‘At last: recognition for ME’ | Choice magazine | November 2013

The £1.6m award to researchers investigating the causes of ME means this distressing illness is finally coming in from the cold, says Judy Hobson.

News that the Medical Research Council is starting to take the debilitating condition Myalgic Encephalopathy (ME) seriously will hearten the countless thousands of sufferers in the UK who often face months or even years of waiting for a diagnosis, sometimes being dismissed by their GPs as malingerers.

Meanwhile, their lives are disrupted by physical and mental fatigue, muscle and joint pain and disturbed sleep patterns. They often have to cope with concentration and memory problems.

The combination and severity of symptoms vary from one patient to another, adding to the illness's complexity and making it difficult to diagnose and treat.

It is hoped the research supported by the MRC will identify the biological fingerprints of the illness and this will ultimately lead to a diagnostic test and pave the way for more effective treatments. Although this research will take a few years, the very fact it is taking place should help get rid of the cynicism about the condition that still lingers in the minds of some of the medical profession.

Dr Charles Shepherd, medical adviser to the ME Association, who has the condition himself, says: “This is a major shift by the MRC and, while it won't produce a miracle cure overnight, it is going to help us piece together the medical jigsaw that forms ME.”

These days, ME is often referred to as ME/CFS (Chronic Fatigue Syndrome) reflecting the uncertainty that surrounds the condition, estimated to affect 250,000 people in the UK.

“This title,” Dr Shepherd says, “is a compromise because debate about the causes is ongoing. With ME/CFS, you're dealing with a three-stage illness. First, you have predisposition. We know there's a genetic factor involved because you find clusters in families.

“Secondly, there is a precipitating factor. Around 75 per cent of people are fit and well until they are struck by a viral infection such as chickenpox, glandular fever, meningitis, hepatitis or a bad dose of flu.

“Thirdly, there are perpetuating factors involving brain, muscle, hormone-producing and immune systems. There's evidence to show that after the viral infection, the immune system goes into overdrive and instead of settling back to normal continues producing inflammatory chemicals called cytokines that make people feel they have flu-like symptoms.” As to current treatment, he says, it is a fine balancing act between rest and relaxation and careful increases in activity.

“We don't want people to stay in bed but at the same time we don't want them to do too much. We recommend pacing – starting at a low level with a little mental activity then resting, doing some physical activity and then resting again.

“Forcing your way out of this condition is wrong. Sadly people don't realise this can make matters worse. They can be left for weeks and months with no diagnosis, advice or management strategy and, without a proper diagnosis, it can be difficult for them to get sick notes. Getting their doctor to believe there is something wrong with them, plus the worry about financial problems, only adds to their stress.”

Seventy-five per cent of sufferers have pain which can be in their muscles, nerves or joints. For some this is the most disabling part of their illness. Yet for 25 per cent pain is not a significant feature.

Dr Shepherd says: “We want to discover why pain occurs in people when there has been no trauma or injury.”

He adds that there are drugs which can help with sleep problems and pain. For moderate pain it could be worth trying a low dose of a tricyclic such as amitriptylene, a drug normally prescribed for depression. For moderate to severe pain, one option is to try a low dose of gabapentin, an epilepsy drug that dampens down the pain sensations in the brain.

“The problem is that these are not necessarily on the GP's radar and so some patients do not always get the best advice. In many parts of the country it's also impossible to find a hospital where there's a specialist to whom GPs can refer ME patients. This is scandalous and we're working with the all-party group on ME to get this raised in the House of Commons.

“ME is a major illness and around five to ten per cent of people are so badly affected they are left bed-bound and completely dependent on others. Some can lose their voices or have to be tube-fed.”

He recalls hearing about an outbreak at the Royal Free Hospital in 1955 that affected around 300 staff and led to the hospital being closed. A Lancet editorial described it as ME. Dr Shepherd says: “When I was doing psychiatry at the Middlesex Hospital in London, I was told the Royal Free phenomenon was mass hysteria. I believe this is why there is still cynicism about it.”

It was while working as a junior doctor in Cirencester in the early Eighties that Dr Shepherd caught chickenpox off a patient with shingles.

He says: “Until then I'd been a fit young adult. I had ten days off sick. Then despite feeling grotty I went back to work, which was a a major factor in my deterioration. My balance was affected and my brain didn't function as it should.” Two years later he was diagnosed with ME and realised that he was not fit enough to continue working in the NHS. For the past 20 years, he has worked for the ME Association and campaigned to raise awareness of the condition.

He says: “I would urge those who are frustrated when their doctors say there is nothing they can do to call our seven-day helpline or visit our website to get help.”

JULIA GLENN: A 30-year battle against ME

Instead of dwelling on what might been if she had not developed ME/CFS and had to retire on health grounds at 46, Julia Glenn counts her blessings. Now 53, she wages a daily battle against muscle pain, fatigue, vertigo and respiratory problems. She says: “You have to find a way to accept how things are because anger only poisons your body and makes your symptoms worse.”

Julie also feels privileged to live in a lovely house with views over Lyme Regis Bay in Dorset and to have a pension from Network Rail. However, she does sometimes wonder what her life would have been like if she had not spent the past 30 years waking up with flu-like symptoms.

Growing up in Grantham, Lincolnshire, Julia developed a love of horse riding. On leaving school she trained as a riding instructor but, after a year working at a riding school in Essex, London's West End beckoned. At 22 she became a subsidiary sales manager at the Prince Edward Theatre and bought a flat in Wood Green.

A month into that job she contracted glandular fever and only took two weeks off. She suspects this was the trigger for her ME. “I really pushed myself to go back to work even though I was still feeling unwell. I struggled to do anything outside of the theatre and started to realise my peers were having a much more vibrant quality of life.”

By 30, she was working for a tour operator and on a constant diet of paracetamol. “No matter how much I shut myself away and rested in the evenings and at weekend, dragging myself to work became increasingly difficult.” However, she did not give up and went on to join Network Rail. There, instead of dining with colleagues at lunchtime, she ate alone because using a knife and fork hurt her arms and hands so much.

“Looking back I really wish someone had told me to stop pushing myself. I'd tell my doctors I was really struggling but, instead of offering support or diagnosing what was wrong, they'd ask ‘Where's your fight gone?'.

“By 2005 I was grinding to a halt with multiple allergies, increasing fatigue and digestive problems. That November I got a respiratory infection and didn't recover until the January. After five weeks of trying to get repeated medical certificates, and being told by one doctor that the certificate was only for three days because I was fine and should just drink lots of fluids, I managed to move to another practice. There I saw a female doctor, who suspected I had ME and wanted me to see a consultant.”

The diagnosis was confirmed by Dr William Weir, a Harley Street doctor with a special interest in ME/CFS. He advised her to take time off work or at the very least cut her hours. Julia reduced her hours but did not improve so she took eight weeks off.

In August 2006, she went back for half a day and realised that for the sake of her health she had to retire. “I continually feel as If I'm fighting off a bad dose of flu. On the days I feel slightly better, I think Ill wash the windows but, by the time I've done one, my arm is shaking and so painful the others don't get done.”

Dr Weir recommend Julia take high dose Omega 3 fish oils. She also takes amitriptylene for her pain.

Despite the medication and the fact she paces activities, there has been no change in her symptoms.

FIND OUT MORE

Dr Charles Shepherd has written a 52-page booklet with consultant neurologist Dr Abhijit Chaudhuri about the latest research into the illness. To order, tel 01280 818968, website: www.meassociation.org.uk For the ME Connect helpline, tel: 0844 576 5326.