Carol Monaghan: We must change perceptions of the debilitating illness ME

Posted On: 
18th June 2018

MPs have an opportunity to bring about real change in the lives of those living with ME, writes Carol Monoghan

Empty pairs of shoes, representing a patient of ME, were on display at a “Millions Missing” rally in May
Credit: 
PA Images

With an estimated 250,000 people in the UK affected, Myalgic Encephalomyelitis (ME) is poorly understood by the public and by many healthcare professionals. Scant press coverage and a desire for quick catchy headlines has meant that perceptions of ME as “Yuppie Flu” or laziness are common, but surprisingly little is actually known about this condition. 

Many sufferers report that their ME was first triggered by a viral infection such as flu or glandular fever and have been battling with this debilitating condition ever since. Indeed, ME presents in much the same way as a flu with extreme headaches, muscular pain, poor appetite, sensitivity to light and broken sleep common. With ME however, these symptoms do not abate and can remain for many years. Elderly family members are often the main carers and the effect on relationships is significant. But despite this, there is little recognition of the impact of the condition. 

A major concern for ME groups is the lack of biomedical research into the causes and mechanisms of the illness, and the absence of effective treatment programmes. To date, the most significant study into ME is the controversial PACE Trial, which considered ME from a psychological perspective, rather than a pathological one. Its findings, that ME could be improved with simple lifestyle changes, a positive mental attitude and some gentle exercise known as “Graded Exercise Therapy”, have formed the basis of current treatment. However, this trial, now regarded by many scientists as flawed and unreliable, has provoked a backlash from patient groups who report that even mild exercise can worsen symptoms and set back recovery by months or, in some cases, years. 

To develop effective treatments, we need a more realistic approach to biomedical research. A recent study by researchers at Columbia University found that there were specific patterns in immune biomarkers in people with ME, and some patients have reported improvements in their condition as a result of courses of antiviral drugs. But how can we genuinely consider that we are able to provide treatments for a condition that as yet we do not understand?

Since the start of the year, I have been pressing the government for significantly increased funding for biomedical investigation. Recent parliamentary questions reveal that the average research spend per person living with ME is around £1 per year, much of which is funded, not by government, but by ME charities. Compared to the economic cost of lost days at work, unemployment, and disability benefits, this is simply unacceptable. However, because of the nature of the condition, those with ME are often unable to campaign. One group’s name, “Millions Missing”, is an accurate description of the uphill battle faced when attempting to bring about change from a sick bed. 

Since I began this work, I have been overwhelmed by the cross-party support I have received from fellow members. Their involvement sends a positive message to people who suffer from this long-term debilitating illness, and offers MPs an opportunity to bring about real change in the lives of those living with ME.

 

Carol Monaghan is SNP MP for Glasgow North. Her Westminster Hall debate takes place on Thursday 21 June