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We've all had long, tiring days where we cannot wait to get home and collapse into bed, but imagine if you felt like this every minute of every day and simply getting out of bed becomes an impossible task. This is known as chronic fatigue syndrome (CFM). Although recognised as a medical condition, its name, treatment and diagnoses have doctors, researchers and patients alike in an on-going debate. Also known as 'ME' (myalgie encephalomyelitis) and more recently 'SEID' (systematic exertion intolerance disease), it causes a constant feeling of tiredness and exhaustion, which affects everyday life, and does not go away with sleep or rest. Other symptoms have also been noted as feeling feverish, having aching muscles and joints and depression. Its cause is unknown, but it commonly arises in sufferers after they have been ill or fighting a virus. People have recovered from their particular illness, but find they may constantly be tired afterwards for an unusually long length of time. Teams of researchers have tried to discover the cause, which has resulted in believing it could have come from anything from a bacterial infection (as well as a virus) to problems with the immune system, an imbalance of hormones as well as psychiatric problems arising from stress or emotional trauma. However, all of these causes have not been proven and are often still debated. A recent theory is that a combination of triggers such as genetic, environmental or physiological problems, which can throw the body's nervous system out of balance, could be the problem. One thing is for sure, chronic fatigue syndrome is now a well-known condition that will be recognised by a medical practitioner if you think you may suffer from it. banner_18Nov16_2 Chronic Fatigue Syndrome was first identified in the 20th century after a mystery epidemic struck people down with severe weakness and tiredness in vast numbers. Doctors were initially baffled at the outbreak of the unexplained illness. However, once they started to recognise the symptoms and other cases were reported around the world, doctors were able to treat it as a severe medical condition. In the 1970's, it was put down to 'mass hysteria', a copycat effect for people looking for an answer as to why they were always tired, but in reality, they may have just not been looking after themselves properly at the time. Over time, it has gained itself some unfair negativity. In the 1980's it was named the 'yuppie flu', indicating it was an excuse for spoilt, young people unwilling to work. Today, as it is known as a genuine medical illness, there are a few ways in which a doctor may suggest to manage it. There is currently no test for CFS, but there are strict and clear guidelines in which doctors can consult when trying to identify and diagnose the symptoms. It can be difficult to officially diagnose, as doctors may want to rule out other conditions first. Many of the symptoms also overlap with other medically recognised problems, which they may be able to rule out with a viable test. If you feel you are suffering from CFS, your doctor should give you tips to manage your symptoms first off, but they will also be looking for the following when considering a diagnosis.
  • Does it have a clear starting point?
  • Has it been persistent or reoccurring, or both?
  • Is it unexplained by other conditions?
  • Has it substantially reduced the amount of activity you can take part in?
  • Do you feel worse after physical activity?
They will also look for one or more symptoms that have been occurring for at least four months in an adult or 3 months in a child or young person, and not explained by any other condition:
  • Difficulty sleeping or insomnia
  • Muscle or joint pain without inflammation
  • Headaches
  • Sore throat
  • Poor mental function, such as difficulty thinking
  • Feeling unwell with flu-like symptoms
  • Nausea and dizziness
  • Heart palpitations, without a cardiovascular disease.
Doctors will be able to link the list of symptoms above with many other conditions - this is why there is an on-going discussion amongst professionals about how to diagnose and treat CFS. banner_18Nov16_4 Unfortunately, there is a very low rate of people who find themselves completely cured of CFS. One form of management which has been utilised is known as 'graded exercise therapy', which is intended to work as an extra gentle exercise programme of interval training. Similar to those used by athletes when they are sprint training, but at a much slower pace! A professional guide would set you some gentle exercises and gradually increase them over a particular length of time. The activities could start with sitting up in bed for a minute every day. When you are so physically exhausted and bed bound for periods of time, sitting up for a minute can feel much longer to a sufferer, but it is an achievement none the less! You then build on the activities, such as sitting up for three minutes, then getting out of bed and standing up, walking down the stairs before laying down again, and so on until you start regaining control over your movements. This method aims to retrain the brain that each successful activity is safe and that fatigue does not have to rule your life. This particular strategy has seen both successes in patients, and criticism from supporting charities who believe it can be dangerous to encourage such activity. Another method of support is CBT, cognitive behavioural therapy which is a form of talking therapy that equips the patient with the skills they need to manage their problems. It is very commonly used to treat anxiety and depression but can be used for other mental health issues as well. Talking therapy challenges the beliefs and negative thoughts a patient has with their illness. When the patient has a genuine fear that any extra exertion to them will cause their body to crash and be in pain, CBT teaches them that they can control this feeling and turn it around. The method causes debate amongst researchers and doctors regarding that CFS is not a mental or physiological issue, but a physical one. However, despite this, there have again been successful results in groups of people undertaking talking therapy. banner_18Nov16_7 We've spoken with a long-term sufferer of Chronic Fatigue Syndrome to see how they have dealt with their symptoms. How old were you when you were diagnosed and how straight forward was the diagnosis? "I was diagnosed at the age of 10 or 11. It took years of my mum fighting my corner saying something wasn't right. They ruled out different issues, glandular, thyroid, depression and many other different things. I had to go through several councillors as they were so sure I just hated school or that my home life wasn't okay... all those sorts of things, which weren't true at all." What kind of support were you offered when diagnosed? "I eventually got diagnosed but didn't get much help afterwards, once again something that my mum had to fight for. They put me in a program at Kings College Hospital in London to help me manage my symptoms. The program was focused on cognitive behavioural therapy." Do you still suffer from symptoms if so, how do you manage them? "I'm now 27 and still suffer occasionally, but I find exercise helps me, and my diet. Nowadays it gets worse with horrific stress (i.e., when someone passes away). But I'm used to it, so I just get on with it. Which is probably not the best way of dealing with it but it works for me." Do you think more needs to be done to support those with CFS? "Yes, I hate telling people about it as they always look at me weirdly, or think I'm faking it. Doctors never take it seriously; never write it down when I explain (when admitted to A&E for example). Many people research it and go I feel tired I must have CFS, which used to drive me mad as it's an entirely different feeling to just being tired. The best way to describe it is like a thick fog in your head which you just can't get rid of by having a good night’s sleep, especially if the muscles in your legs decide to play up and you just cannot get comfortable no matter how hard you try. I think that's why I like to exercise so much (and it helps control the symptoms) that I have a good reason for my legs to ache. It has got a huge stigma to being the "lazy" disease. I don't tell anyone because I'm never sure how people will react, they will see me differently, or just think I'm a drama queen." There have been cases which show people can improve with treatment over time. This has, however, been more successful with young people or children. It's unclear whether anyone can be 100% free from this condition, as those with manageable symptoms may find themselves relapsing, or suffering again at a later age. Let's hope with continued research, doctors and researchers will come to a conclusion, and this illness will only ever be taken seriously to support those who live with chronic fatigue syndrome.


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