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Sufferers of ME/CFS are taking to Queen Square this weekend. The Cable spoke to an organiser about why the government needs to take action on the disease.

Photo: francescoch

People are taking to the streets to demand recognition and funding to treat Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome (CFS). Sufferers are taking action this Saturday across towns and cities internationally, including in Bristol.

Globally, #MillionsMissing aims not just to highlight the plight of sufferers, but to pressure governments to put funding into the widely misunderstood disease, categorised by the World Health Organisation as neurological, but which many clinicians still miscategorise as at least partly psychiatric.

A co-organiser of the Bristol event, Phil Murray, counts himself lucky to have now completely recovered from ME/CFS, which he suffered from for seven years, 20 years ago.

“I fell into a deteriorating spiral of exhaustion, which was unlike anything I had ever experienced”

“I was 33 years old and I had a full life with lots of work, sport and social life,” he explains. “I got one severe virus. I was ill for a week and then got a secondary infection, and when that didn’t clear up I fell into a deteriorating spiral of exhaustion, which was unlike anything I had ever experienced.

“Within six weeks, I was completely bed-ridden and totally disabled by what was then called post-viral fatigue syndrome.”

Sufferers of severe ME/CFS can die, in severe pain, which is what happened recently to 21-year-old ME/CFS sufferer, Merryn Crofts, who passed away last year. Many more are left ‘missing’ from their lives, unable to take part in everyday activities. In the UK, an estimated 250,000 people suffer from some form of ME/CFS, and a quarter of those are so severely affected that they are bed-bound.

“I’m appalled that 20 years after I got this illness the scientific community in research has not moved on much at all,” says Murray. “Vast amounts of money has gone into inappropriate research in my opinion, such as behavioural and exercise therapies.”

Murray’s view is shared by many who have had experience of the disease. Currently the NICE guidelines for the treatment of ME/CFS include cognitive behavioural therapy – a talking therapy – and ‘graded exercise’, whereby a patient is tasked with completing increasing amounts of activity. These are the treatments prescribed by the Bath Fatigue Clinic, the largest pediatric and adult ME/CFS service in the country. There are no drug therapies that target the causes of the disease.

“I’m appalled that 20 years after I got this illness the scientific community in research has not moved on much at all”

While CBT and graded exercise may have some benefits for managing (but not treating) the disease for patients with milder forms, the inclusion of graded exercise is harshly criticised by many patients and ME/CFS advocacy organisations as harmful. This is because a key feature of the disease is that exertion makes symptoms worse, not better. There are plenty of stories of patients who have had catastophic declines in their conditions after graded exercise therapy.

Over the last year, there have been developments that may spell the beginning of a sea change. The plight of ME/CFS sufferers was raised in parliament by Carol Monaghan, MP for Glasgow North West – the first time that the disease had been mentioned officially in UK government.

A reanalysis of the £5 million government-funded trial known as PACE, which found CBT and graded exercise effective, has discredited the results published in 2011 that found the methods effective, giving new life to the movement to have them removed from NICE guidelines.

Participants in the #MillionsMissing demonstration in Bristol and around the world this weekend hope that momentum will continue.

For more information about #MillionsMissing Bristol, see the Facebook page.

For more information on severe ME/CFS, watch the film Voices from the Shadows.

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