P R O J E C T I S O L A T I O N

THE Misunderstood

DISEASE

BY ROSALIND TULLOCH

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a neurological disease that affects around 265,000 people in the UK, and yet it is still surrounded by a cloud of misunderstanding.

The first issue many people come across is the confusion between ME and CFS, are they the same or two different conditions? In short, they are the same, it just depends on the person giving your diagnosis and what term they use. Many organisations opt for using “ME, also known as CFS”, but the general consensus nowadays is to refer to it as ME/ CFS.

Common misconceptions from the wider general public have been detrimental to the lives of the real people living with ME/CFS. It is not simply “feeling tired” as many uninformed individuals may muse, it is a recognised neurological disease that has debilitating symptoms that fluctuate continuously.

A lack of education across the healthcare professions has also had a negative effect on the ME community. Leaving individuals feeling distressed, ignored and misunderstood.

There is no simple diagnostic test for ME/CFS, which makes it very tricky to obtain an official diagnosis. ME/CFS presents itself differently within each individual and there is a long list of symptoms that can arise in patients. GPs will essentially have to diagnose by ruling out many other conditions and then are likely to use a list of indicators before confirming diagnosis. It can take years for some patients to receive a diagnosis. The ME Association sets out seven key symptoms that are used to diagnose ME/CFS:

P O S T - E X E R T I O N A L M A L A I S E (PEM)

This is the key diagnostic feature in patients with ME/ CFS. It refers to the way in which symptoms worsen after activity, effects of which can be delayed by 24-72 hours after activity

ACTIVITY- OR EXERCISEINDUCED MUSCLE FATIGUE

Even after a small physical or mental exertion muscles can be in pain or tired

COGNITIVE DYSFUNCTION Short-term problems, difficulty concentrating, problems with word recall

PAIN

Persistent and difficult to control, it can be muscular, rheumatic or neuropathic

SLEEP DISTURBANCE Insomnia, hypersomnia, vivid dreams and restless legs can all affect sleep quality

FLU-LIKE SYMPTOMS A general feeling of being unwell, accompanied by aches, a sore throat, sensitive glands and problems with temperature control

AUTONOMIC SYMPTOMS An inability to tolerate upright activity for any length of time, resulting in lightheadness, spatial disorientation, feeling faint and sweating after standing up.

The NICE guidelines are currently being rewritten following pressure from ME organisations, charities and the wider ME community. This will hopefully help reduce diagnosis times and increase the understanding of ME/CFS in the medical profession and the wider public.

It is important to raise awareness and educate the population on the facts and realities for people living with ME/CFS. By educating people on the debilitating effects that ME/CFS presents and sharing lived experiences, hopefully we can help to change society’s perceptions of ME/CFS and build a truer understanding of what it means to live with this disease.

VOICES OF THE ME/ CFS COMMUNITY

Here we showcase a few ME bloggers who are sharing what it means to them to live with ME/CFS 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 and understanding.

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.

Follow Pippa

Blog: lifeofpippa.co.uk Twitter: @lifeofpippa_ Instagram: @lifeofpippa Facebook: @lifeofpippablog

It is insulting to me that people still buy into the inaccuracies surrounding ME

M.E. 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.

Follow Anna

Blog: the-slow-lane.com Twitter: @theslowlane_ME Instagram: @tea_party_for_m.e Facebook: @theslowlaneME

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 new-born 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.

Follow Sophie

Blog: mummyingandme.com Twitter: @mummyingandme Instagram: @mummyingme Facebook: @mummyingandme

ME FOGGY DOG

Run by Sally Callow

What is myalgic encephalomyelitis to me? I am now over 13 years into the second episode of my 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.

Follow Sally

Advocacy and social enterprise: mefoggydog.org Twitter: @MEFoggyDog Instagram: @mefoggydog Facebook: @FoggyDog