Locals join #MillionsMissing protest for ME research cash

May 29 2018

Bristol joined over 100 cities around the world on May 12 calling on governments and health officials to end the inequality of funding and research into Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

ME sufferers, often hidden from view because of the nature of their illness, their families and friends gathered in Queen Square as part of #MillionsMissing, a global day of protest spearheaded by international health network ME Action to highlight the plight of sufferers and the urgent need for funding research into the neurological disease. 

People from across Bristol and the surrounding areas contributed pairs of shoes labelled with a short message about their experience of living with ME. These shoes - unused due to the debilitating symptoms of ME - were laid out in Queen Square as a poignant representation of those “missing” from their everyday lives. 

“Everybody that came with me was deeply affected by it. It was so moving, especially when people read out the stories of sufferers and looked at the pictures of shoes,” said Sarah, from Bishopston, a member of the Bristol Support Group. 

Karen, from Horfield, developed ME after a bout of flu: “There was something very special about people all coming together and being heard and seen and believed. So many of us spend so much time at home or on our own and to have that connection was worth it.

 “It’s a very invisible condition where you can be housebound or bed bound for years. We know from the facebook support groups that there were many people who couldn’t be there on the day watched it online.”

 Sarah first approached her doctor with fatigue and over a period of 18 months her health declined to the point where she had to stop work as she explained: “The fatigue is one symptom but then you’ve got the brain fog, forgetting words and to do basic things like turn off the hob.

 “Some people have immunity and hormone problems plus sensory overload issues - I’ve left rooms because the TV is on and it’s too bright. Everyone is slightly different but there is a core group of symptoms that we all experience.”

 Karen added: “Unless you’ve had ME you don’t understand that level of exhaustion. A lot of our members have to use a commode as they can’t make it to the bathroom. The severely affected will have to lie in a darkened room with headphones on to block out any noise, wearing a mask to block out any light.”

 ME/CFS is a devastating, complex, multi-system disease, which affects the immune system, nervous system, endocrine system and metabolism. Those affected experience an extreme form of fatigue and a severe worsening of symptoms after even minimal physical or mental exertion. Behavioural and exercise therapies approved by NICE are offered as treatments to manage symptoms but with varying degrees of success and are currently under review. Despite the illness affecting an estimated 250,000 men, women and children in the UK, little money is going into medical research to target the causes of the disease. 

From 2006-2015, just £4 per patient per year was spent on research funding for ME, only a small percentage of which had a biomedical focus. By comparison, £80 per patient per year was spent on MS research. 

 Many people know someone with ME but find that they’ve lost contact with them as their friend drops out of friendship circles while struggling to cope with debilitating symptoms. Suffers learn to pace themselves and understand that if they go beyond their limits there will be a payback. And, there will be other triggers that make things worse. Computer use due to the bright light can trigger a relapse and emotional or physical bursts of energy make someone with ME feel exhausted. Acupuncture, yoga and osteopathy help to manage symptoms but all have to be paid for privately.

 Support is much in need and offered by the Bristol ME Support Group www.bristolmesupportgroup.wordpress.com which runs meet-ups across the city (at the Wellington Pub for Bishopston) on a regular basis and provides newsletters. An award-winning documentary is available on Netflix, Unrest by Jennifer Brea, co-founder of the ME Action Network about her own experiences with ME.

Karen said: “I avoided the support groups for a number of years but they are vital for a condition that is so much misunderstood. You can chat online or meet up with other people with ME.”