Hundreds of people gathered in Sheffield Fargate today as part of the global Millions Missing campaign, to raise visibility for people around the world living with ME.
Organised by the Sheffield ME and Fibromyalgia charity, the demonstration was part of a global initiative advocating for ME health equality. On Fargate, as around the world, shoes were sent by sufferers too ill to leave their homes, featuring heart-breaking messages about the lives that have been missed because of this under-funded and ignored disease.
“Lost walks in the sun,” read one tag tied onto a pair of sandals, while the note on a pair of baby shoes described how one woman was unable to support her daughter after the birth of her little girl, due to being bed-bound with ME.
Worldwide, ME effects between 15 and 30 million people, but due to it being treated as a psychological illness for many years, it receives only a fraction of the funding of other neurological illnesses, and doctors still aren’t trained in how best to treat patients.
One such patient, is Laura Boyles, who spoke from her wheelchair about just how much ME has affected her, saying:
“I am one of the 2,400 people in Sheffield with ME. I’d much rather define myself in other ways: as a confident woman, as an involved mother with two gorgeous boys, as a loving partner, an enthusiastic writer, a creator of crafty things, a caring daughter, and a rather silly friend. But now, above all, I have ME.
“This — often invisible — thief of an illness, has stolen first fragments, then chunks, then entire portions of my life. Parts of me, upon which my identity used to hang.
“Like more than 75% of people with ME, I am unable to work. This illness has stolen my career. I worked for an Environmental charity for nearly two decades, planting trees, herding small children in school groups, engaging communities, planning, informing, writing, and making good things happen.
“Now, I’m often housebound. Bored as all hell by the same four walls. Frustrated by my need to do, to be, to achieve, when all my body will allow is limited moments of activity, followed by pain, exhaustion, malfunction, [and] a need to rest. Rest, that actually makes little to no difference.”
Sadly, Laura’s story is all too common. Despite its lack of funding, ME is a devastating illness that affects the immune, endocrine, and nervous systems, and for which there is currently no cure. It leaves 25% of patients housebound or bed-bound, and an estimated 75% unable to work.
Part of the problem for UK patients, is that the treatments currently recommended by the National Institute for Health and Care Excellence (NICE), are out-dated and actively harmful, as speaker Carol Binks described to the crowd of gathered campaigners, patients, and their families:
“Research from the US has demonstrated that people with ME have a lower quality of life than people with congestive heart failure, heart attack, [and] MS.
“[But] In spite of the physical devastation wreaked on the bodies of sufferers, and in spite of a reported 9,000 research studies demonstrating biomedical, physical abnormalities in people with ME, the main treatments recommended by NICE are based on behavioural and activity models.
“[These models] follow the assumption that people with ME suffer from false illness beliefs and have a fear of activity. When in reality, people with ME are desperate to get out bed, leave their homes, go out to work, and have a social life.”
The current recommended therapies in the UK, which are Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT), are no longer recommended by the US National Institute of Health, as there is no good evidence for their efficacy.
In fact, a number of ME patients report being actively harmed by these interventions, with many reporting a permanent deterioration in their symptoms, from being only mildly affected when they began treatment, to becoming permanently disabled afterwards.
NICE is currently reviewing its guidelines, following pressure from the UK ME Association, patients, and scientists, but the reviewed guidelines won’t be announced until 2020. In the meantime, they have refused calls for the use of CBT and GET to be stopped immediately, which ME charities and patients say, continues to expose newly-diagnosed and uninformed sufferers to long-term harm.
Without pressure from campaigners, Carol believes, patients simply won’t get the care they need:
“Because the treatment for ME in the UK is based on psychological and behavioural models, biomedical research into the true nature of ME has not received anywhere near the level of funding necessary to address such a widespread and devastating illness.
“Medical students are not taught about the biomedical nature of ME in medical school, so most doctors either have no idea, or are extremely poorly-informed about the true nature of ME.
“Many doctors don’t even believe that ME exists, even though it has been categorised since 1969 as a neurological illness — as opposed to a psychiatric one — by the World Health Organisation.”
Without additional funding for research, patients like Laura, and the rest of the Millions Missing who sent shoes, cards, and messages of hope and heartbreak from around the world, will be left to struggle on without support.
As she concluded her speech, Laura seemed to speak for patients everywhere, as she said:
“I’d like to sit here in my wheelchair and say that I am brave. I want to be courageous. But honestly, this illness is frequently unbearable. I often wonder how I can take even one more day feeling like this.
“We, me, my ME community, my family, we did not choose this. All we want is our lives back, as perfectly imperfect as they were. But the harsh truth is that currently there are no effective treatments, and the recovery rate for ME is a miserable 5%.
“At any one time, it is estimated that 25% of us are too severely affected to leave our homes, or even our beds. UK-wide, that is 62,500 people missing. It means that here, in Sheffield, there are 500–600 people lying in darkness, suffering and silenced, feeling forgotten. We must not let them stay forgotten.
“You can help. There’s a swell of action and hope right now. We need to ride that to real change. And we can all be that change.
“Donate. Speak out. Sign petitions. Share on social media. See us. Accept our truths. It doesn’t take much to be a hero for us.”
Learn more about ME and the Millions Missing campaign here.
Donate to the fundraising campaign here.
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