THE BLOG

You Aren't Entitled to an Opinion on My Chronic Illness

05/11/2015 12:22 GMT | Updated 04/11/2016 09:12 GMT

I thought my media outrage was done for the week when Buzzfeed published an article that casually suggested people with disabilities are unattractive. Little did I know the front page of last Wednesday's Telegraph would scale new heights in Totally Overwhelming Nonsense.

The article in question reports on a study led by Professor Michael Sharpe of Oxford University into the role of Graded Exercise (GET) and Cognitive Behavioural Therapy (CBT) in patients with M.E./Chronic Fatigue Syndrome. It's proved controversial enough amongst sufferers who feel it undermines the physiological symptoms they face without the dumbed-down misinterpretation of these findings in both the Telegraph and the Daily Mail.

Both report that M.E. can be overcome by "positive thinking and exercise". The Telegraph even goes so far as to open with the words "Chronic Fatigue Syndrome is not a chronic illness."

I have been suffering with M.E. for nearly two years. If this is not chronic, I do not understand what is. M.E. is a long-term debilitating illness and misreporting of studies like this only fuels public misunderstanding of a complex and difficult disease.

No other illness is treated the way M.E. is. The public is given a stake not only in how it should be treated, but its very status as a recognised illness. No newspaper would put 'Hepatitis: Consider Milk Baths' on its front page, but debates about spurious treatments for M.E. continue to rage in print.

It's this attitude that leads well-meaning but misguided friends and family to routinely suggest new treatments. "Ooh M.E.! Someone I know knows someone with that. Have you tried not eating wheat? What about yoga? Or painting runes across your chest and running backwards around the garden in the mist?" These suggestions are hard to handle because you know they come from a place of love. It's like being surprised by a distant relative with a birthday present that turns out to be a dead frog. It's lovely to be thought of, but you've still given me a dead frog.

It's over two years since I first sought professional medical help for my symptoms. I've also spent the best part of those two years housebound with a high speed internet connection. There isn't a single thing that hasn't been tested for or that I haven't heard of and investigated. It may surprise you, but if you have read one article, you do not know more about M.E. than me or, more importantly, my doctors.

These articles woefully misunderstand what is meant by GET and CBT. They are not "positive thinking and exercise" as has been reported.. M.E. is a broad diagnosis and there will be some people who will, over time, benefit from these two therapies. I've just begun a course of Graded Exercise Therapy: it aims to slowly but surely build up my strength and, as a comparatively active sufferer, I have high hopes. But given that the most severe sufferers can't open their eyes in bed, illustrating articles with happy joggers is as relevant as illustrating them with a panda in a hat. I will keep saying this until people stop suggesting that you can exercise yourself better: you cannot walk M.E. off. It is not a big dinner.

As for positivity, the people with chronic illnesses I know are some of the most positive people you could hope to meet. Every time they go to work and volunteer, every time they cook a meal or change a bed, every time they face another doubting doctor or inaccurate article, they are telling a disease that could so easily get the better of them: "Not today." We are positive, resilient people with a deep desire to be rid of the weight of this disease.

To cap it all, YouGov ran an online poll asking whether people think M.E. is a real illness or not. Cheerily capped with a hashtag, they seem to have no idea how outrageous and offensive and slightly bizarre this is. You don't get to vote on facts: WHO recognises M.E. as a real disease and, strangely enough, I trust their estimation over Joe Public and his online polls. M.E.'s classification is not up for debate. It's a real illness whether Telegraph sub-headings or ill-informed pollsters say otherwise.

M.E. is hard enough to live with, but it is the bright sun around which revolves a planetary system of misunderstanding and misinformation. Media misreporting of this makes our already tough situations tougher - that's something it's difficult to remain positive through.