Star date: 12th May 2018

SHOES, POEMS AND STORIES OF ME AT LARGE #MILLIONSMISSING RALLY

"How many ME patients must die before we get the medical help, care, respect and equality we are entitled to as patients...and as human beings?" Karen Morris

With songs, poems, speeches and a roll call of those who have died from ME, campaigners and sufferers met in St Peter's Square in Manchester today, calling for proper biomedical research and treatment for the disease which affects around 9,000 people in Greater Manchester alone. Dozens of pairs of shoes were laid out representing those missing from their own lives...

Full details here...

The figures were there, laid out on a giant poster for all to see...17-20million people affected by ME* worldwide...250,000 affected in the UK...9,000 affected in Greater Manchester...

...Yet, for ME, there's no cure, no diagnostic tests, no GP education about the disease, and no effective NHS-approved treatments...

...25% of sufferers are house or bed-bound; 75% are unable to work...and yet the disease gets six times less funding than male-pattern baldness, twenty times less funding than multiple sclerosis... The message was simple; 'Stop the neglect!'

That message was put to Greater Manchester Mayor, Andy Burnham, on a low key visit to the large  #MillionsMissing rally in St Peter's Square, Manchester, as he chatted with campaigners struck down by the disease.

Dozens of pairs of shoes were laid out in the Square, each with a name and poignant message...

From Salford, there was a pair of shoes from Shona, who's been ill for four years with ME. She said in her message that she misses 'teaching and banter with work colleagues...Being part of something...'

...From Caroline came a pair of white court shoes... 'Missing since July 2016, mostly housebound. Missing working, socialising, holidays, days out and living life to the full and desperate for a cure and more support...'

...And the most poignant of all, a pair of bright pink Doc Martens from Merryn of Norden, with the label: Years ill: 6 years (now deceased aged 21). I miss: 'My Life'...

#MissingMillions is a global day of action to draw attention to the plight of sufferers on ME Awareness Day. Speakers, like Becky Hewson, told about their own lives and how they manage day to day...

"I couldn't read because my brain struggled to read the words on the page; being out in public was just too much to bear; I could rarely walk more than one hundred yards before needing to stop, and had to drag my feet along the ground as I was too weak to lift them" she recalled "Going online was impossible because the screen was too light; texting was too painful for my hands and phone calls were impossible as I couldn't hear what people were saying...

"I was trapped by my own body with no way forward" she explained "It was at this point that I considered suicide as a genuine means of getting out of this hellish existence. However, I said to myself, 'Becky do you want to sink or do you want to swim?' And I thought 'However hard, swim it is'...
 
"When your GP knows nothing about your illness you must become your own expert, so I read everything I could and gradually found ways to help my body heal itself" she added "Seven years on from my lowest point I have found a way to adjust my life...I now work for myself part time from home, I can take my dog for a walk and am starting to socialise, yet there are still so many things I cannot do and that restrict my life.

"I am painfully aware that I am one of the few lucky ones who has some semblance of a normal life" she said "Yet there are still so many unanswered questions. Could I have a baby without causing a relapse? Will I ever be able to exercise again? In 2018 we should have the answers to these questions but we don't..."

Becky said that her story reflected the experience of many other ME sufferers...

"Too many of us are forced to live our lives without a clear plan for treatment or a cure, yet even though this disease has been around for forty years or more nothing is done for ME...

"We need real investment in research, guaranteeing that people suffering from this disease will no longer be relegated to the shadows for half their lives" she concluded "That's why we are calling on MPs to dramatically increase funding into biomedical ME research and treatment to help alleviate the millions currently missing from their lives."

Target for the day was Jeremy Hunt, Tory Secretary of State for Health and Social Care... 'We die. He does nothing' stated one of the placards, while others had the message 'Can you see ME now?'.

Indeed, poems read out at the rally made reference to the invisibility of the disease in the eyes of many; that somehow ME isn't 'real'...expressed in a verse by York ME group's Bill Clayton...

'ME isn't real you know
ME is all just fake
I chose to give up work you know
And rely upon the state

ME isn't real you know
It's all just in my mind
I just fancied giving up on everything in my life 

ME isn't real you know
ME is just talk
I just chose to give up running, to use a stick or chair to walk

ME isn't real you know
The pain is just in my head
In fact it's also in my arms, my back, my ribs, my legs

ME isn't real you say
It's all just pretend
You think I chose my life to lose, as well as my final friends

...All we ask for is belief
It's taken our lives like a skulking thief...'

Other poems by young people and older sufferers echoed the sentiments, demanding to be respected, demanding funding for a cure and treatment.

Meanwhile, Karen Morris - a patient who runs an ME support group in Salford, and who set up the groundbreaking national ME feedback project with Healthwatch and Greater Manchester Clinical Commissioning Groups (CCG) - went much further in her speech...

She not only called for more biomedical research but also slated bad engagement practices affecting patient's rights under the NHS constitution, and highlighted problems with the accountability and transparency of Healthwatch and the CCGs...

"Why has nothing been done to improve services in Greater Manchester?" she asked "Why is negative feedback on services ignored, with those who complain being victimised and blacklisted?...

"Why are there secret meetings with the same chosen representatives, and no public information, when there are 9,000 patients in Greater Manchester?" she added "How many ME patients must die before we get the medical help, care, respect and equality we are entitled to as patients...and as human beings?"

She asked for ME patients to keep giving feedback to organisations like Patients Association, Patients' Voices and Care Opinion, and, to loud cheers, ended by saying "250,000 people in the UK is a large voice and we will not be ignored anymore..."

The ME ball is now firmly in the court of GM Mayor Andy Burnham and his devolved health services to sort this out...

Karen Morris has posted a special video, made from her bed, on the plight of ME sufferers and the attitude of the authorities – click here to view it

Other videos from today's rally can be viewed on Karen's YouTube channel – click here

* ME stands for Myalgic Encephalomyelitis, and there is the related Chronic Fatigue Syndrome (CFS). Both cause dysregulation of the immune system and the nervous system.