From BT.com Lifestyle, 12 May 2016. Words by Susan Griffin.
People have long approached sufferers of myalgic encephalopathy (ME) with suspicion.
Those living with ME – also known as chronic fatigue syndrome (CFS) – have been accused of being idle and lazy and lacking the get-up-and-go to ‘just get on with the day’.
It’s no wonder then that many of the 250,000 CFS sufferers in the UK – children as well as adults – feel stigmatised by society’s attitudes towards them and poorly treated by their doctors.
What is ME?
“ME or CFS is a long-term debilitating medical condition usually presenting with severe and overwhelming fatigue after mental or physical activity,” explains Dr Eliana Lacerda, Research Coordinator for ME/CFS at the London School of Hygiene and Tropical Medicine.
“It’s accompanied by a range of disabling symptoms such as cognitive impairment, sleep problems, pain, and autonomic dysfunction, which follow abnormalities in the nervous and immunological systems.”
Is it not just tiredness then?
“Chronic fatigue syndrome is the equivalent of saying that someone with dementia has a chronic forgetfulness syndrome,” argues Tony Britton, spokesperson for the ME Association. It’s why he believes the name should be placed in the “medical dustbin” as soon as possible.
Time for a name change?
Over in America, the Institute of Medicine recently proposed that CFS should be changed to Systemic Exercise Intolerance Disease. The panel argued it would at least capture the main characteristic of the illness and elevate the condition to that of disease.
But it doesn’t exactly rattle off the tongue, and as Dr Lacerda points out, “It still maintains the focus on the fatigue, which doesn’t help to overcome the stigma and prejudices.”
What are the symptoms?
There are a huge number of symptoms of the condition, of which chronic fatigue is only one.
“The symptoms can fluctuate widely from day-to-day, even hour to hour, often preventing sufferers from being able to plan their time,” says Britton.
The hallmark symptom is delayed recovery after even modest amounts of physical or mental activity.
“It can be a day or two before the feeling of exhaustion kicks in. This abnormal draining of energy can last for hours or days afterwards.”
How is someone diagnosed with ME?
Unfortunately, diagnosis can be lengthy and difficult.
“[CFS] is frequently mistaken as a mental condition which is prolonged because sufferers imagine they won’t get better. It is also generally ignored in medical training so many doctors don’t know how to diagnose and treat it,” notes Britton.
It also relies heavily on testing for other illnesses with similar sets of symptoms in order to exclude them from the diagnosis.
“There’s a remarkable amount of misdiagnosis, which is often picked up only when patients are able to get into specialist NHS clinics,” he adds.
Is there a cure?
As it stands, there is no cure for CFS. Treatment in the UK is heavily dependent on Cognitive Behaviour Therapy and on Graded Exercise Therapy, the two frontline treatments recommended by the National Institute for Health and Clinical Excellence (NICE).
But, Britton adds, “the ME Association believes the NICE Guideline on ME/CFS offers too little in the way of treatment choices to healthcare professionals, and indeed many patients tell us that Graded Exercise makes them feel worse rather than better.”
If you suspect you’re suffering from ME, ask your GP for help and have a look at the ME Association website.