ME Association Press Release, 15 March, 2018.
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 M.E. (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 M.E. sufferers report having to give up employment and tell of a struggle to obtain benefits.
Now a study shows that people with M.E. 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 M.E. 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 M.E. 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 £3bn 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.”
ME Biobank coordinator and paper lead author, Caroline Kingdon said:
“It is impossible to visit people severely affected by ME/CFS in their homes or to meet those more moderately affected, as I have had the privilege of doing, without recognising the injustice inherent in a system that often fails to recognise the existence of the disease or the disability it causes.
“I hope that this paper will help to validate the experiences of people with ME/CFS. Few other diseases are so stigmatised.”
While some people with M.E. 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.
For more information on M.E., visit the ME Association website. For press enquiries, contact 07598032845.
The UK ME/CFS Biobank was launched in 2011, and it is led and managed by the CureME research team at the London School of Hygiene & Tropical Medicine.
The physical Biobank is located at the Royal Free Hospital – where it forms part of the University College London Biobank.
From the very beginning, the ME Association Ramsay Research Fund has provided significant finance for this charity-backed project, and because we see real value in this initiative, we will continue to support it as a major investor.
This is the only such project in the UK aimed at the study of ME/CFS and the supply of samples to outside researchers. It has successfully obtained more than 30,000 aliquot samples from people with very carefully defined ME/CFS.
Some of the participants with ME/CFS are being followed up for another 3 years with funding from a grant from the US National Institutes of Health.
The full research study can be read here.