I was humbled by the ‘millions missing’ yesterday. Now it’s time for unrest.

The Millions Missing demo in London
Steve Topple

I go to a lot of demonstrations in both a personal and professional capacity. But the one I attended on Saturday 12 May for the ‘millions missing’, will stay with me for the rest of my life.

Millions Missing 

I should really explain about myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or just ME. And I should probably explain that I was at the #MillionsMissing demo at BBC Broadcasting House in London. The worldwide campaign is raising awareness of ME. But I won’t – you can read more about all that here.

The shoes at the Missing Millions demo

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I could sit here and write about the notorious PACE trial; a pseudoscientific study into ME so warped that to this day, despite overwhelming evidence showing it’s deeply flawed and harmful, its authors still arrogantly and dogmatically stand by its results. But you can read what I had to say on that, here.

Maybe I should tell you about some of the harrowing stories I heard on Saturday. Like the parents who came to London, leaving their seriously ill daughter in hospital. A daughter, living with ME, who due to a complication of the disease has been in hospital for nearly three weeks. If she wasn’t there, she probably would have died.

I could complain about the lack of support from most MPs, judging by this Twitter search. And I could call out other disabled people’s organisations, some of which I vocally promote at length, which completely ignored Saturday’s action. But I’ll leave that for another time; like I’ll also leave out the medical misogyny that females with ME experience.

Or I could moan about the media coverage of the Millions Missing protest in London, which while to be welcomed was hardly groundbreaking stuff. It probably has a lot to do with organisations like the Science and Media Centre (SMC); a charity that promotes working between the media and the medical and scientific communities. As I reported in March, it has been actively trying to discredit anyone who questions the findings of the PACE trial; again due to alleged vested interests.

The Missing Millions shoes and BBC Broadcasting House

But I won’t. I want to tell you why I think people with ME have been disbelievedstigmatised, given incorrect treatment, or ultimately told it’s ‘all in their heads’ for decades.

The capitalist doctrine against the ME community

As a society, we have for many years seen the creeping marginalisation of various communities. Not least among these is the disabled community. This is because in our brave new world of hyper-corrupt capitalism, anyone who isn’t of financial value to the system is essentially redundant. They are an underclass of people who are intentionally ground down, stripped of social security and ostracised until they either give up and find some form of work – or they shut up, either through isolation or by dying.

As the UN said of the UK government last year, it has helped create a society where disabled people are viewed as “parasites, living on social benefits… and [living on] the taxes of other people”. This applies to the ME community.

The medical community and governments have actively promoted ME as a partly psychological, medically unexplained illness; the PACE trial is testament to this. By doing so, it means social security benefits can be stripped back; insurance companies don’t have to pay out, and those living with the illness are strong armed into either working, or quietly eking out their existence in private, reducing the burden on society.

Sadly for those promoting this eugenicist-like doctrine, they sorely underestimate the resolve of the ME community. I could see it in London on Saturday:

Jackies shoes

The faces of fighters

When I looked around I saw the faces and the eyes of people I know all too well. People who have been ground down by the system; by their own, or their loved one’s illness, and by society. I see it when I look in the eyes of the person I love, Nicola Jeffery, who lives with Ehlers-Danlos syndrome – an illness not dissimilar in its symptoms, and its treatment by the medical community, to ME.

But what I also saw were people who still exuded a fighting spirit. This never ceases to amaze me. I know that when you live with a chronic, debilitating illness or impairment, this in itself is ravaging enough. The last thing people need who are living with their impairments, and batting society disabling them, is to have to fight for the most basic of rights. But they still do. And I was as humbled on Saturday as I have ever been, by seeing so many people unwilling to just roll over and take what society is dishing out at them.

Time for unrest

What will also stay with me from the Missing Millions demo is the face of a young girl, probably my step son’s age – so nearly 12. She is living with ME, and uses a wheelchair. There was a sadness that bore deep into her eyes, almost as if you could measure the pain and anguish she has been living with through her arresting gaze. But I knew she was also a fighter.

I get angry at a lot of things. I’m stopping myself crying while writing this. But none more so than at the disgusting and contemptible treatment of disabled people by the government, medical professionals and parts of society. That beautiful young girl summed up my anger and disgust at the way a community of at least 17 million people has been effectively given a death sentence from those who should be supporting it.

No more. It is, now, ‘time for unrest‘.

A placard from the Missing Millions demo

Can you see ME?

It’s probably most fitting to finish this article with some words from someone living with severe ME. I was privileged to meet Jessica and Samuel Taylor-Bearman on Saturday. Jessica featured in Jen Brea’s groundbreaking film Unrest, and also has a book out soon on her experience of the disease.

She read a poem at Saturday’s Millions Missing, called The Streets of London and has let me reproduce some of it here:

When you walk through the streets of London
And see those empty shoes
Remember they represent people
Who want to be there too
Gone but still suffering
Crying for help yet still they are not heard
Some are fallen angels now
Yet still the battle continues
For acknowledgement and a cure
We are asking you for more.

When you walk through the streets of London
And see those empty shoes
Remember those languishing in pain
Appointment after appointment
Again and again,
We will continue to shout
Until you hear our names
Even though we are isolated from society
The plight of our loved ones that go on to tell
Our stories, our hopes, our belief in change.

Watch Brea’s Millions Missing speech:

Get Involved!

– Find out more about the Millions Missing campaign.

– Read The Canary‘s analysis of the PACE trial.

Featured image via The Canary and additional images via The Canary

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