We Are The Millions Missing

All over social media you will see talk of the Millions Missing but more so at the moment as we head towards the next global protest for 2019.

So what is The Millions Missing all about? Well, it near enough says what it is – Millions Missing. Sufferers are missing from their lives and there are millions of us all around the world.

Every year a global campaign is held where we ask for health equality for Myalgic Encephalomyelitis (ME) which is organised by #MEAction

#MEAction is a network of patients fighting for health equality for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Doesn’t it blow your mind that it is millions of patients? Millions of sick people mainly being left to rot in isolation from a seriously misunderstood disease?

The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.  ME affects 15 to 30 million around the world, yet this disease remains invisible and people are missingfrom their own lives.

Last year the Millions Missing protest was the largest ever and took place virtually and in over 100 cities around the world. The story was told 79 times in the press around the world. This year it has to be bigger!

Shoes have been the powerful symbol since the Millions Missing global protest started in 2016. These shoes are laid out and represent what people are missing from their lives due to ME. The images are haunting and each year that I have virtually taken part really makes the reality of the situation hit home. Some people are able to physically attend rallies that are held, others leave shoes outside their own home. All the shoes are left with a little tag telling you a small snippet of the life of the owner. These shoes are from adults and children. Harrowing tales of husband’s no longer having the healthy wife, children no longer having the active mother.

In this day and age surely this cannot be right? It would seem unbelievable but yet it is the truth.

Last year a lovely lady reached out to me on Twitter. I was unable to attend a rally but she took a pair of shoes for me and my son with tags attached and laid them down with the many others in Bristol. This heartwarming action by someone in the ME Community who I have never met symbolises how we all fight together and we are not alone. The photo below is from the Bristol rally where shoes for me and my son were placed.

This year the global protest will take place from Sunday 5th – Sunday 12th May 2019 with key events on Sunday 12th May

Why Sunday 12th May?

“From 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers… commemorate her birthday as a kind of rallying point; their own lamp in the dark.”

This year the UK and Scotland will focus on increasing funding for biomedical research into the diagnosis and treatment of ME.

I would love to attend the rally in Bristol but I feel that a virtual protest is the way forward for me at this time.

I have already shared my story with the ME Association who have a “Go Blue for ME” Campaign which runs at the same time as the Millions Missing protests.

Last year Monuments went blue for ME on 12th May including the Blackpool Tower, the Greystone Bridge in Merseyside, Tyne and Gateshead Millennium Bridges and the Spinnaker Tower in Portsmouth to name but a few.

Rhyl Sky Tower
Tyne Bridge

There were many other events both large and small that took place during that week – physical challenges where friends and family of ME sufferers walked, ran and rode bikes to raise awareness and raise money on behalf of the ME Association, employers such as Subway & Barclays also took part with cake sales and awareness days. There were coffee mornings, arts and craft sales (made by sufferers) and garden parties galore! There was even a new album produced by ME Association supporters Nigel Henshaw, Kieran Moon & Andy Beaumont entitled Music 4 ME and proceeds of that album are being donated to biomedical research.

People wore blue for ME, dyed their hair blue and some even shaved their heads! Some sufferers had birthdays on 12th May and asked for donations to the ME Association rather than receiving gifts and cards.

So much more happened but so much more needs to be done. We are shouting as loud as we can but we need you to help us. We need you to be our voice and help us with raising awareness of this cruel, life destroying disease.

If you feel you are able to help us then please take a look at the websites below.




The millions of ME sufferers are trying their best with what they have. They are raising awareness from their beds. How can that be right? Please do what you can. It only needs to be something small but it will make a huge difference.

If you know someone with ME don’t let them suffer in silence anymore

Faith, Trust & Pixie Dust x

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