M.E. Awareness Week, Part VI: Making the Invisible Visible

Image by Sally Callow, ME Foggy Dog.

Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In the final part of this week’s 6-part series on International M.E Awareness Day, Sally reports on campaigning to make this invisible condition visible.

Myalgic Encephalomyelitis (M.E) is a global illness and today’s International M.E Awareness Day recognises the impact it has on 17-30 million people around the world. There are events taking place worldwide today – including here in Portsmouth –  to raise awareness of this severely debilitating condition.

M.E doesn’t discriminate in terms of age, race or gender. It’s nice like that. However, the notion that M.E is ‘female hysteria’ also affects men by adding an additional stigma to the disease and may even prevent men from coming forward.

You will often read the statistic that over 17 million people worldwide have M.E. However, this figure is based on what ME Research UK describe as ‘crude prevalence estimates from developed countries (0.2 to 0.4%, including children) applied to the 7 billion inhabitants of planet Earth’.

Image courtesy of ME Foggy Dog.

My charity brand soft toy, Foggy, recently visited South Africa as part of his international awareness raising tour (you can follow his travels here). The woman who let Foggy accompany her on a work trip, Kat, attempted to spread awareness of M.E in the townships that they visited.

Everybody she spoke to denied the existence of M.E. It’s hard to know whether they didn’t know of the condition or whether they were prejudiced against it. I spoke to the founder of the ME Association of South Africa, Retha Viviers, and she told me that one of her organisation’s objectives is to reach the townships and rural areas of South Africa to raise awareness of the condition and offer support to sufferers. I wish her luck in her endeavours, it will require gargantuan effort and Retha is an M.E sufferer herself.

So who can get M.E? Anyone. It can affect anyone at any age, though it is most common to be struck down aged between 20-40 years. There are 21,000 children and young adults living with M.E in the UK, though this is likely to be a low estimate as more thousands will be stuck in the long process of being diagnosed.

I had M.E in my childhood, experiencing symptoms for 2 years during my teens. I had a lot of tests but never got a diagnosis. I now believe this was M.E.  Luckily for me, it disappeared just as randomly as it appeared and I was M.E-free by 16. Since setting up ME Foggy Dog, I have realised that it isn’t uncommon to have M.E twice: in childhood, and again later in life, but I wouldn’t have known that without doing my own research online. If you are a parent with a child who is in the process of being diagnosed, I strongly recommend the Tymes Trust, the only national ME charity dedicated to children and young people with ME and their families. They will be able to give support and advice to help your child, and help their school to understand and support what they are going through.

Today, you can get a sense of how many people are affected by M.E and the impact it has on their lives by following the #MillionsMissing campaign.

Image taken from ME Action website.

Organised by ME Action, #MillionsMissing is a global movement for health equality that started in 2016. One of the biggest events taking place in various cities worldwide is the placement of pairs of shoes in public places (or sharing images on social media) to represent the M.E sufferers who are ‘missing’ from society.

The rows upon rows of shoes of people who aren’t physically able to take part in everyday public life are represented by their shoes. It is a harrowing sight and I am sure the impact of previous years will be replicated today.

Sufferers are also encouraged to take photos of their own shoes that symbolise what M.E has taken from them and share them on social media with the #MillionsMissing hashtag. My photo in 2016 (see main image above) was of ‘Girl’s Night Out’ dancing shoes and a cocktail glass (I had bad brain fog that day and got the hashtag wrong!) .

I can’t socialise like I could pre-M.E and I miss that. I miss the friendships and good times. Others might take photos of football boots to symbolise their inability to play football and be active. Ballerina shoes: trainers: walking boots: wellingtons, all symbolise careers and hobbies that are now out of reach.

I encourage you all to take a look at the hashtag #MillionsMissing on Twitter and Instagram and get involved.

There is a terrible irony that people with an energy-stealing illness are having to work so hard to be recognised and treated. M.E is an invisible disability, we have no external markers to show that we are sick. Moderate and severe sufferers may use walking aids or wheelchairs to make rare ventures outside, but many of us have no symbols to represent our suffering.

Misunderstanding of our illness causes us to remain silent, to keep our health under wraps, as if it is a dirty secret. M.E is a health condition and shouldn’t be something we feel shame or guilt over. In the same way that mental health issues are being brought out into the light, charities and myself are working hard to make the invisible visible.

If this week-long special feature on S&C has ignited an interest in M.E, visit ME Foggy Dog and help us to break through barriers, get this condition recognised by the medical profession, and better understood and accepted by society. And don’t forget to come along to today’s event at Central Library – more details below!

Saturday 12th May 2018, 12.30 – 2pm, International M.E Awareness Day – Go Blue!

Join Sally for a coffee morning in the Lily & Lime cafe in Central Library. Wear blue to help spread the message!

This is a family friendly event with activities for the whole family. Take part in our M.E quiz to be in with a chance of winning a pack of Quirk, a family fun card game and 2x best seller in the UK, it is nominated for 4 awards in gaming this year and is showcasing at the UK Games Expo in Birmingham and International Spieltage in Essen, Germany 2018. The prize is one of the first 1000 to be printed.

Find out more here.

And of course, read the rest of  Sally’s articles from this week here on S&C.

Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram.

Main image courtesy of ME Foggy Dog.