The doctor we contacted to help with our research said it all: ‘The ailment of attention seekers! Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, call it by whatever name you want, ME is an illness which doesn’t exist. I don’t believe it is a physical disease – it’s all a state of mind.’ Harsh words indeed, but one that mirrors the public opinion surrounding Myalgic Encephalomyelitis. The diagnosis being: those complaining are simply suffering from a chronic bout of laziness. How can tiredness, ask the cynics, be a medical condition? But there are 240,000 patients nationwide who would beg to differ.
Let’s compare lives. From the moment we wake, there are a hundred things we get done over the course of a day. Brushing our teeth, watching TV, walking to the station – things so trivial they hardly register in our Things To Do list. The ME patient, on the other hand, is happy to be able to just get out of bed! It’s not that victims of the disease enjoy a long sleep all the time – they are constantly drained of energy, with muscle spasms and severe fatigue accompanying them wherever they go. ME mainly affects the muscles and head, often starting after an ordinary viral infection. Feeling ‘ill all over’ isn’t even the half of it, short-term memory loss and constant headaches plague sufferers, and they often describe it as if their ‘plug has been pulled out.’
ME sufferer Joginder Banga (pictured) is living proof that ME can strike at any time, regardless of age or ethnicity. As a senior radiographer at West Bromwich Hospital, she was the picture of health with a loving family and hectic social circle surrounding her. Every day was filled with a million things to do – going to work, meeting up with friends, taking care of the home – no one could ever accuse her of being anything less than full of life. Then suddenly everything collapsed.
‘It took nine months for the doctors to conclude I had ME – they simply refused to believe it was a physical illness. I know people think it must be such a laugh to not have to do anything – but when you’re someone who wants to do things but can’t, it’s a living hell. When I was first struck by ME, I couldn’t stay awake for longer than four hours a day. I was so weak I couldn’t even open the blinds. Can you imagine not even being able to do something as simple as that? I was always the first one at a party to get up and dance – suddenly I felt as though I’d aged thirty years in one fell swoop.’
The natural reaction is to fight it, refuse to let it destroy your life. For sufferers, the temptation to push themselves beyond the tiredness barrier is strong, only to pay a heavy price when it all comes crashing down.
‘ME is all about routine,’ explains Joginder, ‘You only have the energy to do one thing a day – so you have to choose carefully, whether it’s a bath, or reading a book. Even watching television can tire you out. I wish I could convey the sheer exhaustion that sets in even after making a cup of tea. And it’s so depressing not being able to make food for my children when they come home from school.’
As far as her mindset goes, things are slightly easier for Joginder now that she can put a name to her condition and seek appropriate help. At least she isn’t, as she feared in her darkest hours, at death’s door. Even so, getting help isn’t proving to be easy. Not when so many medical professionals like our good doctor readily suggest the condition is pure fiction.
The National ME Centre has heard it all before. A spokesman told us: ‘The idea that people with this illness somehow “want to be ill” or that they are malingering is absolute nonsense. Most of them had an active enjoyable lifestyle before becoming ill and would like nothing more than to return to it.’
Perhaps the reason so many doctors refuse to acknowledge it may be because there aren’t any clear tests to diagnose ME and it depends greatly on the doctor’s clinical judgement. A lot of the symptoms make it hard to define – especially since some overlap with mental illnesses – but most patients don’t often realise they have ME until pointed out by a professional. Joginder’s case strikes a chilling chord because her downward spiral into ME started from an extremely common viral illness that sparked off an unstoppable chain reaction.
‘Like most people I didn’t know what ME was. I loved my job, but I worked really long shifts and wore myself out. In 2001, I had flu and a couple of months later got food poisoning. After that, I felt really run down but managed to carry on working for about nine months. I went to see my GP for the first time in 15 years – he was supportive, but couldn’t explain why I felt like a rag doll. In the end I collapsed and was taken to hospital, where doctors ran some tests on me and found I was anaemic. I later discovered anaemia is part of ME, because the red blood cells aren’t able to carry oxygen. But apart from that, all the tests came out as normal. After going back to work, I quickly realised I couldn’t take it any more and had to leave. I loved my job. It broke my heart having to quit.’
Luckily for Joginder, her family understood, a luxury rarely offered to ME sufferers, especially in the Asian community. Says a grateful Joginder: ‘A lot of people still believe I’m putting it on, but I have a wonderful husband and supportive family who give me the strength my body disallows me. My nieces even put on an annual charity fashion show to raise awareness. I think slowly people are beginning to understand about this terrible disease.’
It’s crucial for ME sufferers not to allow the prejudices and loss of an active life to get the better of them. Almost 50 per cent of ME patients feel suicidal when they realise the full impact of the disease and the effect it can have.
Only time can decide how long ME affects the body. It can afflict a person for anything between six months to decades. Most severely affected sufferers are completely bedridden or wheelchair-bound, in a constant haze of pain, unable to perform any bodily functions. Those mildly affected can work full time but have to rest every evening and weekend to store up their energy.
But there is light at the end of the tunnel. Researchers are pushing forward everyday, making links between viral infections that may attack the nervous system and are striving to find a cure.