Living With M.E: A Case Study
Jackie provides a forthright and passionate account of the problems she has encountered living with myalgic encephalomyelitis (ME).
“I have been living with ME for 7 years now and the worst problem I face is medical disbelief. The way that people with ME symptoms are treated in this country, and elsewhere in the world for that matter, is outrageous. Doctors act as though I have a psychiatric problem, that I am a head-case, that I am faking illness so I don’t have to work and can stay in bed all day. A doctor who did that to someone with a broken arm would be struck off.”
Jackie’s ME started when she was 18 and in her final year of A levels. She had been a good student and was expected to get straight A grades and had a place at university to study veterinary medicine. While away on 5-day fitness training holiday when she began to ache all over, had a sore throat and a fever and felt generally terrible.
Determined not to waste the money she had paid out for the holiday, she carried on with the training, encouraged by her friends and the people in charge. At the end of the ‘holiday’, she returned home, a complete wreck.
“I was totally exhausted and every muscle in my body felt like it was on fire. I had a cough, a high temperature and diarrhoea and spent the next week in bed. I thought I would start to feel better but I never did. The trip to see the GP was an ordeal, I could barely walk. He said I had exhaustion and an upper respiratory tract viral infection. He told me to take paracetamol and drink plenty of fluids and to rest. In hindsight, this was the last piece of good medical advice I ever received. I now know that if you exercise strenuously when starting with ME, you can permanently damage your body.”
Pull Yourself Together!“After 8 weeks, I still couldn’t get out of bed and a different doctor from the practice came to see me. He told my mother that I was obviously just faking illness to get out of my exams. She tried to tell him that I was upset and depressed that I couldn’t get to school and I couldn’t study and was desperate to do my exams, but he had no intention of changing his mind.
Months of different doctors followed. One thought I had post-traumatic stress disorder (the most stressful event in my life so far was when I failed my driving test…), another agreed that I was faking, another thought I had anxiety and depression. I was depressed but this was the effect of my illness, not its cause. All agreed that I should pull myself together, get up and get moving…”
ME Is diagnosedJackie tried walking but collapsed one day at the end of the street and was taken to hospital. One of the emergency room doctors had been reading about myalgic encephalitis (ME) on his break and made an important connection. Jackie was referred to a neurologist and was finally diagnosed as having ME.
“I thought that this was progress and that I could now start some treatment and start getting back to my life and take my A levels. Wrong, wrong, wrong. I was signed up to a series of therapy sessions called cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
At the first CBT session, the counsellor took my life history for one and a half-hours (I had to lie on the floor because I was so tired and aching) and then asked me a series of questions. The last one was “If a neighbour’s cat was sick on the path outside your house, how would you clear it up? With the last of my energy, I struggled to my feet and left. That was my one and only CBT session. I had already tried GET – that’s how I ended up in hospital in the first place.”
Treated Badly“I am appalled that I am not getting any proper medical treatment for a physical illness. I am still virtually bedridden at the age of 25 and I am ignored by modern medicine. Do you know how much the government is spending on ME research this year? NOTHING – there is no budget for ME research in the UK. For a condition that affects a quarter of a million people, why is that?
There is good evidence that ME is caused by neurological damage following a viral infection. Inflammatory drugs can help, targeted treatment for the physical symptoms can help – so why can’t people with ME be treated fairly and given the drugs and help they need?”