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Showing posts from May, 2017

#MillionsMissing protest London 12.05.17

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My address to crowd outside Department of Health, Whitehall
Our small gathering here today is just the tip of the iceberg.

We are standing in for the Millions Missing worldwide: the millions of people affected by the multi-systemic disease ME aka chronic fatigue syndrome who are too ill to be here today.

There are 250K people in the UK with ME and many can’t be here because they've been trapped in bed for years by this most crippling of illnesses, and they’ve been abandoned by our healthcare system and forgotten by the world.

The shoes you see here belong to some of those who can’t be here in person but who want you to hear their voice and witness the injustice they face. And they want the Dept of Health to listen and to act on this injustice.

The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today.

But here in the UK we’ve endured something perhaps even more cruel than n…

Be a part of the Chronic Illness Inclusion Project

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Posting up a selfie from my sick bed and dictating into my smartphone is my political action to refuse invisibility with chronic illness.


It’s time to get out of my comfort zone and get personal, because I really need a favour from you.


I normally leave myself out of my activism. I prefer the impersonal world of policy research. It’s not that I think this is a better way to achieve change necessarily; it's just that I’m a natural introvert and a bit of a geek.


But today is a severe ME day for me. The sleep thief came in the night, parked its truck on my chest, set energy-sucking leeches onto my limbs and poured sand through my eyesockets into my brain. So the researcher brain is on strike.


My new project with the Centre for Welfare Reform is all about refusing the invisibility that comes with chronic illness. It's about building a bridge between the chronic illness community that exists online and the real-world people who make the decisions about our lives.


Through all t…