Cambridge group celebrates progress for ME Awareness Day
Cambridge ME Support Group (CBME) is celebrating the progress that has been made in the treatment of ME – myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — since the guidelines for treatment were changed.
“ME Awareness Day on May 12 is a good time to pause and take stock of what has happened for people living with this awful, life-changing illness,” says CBME chair Mark Harper.
Treatment pathways are overseen by NICE, the National Institute for Health and Care Excellence, an executive non-departmental public body of the Department of Health and Social Care in England.
In 2021 NICE’s guidelines on diagnosis and treatment of 250,000 people in England – of whom there are 2.4 times more women than men – suffering from ME were updated (after a few hiccups). The symptoms of ME – debilitating fatigue worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’) – were accepted. Specialist teams identified holistic management plans in line with the guidance.
“For decades the condition was written off as hysterical illness by the medical establishment,” says Mark. Now, after a long period of frustration, there is some momentum.
“A very large study, DecodeME, is under way, aimed at analysing the genes underlying the illness,” Mark adds. “Much more in understood about how ME disrupts normal metabolism and reduces sufferers to chronic, life-destroying exhaustion and illness. We are gradually coming to understand the role of inflammation, both in the body and in the brain. And it seems that certain viruses, able to hide from the immune system, can kick the illness off and then reactivate from time to time, potentially keeping the illness going.”
Blood tests for ME are also under development. Prof Ron Davis, at Stanford University in the US, can discriminate the blood cells of people with ME by measuring their reduced ability to cope with a salt challenge. Karl Mortens, at Oxford, uses laser light (Raman spectroscopy) to discriminate blood cells of ME sufferers from those with MS and from healthy subjects.
Once these tests become available to GPs, diagnosis will become straightforward and treatment of sufferers will improve as research funds are made available.
But there is more to be done following the pandemic, Mark notes.
“It seems the Covid virus is especially good at inducing ME– there may be as many as 380,000 more people living with ME in the UK for at least two years.”
A spokesperson for Cambridgeshire and Peterborough Integrated Care System said: “Providing good quality, patient focused care to local people is our priority at all times. The services and support provided for ME/CFS patients are reviewed on a regular basis: this includes consideration of the latest NICE guidance.
“Locally, our focus is to provide support and advice tailored for individual patient’s needs. Whether that is through self-management support, or through clinical and therapy appointments which are offered at home, virtually or face-to-face at a number of specialist clinics across Cambridgeshire and Peterborough.”
ME Awareness Week was established by patient advocates and is focused on May 12, the birthday of Florence Nightingale, who was believed to have suffered with ME. From 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been chronic fatigue syndrome.
Find out more from Action For ME.