Journal of IiME Volume 9 Issue 1 empathy, consideration and respect. Not to be told that their condition isn’t ‘real’. So let’s talk about those real symptoms I, and thousands of others, can tell you that CFS symptoms aren’t made up or imagined. In fact, I was ticking the CFS symptom boxes before I even knew what they were. I assure you that my muscle pain is very real – and I say this as someone who went through labour without any form of pain intervention. The headaches are real, as is the frequent dizziness that comes with a crash. The recurrent throat flare-ups (and ongoing low-level sore throat that never seems to disappear entirely), they’re real too. The burning feeling in the face; the tingling in the extremities; the leaden limbs; the crawling skin; the insomnia; the anxiety; the brain fog; the visual flickering; the neck pain; the regular bone-crunching exhaustion (think jet lag combined with running a marathon and a bout of flu). All these things (and more) are real. And you know what – CFS is such a giving condition that, sometimes, you experience a plethora of symptoms all at once. I can guarantee you that most CFS sufferers are facing at least two or three symptoms even on a good day. In fact, ‘good’ days are when you only have a few symptoms at a low level. Our good days would be your bad days. And let’s not even talk about what happens to your body if you get a common cold – it can wipe you out for weeks. In three years there have been a handful of days when I’ve felt normal. Entirely normal. Free from pain, awake, energised. I have felt like I’m walking on air – happy, positive and vital. Yes, your body cries, I remember now, this is how it feels to be well. And then it all comes to a screeching halt. If it’s all in the head, a lot of people are sharing one brain Recently, I found a GP who is prescribing Low Dose Naltrexone to help alleviate the symptoms of CFS. I did well on this for a while – it was the May 2015 first thing to ever make me feel relatively normal. However, about three months in, I had a huge crash. I called him and told him that, oddly, since I’d increased the dose it didn’t seem to be helping as much. He commented that he’d been hearing this a lot from patients. He said this is yet another reason why he knows that CFS is a genuine complaint – the very fact that the increased dosage is having the same effect on numerous people. Nobody who calls him knows this. Ergo, it proves that something is happening. In the 1980s, CFS was referred to as ‘Yuppie flu’ – although it’s been around far longer than that. There was an unexplained outbreak among nurses at the Royal Free Hospital in 1955. So either a large group of nurses suddenly came down with a fit of the vapours at the same time, or something’s at work here that we still don’t understand. Indeed, there was also an outbreak of these symptoms at the Los Angeles County General Hospital in 1934. And as far back as 1750, Sir Richard Manningham reported a syndrome referred to as ‘febricula’ (little fever). There have also been suggestions in the Lancet and the British Medical Journal that, upon returning from the Crimean War, Florence Nightingale spent years housebound, too fatigued to take visitors. Now she’s not the type of woman who strikes me as having been a malingerer. In fact, many consultants will tell you that ME often affects those people who are the most driven – workaholics; people who’ve studied for degrees; those who have a can-do attitude. Certainly, the medical profession now recognises CFS as a real condition – even if they don’t know what causes it or how to treat it. The most recent evidence indicates that there’s a difference in the brain scans of those suffering from CFS http://www.webmd.com/chronicfatigue-syndrome/news/20141030/brain-scansyield-clues-to-chronic-fatigue-syndrome. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 37 of 57
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