A misunderstood disease wrongly labelled make-believe by some GPs is more devastating to sufferers than multiple sclerosis, a new scientific study has found.
More than 250,000 people in the UK have ME (myalgic encephalomyelitis), which manifests as unrelenting fatigue and profound pain. The condition, also known as Chronic Fatigue Syndrome, has no known cure and is made worse by exertion.
Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, days, weeks or longer.
But, despite the illness being recognised as a neurological condition by the World Health Organisation, patients are often branded hysterical, hypochondriac or even lazy. Many ME sufferers report having to give up employment and tell of a struggle to obtain benefits.
Now a study shows that people with ME can be more disabled than those who suffer from multiple sclerosis, a similar but recognised illness that affects more than 100,000 in the UK.
The paper, Functional Status and Well-Being in People with Myalgic Encephalomyelitis, was published in Pharmacoeconomics – Open.
The study used anonymised clinical data that was collected from people with ME and MS who have donated blood samples to the UK ME/CFS Biobank in London, and also assessed how their illnesses affect areas such as employment and income.
Scientists found that the people with ME were ‘measurably more disabled’ than those with MS, work fewer hours and have lower incomes.
The report states, “People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.”
Researchers said that their findings should encourage the health community to:
- Recognise the disabling effects of ME/CFS;
- Advocate for the needs of people with ME/CFS;
- And to investigate strategies to address the cost of the disease to both individuals and society. It has been previously estimated that the cost of ME/CFS to the UK economy is more than £3 billion per year.
The report concludes, “More people with ME than people with MS lost their jobs after becoming ill, and the income of people with ME decreased markedly more than for people with MS.
“Unemployment costs are borne by both the individual and society. The prevalence of ME/CFS […] and the economic cost of the illness to society should be powerful motivators for policy makers to encourage better funding of research to discover the cause of, and establish effective treatments for, this disease.”
While some people with ME do improve over the course of time, it is only a small minority that return to full health. And the disease is indiscriminate, affecting both sexes, all ages and all races.
Dr Charles Shepherd, Hon. Medical Advisor to the ME Association, said, “For people with ME/CFS, this is a very important piece of research involving clinical data collected by the ME Biobank.
“It not only validates the very severe level of disability that ME/CFS can cause. The findings can also be used to help support claims for sickness and disability benefits, which are often refused, as well as providing firm evidence of disability for those who require modifications to help them to continue in employment or education.”
The Biobank, which contains extensive and anonymised clinical data on people with ME, MS, and healthy control, is funded by donations to the ME Association’s Ramsey Research Fund. Participants have donated blood samples and answered questions about themselves for research purposes.
* Read the paper Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls here
* ME Association http://www.meassociation.org.uk/
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