Today marks the beginning of ME Awareness Week (11-17 May 2020) and we will be shining a light on the ME community, raising awareness and educating the wider population on what it means to live with ME. Throughout the week we will be showcasing some of the voices of this community and highlighting how you can get involved to help raise awareness of this misunderstood disease.
ME (myalgic encephalomyelitis) affects around 265,000 people in the UK, and yet it is still surrounded by a cloud of misunderstanding.
Common misconceptions from the wider general public have been detrimental to the lives of the real people living with ME. ME is not simply “feeling tired” as many uninformed individuals may muse, it is a recognised neurological disease that has debilitating symptoms that fluctuate continuously.
The main symptoms of ME include post-exertional malaise (PEM), activity-induced muscle fatigue, concentration difficulties, sleep problems and pain, among many others. It can be difficult to diagnose, and the NICE guidelines are currently being rewritten following pressure from ME organisations, charities and the wider ME community.
It can affect anyone, of any age, of any ethnicity and from any background. It does not discriminate.
It is important to raise awareness and educate the population on the facts and realities for people living with ME. By educating people on the debilitating effects that ME presents and sharing lived experiences through media platforms, hopefully we can help to change society’s perceptions of ME and build a truer understanding of what it means to live with this disease.
Blue Sunday is a virtual tea party that was created by blogger Anna Redshaw. In 2012 when Anna was unable to celebrate her birthday in the way she had previously, she asked her loved ones to join her in a virtual capacity to celebrate with tea and cake online. In 2013 Anna decided to use this idea to mark ME Awareness Month in May and it has been taking place every year since.
Taking place on Sunday 17 May, 12pm-3pm, you can get involved by drinking tea, eating cake and featuring something blue; this can be clothes, nails, hair or through any other creative medium. Then take a photo of yourself doing so and share it online through the Facebook Event Page or on Twitter and Instagram using the hashtags #BlueSunday2020 and #TeaPartyForME2020.
If you are in the position to do so please donate the amount you would expect to pay for a cup of tea and a slice of cake in a café to the Just Giving page here.
Voices of the Community
We have enlisted the help of a few bloggers to share what it means to them to live with ME and what they would like you to know about their experience. Reading their blogs opens up an understanding to the disease and will squash those dangerous misconceptions many people have, so please follow them and share with others to help raise awareness.
Life of Pippa
Written by Pippa Stacey
My name is Pippa, and I’ve had the symptoms of ME/CFS since I was a teenager. It took four years for me to receive a clinical diagnosis, and the lack of funding for clinical research and specialist services continues to affect hundreds of thousands of people in this country alone.
Life with ME/CFS can feel incredibly isolating at times, not least due to the stigma and lack of understanding about the true nature of the condition from the wider public. ME/CFS dictates every single decision I make, and every moment of my life, but I still feel hopeful for a more positive future. I hope that one day we’ll finally begin to see breakthroughs in biomedical research that paint a more accurate picture of the struggles we face.
ME, Myself and I
Written by Anna Redshaw
My life was completely thrown off course when, at the age of 21, I had a very sudden and acute onset of what we soon found out was ME. Every single aspect of my life has been, and continues to be, impacted by the fact that my body no longer produces energy as it should. After almost a decade, I am still unable to work, even though flexible employment is available to me. For almost a decade, every single day has been dominated and restricted by ME.
The stigma is incredibly damaging. It is insulting to me that people still buy into the inaccuracies surrounding ME, particularly with regards to tiredness. Would 265,000 in the UK alone, have given up the way of life they cherished just because of tiredness? It is absurd that people still think that when accurate information is now available.
Mummying and ME
Written by Sophie Crowley
ME has turned me into a person I could never have envisaged. I used to be fit and (relatively) healthy. Walking several miles at a time was a regular occurrence, even with a newborn baby in tow.
At the start of my ME journey I refused to think this would affect me and continued to push myself, thinking I could just “think positively” through it. “Good vibes only” was a phrase thoroughly ingrained, my inner ableist refusing to accept the reality of a life-changing condition.
Well, suffice to say, it didn’t work. I gradually got worse. 20 metres became my walking limit. I couldn’t cook. I couldn’t keep up with my then two-year-old. I realised at that point something drastically needed to change. I hired my first electric wheelchair and haven’t looked back.
ME is a complex condition, characterised by one of its main symptoms: post-exertional malaise. In short, this means an exacerbation of symptoms following even the most of simple of exertions. Calling ME “chronic fatigue” is an insult to those who suffer. ME is not simply “being tired all the time”. It is living with flu-like symptoms and having to run a marathon daily. It destroys a person to a skeleton of who they once were. Alongside the typical symptoms of muscle pain, unrefreshing sleep, difficulties with concentration, sufferers have to advocate for themselves, in a world that is rife with misconceptions and mistreatment.
I’ve personally come to terms with mine (and my family’s) life with ME but it still hurts. It hurts to have lost the career I worked so hard to build. It hurts to not be the mummy to my daughter I want to be. And most of all, it hurts to have lost the hobbies that I loved so dearly.
But this is life now. Life on wheels is the way forward, and I won’t look back.
ME Foggy Dog
Run by Sally Callow
What is myalgic encephalomyelitis to me? I am now over 13 years into the second episode of own ME journey. The first episode lasted around 18 months in my teens. It has stolen my hopes and dreams, I am only functioning at 50% of my pre-illness levels. I can only work for around 20 hrs a week, my body shuts down if I attempt more. My social life is very limited, friendships have been lost. There are only so many times you can cancel plans before exasperation sets in.
Loneliness is a big aspect of ME. Who do you think is keeping us company when we are crashed on our beds, often in pain? Company is often futile when you are so depleted of energy that you can’t function. Talking is difficult and sleep is often calling.
The one thing I want people to understand is that ME is not ‘just tiredness’. It’s a complex neurological condition, extreme exhaustion is just one of up to 60 symptoms. ME patients aren’t tired, our cells are tired. We are tired at a cellular level.
Sally also runs an online social enterprise that provides online education courses to health professionals to educate them on ME/CFS – stripylightbulb.com.
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