thousands that are suffering at UK universities, and the millions beyond. From the immune system to genetics, biomedical research is being conducted worldwide into the cause, and an eventual cure for a condition that can leave many previously-healthy individuals bedbound for years at a time. Closer to home, Exeter is surprisingly well set up for those suffering from fatigue, whether M.E./CFS or as a result of other conditions, with a brand-new Fatigue Social Group meeting in Devonshire House weekly and individual learning plans.

So if you or someone you know is struggling with extreme fatigue, remember it’s not just freshers’ flu.

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