Journal of IiME Volume 9 Issue 1 May 2015 THE TRUE BATTLE WITH CHRONIC FATIGUE SYNDROME by Dena Graham For an illness that boasts such a myriad of symptoms, you might think that the Chronic Fatigue Syndrome battle starts and finishes there. Each day is a challenge – some more than others. And just when there seems to be a glimmer of light, a temporary ‘remission’ of symptoms (or at least a waning of them), it rears its ugly head again. The first year, for many, is taken up with visiting GPs and specialists, trying to find answers. Surely it’s not normal to be so ill, so often. And then, when the diagnosis of CFS (sometimes also known as Myalgic Encephalomyelitis (ME)) comes back, there’s the inevitable temptation to take to the internet, trying to understand this complaint and find a ‘cure’. All this when, some days, you can barely lift your head off the pillow. That should be battle enough. Except, for many CFS sufferers, the true battle begins when it comes to other people’s perceptions of it. To be so ill, yet dismissed by so many, is a harsh blow. Worse when it comes from people who you think ought to know you better. The battle begins I can’t say exactly how long I’ve suffered from CFS – it certainly pre-dates any diagnosis and has gone on for at least three years; starting with recurrent throat and ear infections that became more frequent; and the after-effects of which lasted longer. I used to say to my mother that it felt as though there was something ‘evil’ inside me. I didn’t mean this in any paranormal manner – but I wasn’t using it as a metaphor either. I simply felt as if there was a something insidious creeping through my body, wreaking havoc. It wasn’t normal to feel like your life force was ebbing; and then reach a point where you actually wished you were dead, just so the pain and exhaustion went away. I finally received a diagnosis about two years ago, after seeing a number of specialists. For anyone who believes that CFS sufferers are malingerers, actively seeking such an unspecified diagnosis, I can assure you that this isn’t the case. Not for me, nor for the majority of CFS sufferers. Of course, that’s not to say that a handful of people aren’t (in the same way that some people may fake whiplash for their own personal means). However, for most people with CFS, that diagnosis is not a positive one. It’s an answer without a solution. I wanted, desperately, to be told there was a problem with my thyroid; a sinus issue; there was even a point, God help me, when I wished to be diagnosed with a minor, treatable form of cancer – because at least then there would be the hope of a cure. When I received the CFS diagnosis, I was told to go away and accept it. The consultant, who specialised in this area, had seen enough patients to realise that this is not the diagnosis people want, nor accept lightly. It leaves them foundering without any medical direction and they inevitably continue to look for answers. Once that diagnosis comes in, you’re on your own essentially. Not because the consultants don’t believe it exists – but because they don’t have anything to offer in the way of treatment. And so begins a long road of medical denial and frantic research. You try one route after another in the hope of vanquishing this unfathomable complaint. For me, that began with cutting out meat; cutting out dairy; cutting out sodas and only drinking water or herbal tea; whipping up green smoothies; Beta Glucans; Amitriptyline; Chi Machines; Allicin; salt pipes. Believe me, the list was endless – and continues to this day. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 34 of 57

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