M.E. Awareness Week, Part I: Raising Awareness of a Little-Known Condition

Image by ME Foggy Dog; www.mefoggydog.org

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 part I of this week’s 6-part series, Sally explores the history of International M.E. Awareness Day (12th May) and shares her own experience of diagnosis as a sufferer herself.

Thank you to Star and Crescent for allowing me to write this week-long ‘special feature’ to celebrate Myalgic Encephalomyelitis (M.E) Awareness week, with the pinnacle being International M.E Awareness day on Saturday May 12.

As a day of awareness, the 12th May is shared by a few illnesses, it is also an awareness day for Fibromyalgia, Gulf War Syndrome, and Multiple Chemical Sensitivity; all of which come under the umbrella of Chronic Immunological and Neurological Diseases (CIND). However, I am an M.E sufferer and advocate and so am concentrating solely on M.E.

International M.E Awareness day (IMEAD) originated 26 years ago and was initially created by an organisation called Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (RESCIND), which is no longer online. The founder of RESCIND, Tom Hennessy, was based in the US but clearly understood the need for an international event. The issues encountered by those affected by chronic illness are the same the world over and the need for acceptance and understanding is the same whatever our location.

Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health. It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.

Quote from the original RESCIND website

Tom Hennessy had himself lived with M.E for 25 years and clearly understood the need for those living with the illness to be heard. Sadly, he passed away in 2013 aged 59.

Like Tom, I try to make the voices of M.E sufferers heard. Through my advocacy work with ME Foggy Dog, I aim to do this all year round, but my efforts hugely increase around 12th May each year.

The 12th May was chosen as the date for IMEAD because it was Florence Nightingale’s birthday. She became chronically ill in her mid-30s with an M.E-like illness that, for the last 50 years of her life, left her bedridden much of the time. Despite this she went on to found the world’s first School of Nursing. It is exceptionally doubtful that Florence ever received a firm diagnosis of her condition as the diagnostic tools wouldn’t have been available, however, we receive a symptoms-based diagnosis even now in 2018. The struggle for a diagnosis is just as prevalent as it would have been in her day.

The universal colour of M.E Awareness Day is blue, and we hope to see high swathes of blue around the globe as we mark this special day. The Spinnaker Tower will be lit up in blue lights to mark the occasion, as will Niagara Falls (IMEAD is marked every year at the Falls).

One of the reasons we need this special day to raise awareness is that M.E is the last common illness that very little is known about.

In the UK, 250,000 have been diagnosed with the condition, but there are many thousands more who are still going through a long drawn out period of diagnosis. It took years for me to get a diagnosis; years of tests and hospital visits in order to finally walk away with a positive outcome.

It’s hard to explain why anyone would want something to show up in a blood test or on a MRI scan. However, when you are repeatedly told by doctors that you are imagining your ill health, you become desperate for something – anything – to show up in a test. The problem is that M.E does not show up in any routine test, so sufferers are diagnosed by our symptoms. The routine tests our GPs refer us for have to rule out every other possibility, so we are diagnosed with M.E only when there is nothing else left. This is why it takes so long.

I am an NHS patient, so I would wait approximately  5 weeks for my hospital referral to turn into a hospital appointment. That appointment wouldn’t shed light on my illness, so I would be sent back to my GP to start looking at other options. This cycle was repeated over and over again. Before I knew it, more than 2 years had passed. In the meantime, nothing had been diagnosed to help with my extreme fatigue, vertigo, IBS, poor concentration, memory loss, muscle fatigue and many more symptoms. I had a very long list.

My story is a common one, it is rare to come across a sufferer that has waited 1 year or less to get a diagnosis, and where it does occur, in many cases these patients have received private treatment.

Unfortunately, back then I believed that getting a diagnosis was my end goal. I believed it would make everything better, I would get treatment and I would be able to get on with my life as normal. How wrong I was.

There is no treatment for M.E. There are treatments for each individual symptom but not for the condition itself. Psychiatrists would have us – and importantly, you, the public – believe the condition is all in our heads and that it can be treated with therapy and exercise. This has caused the M.E community much distress and harm.

The core reality of living with M.E is that exercise exacerbates our symptoms. Even climbing up one flight of stairs can make some sufferers bedbound for days, if not weeks. So, for doctors, scientists, and, consequently, the media to suggest that we can get better through increasing our activity is downright insulting.

This ‘special feature’ week on Star & Crescent will shed light on the complex nature of M.E and hopefully lead to greater understanding and awareness – for everyone.

You can get involved in this week’s awareness raising by coming along or helping to spread the word about two exciting events:

Friday 11th May 2018, 12.30 – 2pm, M.E Awareness Week – Go Blue!

Join Sally at the Frank Sorrell Centre for a coffee and a chat, and find out more about ME Foggy Dog and M.E/CFS. This is a family friendly event with activities for the whole family to take part in. ALL WELCOME!

Find out more here.

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.