Local charities and support groups congregated as part of the #MillionsMissing movement for ME Awareness.
As the sun beamed brightly through the trees in Pigeon Park last Friday, a small crowd, all wearing red t-shirts made their way to the St Philips Cathedral in the city centre. Some were in wheelchairs and some had pamphlets ready to be given out.
What stood out was the number of people who stood by, with a pair of shoes and a note in their hands.
“We’re carrying these shoes for all those who are too sick to be here, all those who are missing from our lives because they can’t make it out,” said a volunteer.
“These shoes belong to people affected by Myalgic Encephalomyelitis.”
Also called Chronic fatigue syndrome (CFS), much to the disdain of those with the condition, ME is a long-term illness with a wide range of symptoms. It’s defining feature – extreme tiredness.
Other symptoms include trouble sleeping, muscle or joint pains, headaches, problems with remembering or concentrating, flu-like symptoms, dizziness or palpitations.
The NHS also warns against the adverse effects ME can have on one’s mental and emotional health.
— charlie (@chaarlesx) April 5, 2018
This condition can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s.
Local ME Awareness groups, MEAction and several other charities demonstrated to raise awareness about the condition outside Pigeon Park. Kathryn Harris was one of them.
Talking about the condition she said: “A woman brought her son’s shoes. He’s 14 and had the shoes new in September. He’s only been able to wear them once as he’s been too ill to attend school.”
Harris, a blogger, found out about the #MillionsMissing protest because of her girlfriend’s mother, who was one of the organisers.
“For so many people out there with ME, organising and being a part of something like this is difficult if not impossible. I went to help because raising awareness was paramount and there are some fundamental issues with the NICE guidelines. They are actively harming people,” she said.
Why a demonstration?
The demonstrators contested the definition of the condition.
A Royal Pharmaceutical Company resource from 2016 says,
Chronic fatigue syndrome, or myalgic encephalomyelitis, has been largely dismissed as psychological. But recent trials of antiviral and immunosuppressant drugs have yielded encouraging results, suggesting a complex disease mechanism at play that researchers are hopeful they might be able to treat.
“For too long ME has been labelled as Chronic Fatigue Syndrome (CFS). This is like if Dementia was being called Chronic Forgetfulness Syndrome. ME is a complex neurological disorder and it needs to be recognised and researched as such,” adds Harris.
Gatherings and protests have been taking place world over to start a conversation about ME.
Birmingham’s event had three primary aims – to raise awareness about the condition, to raise the issue of parity of funding with other chronic health conditions and to get Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) removed with immediate effect from the NICE guidelines.
@MEActNet Campaigning for better healthcare for #myalgicencephalomyelitis patients in Birmingham yesterday. #MILLIONSMISSING #CanyouseeMEnow #millionsmissingbirmingham #MEawarenessweek pic.twitter.com/ElDIaHgfXi
— Emma Beynon (Norman) (@EmmaGNorman) May 12, 2018
Sue Worall, from the Walsall ME Group Committee also expressed her displeasure at the facilities in place in the city to care for people with ME.
“Treatment here is based on the now discredited treatments of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).
“The regional centre is based at the Barbarry, lumping ME in with mental health disorder when it has been recognised as neurological by WHO since 1969.
“The #MillionsMissing visibility action in Birmingham and in cities around the world is campaigning to stop GET and CBT as the only recognised management for ME.”
Starting a conversation
Between 12pm and 3pm, volunteers could be seen collecting signatures for a petition to reform the NICE Guidelines. There was an information desk with campaigners talking to people about the condition. Pamphlets were also distributed to passersby.
Harris adds, “Most people who stopped to talk hadn’t heard about ME so we definitely raised awareness of it.”
Shoes became a symbol of all those people who aren’t able to go about their day – of people who can no longer use them because of their condition. The idea is to create a meaningful conversation.
Keeping up with that spirit, ImpactHub Birmingham will be screening the documentary ‘Unrest‘.
The film follows the story of a woman dealing with the condition.
Lots of really exciting things coming to @ImpactHubBrum over the next few weeks in our #HubTalks series, @ThatNikkiBi has been working her magic, come and expand your mind.
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— Imandeep Kaur (@ImmyKaur) May 9, 2018