M.E- The Illness You Can't See

I have an illness called M.E (Myalgic-encephalomyelitis) And if you're wondering how on earth you're supposed to pronounce that mouthful?...My-al-gic (jic) en-ceph (seff) alo-mye (my) lit (light) is. Put it together and what have you got? Bibbity Bobbity Boo! Unfortunately, there's nothing magical about M.E.

M.E. is a serious, complex, chronic physical illness that can affect multiple systems throughout the body. It isn't simply being tired. It isn't needing an early night and it certainly isn't something you can just "push through".

The exhaustion can be totally overwhelming, the kind of deep, bone-shattering, painful exhaustion that can make the simplest things feel like climbing a mountain. People with M.E. can experience a huge range of symptoms, including: (Read in Gladiator voice)... ARE YOU READY?

Profound exhaustion and reduced energy
Post-exertional malaise (PEM) — a worsening of symptoms after even relatively minor physical, mental or emotional activity, sometimes delayed by hours or days
Problems with memory, concentration and information processing — commonly described as "brain fog"
Muscle and joint pain, weakness, spasms and abnormal sensations
Headaches and flu-like symptoms
Problems with balance and coordination
Sensitivity to light, sound, touch and other sensory stimulation
Sleep that doesn't refresh or restore
Dizziness and problems with standing or remaining upright
Problems affecting the digestive system, bowel and bladder
Difficulties with eating and swallowing, including unsafe swallowing in some people
Breathing and autonomic symptoms
And, in some people, significant cardiovascular or neurological symptoms

And that's only part of the list. If you got fed up reading that little bit, Imagine what it's like to actually live with?

M.E can affect anyone: any age, any gender, any culture and any background. One day, around 35 years ago, I was struck down with flu. I had no idea that life was about to change forever and that I'd never recover. My health continued to deteriorate and it was a six year battle to get a diagnosis. I had to fight every step of the way with a GP that was locked into the word psychological with the only offering being antidepressants that I initially refused. But this isn't just about my experience.

M.E. has a long and complicated history, and despite decades of research, many people living with it continue to experience disbelief, dismissal, inadequate care and outdated ideas about what the illness actually is, that's not just frustrating, it's a scandal, the M.E scandal.

Imagine being seriously ill, knowing your body is not functioning properly, and then having to spend years convincing the very people you turn to for help that you are actually ill? In the meantime everyone from NHS to the media are trying to convince you and the public that it's all in your head. Imagine losing the life that you had, being so poorly that you lose your job, your social life, but then all those who are supposed to help instead Gaslight, mock, dismiss, abuse?

I consider myself a tough cookie, but I can honestly say that nothing has been as frightening as being on the receiving end of such mass ignorance and prejudice, it felt as though we were living in medieval times, patients tipped out of their wheelchairs into the deep end of a pool, the premise being if they sunk they were telling the truth and had little energy but if they splashed around to try and save themselves from drowning it would prove it was all psychological. Sufferers suddenly being dragged from their homes and off the street, kicking and screaming and placed in psychiatric units. This was 80's/90's, can you imagine ?

There are people with M.E who have become severely affected and have spent years, sometimes decades bedbound, reduced to the smallest of worlds. There are people who have died. Deaths that have been associated with complications of severe illness, and then there are those who, after years of suffering and a lack of adequate support, have reached a point where they no longer feel able to continue. That should stop us in our tracks.Whatever our individual experiences of M.E, the human cost of this illness cannot be ignored.

We owe it to those living with M.E now and to those who have died to do better, not with pity, but With research, proper medical understanding, appropriate care, respect and action.

One of the organisations I support is the UK charity Invest in ME Research. It's an independent charity dedicated to funding and facilitating biomedical research into M.E, as well as education and advocacy. It is entirely volunteer run, with no salaried staff and works internationally to support research and collaboration. This is one of the reasons they stand out to me. They're not simply talking about change they're helping fund the science needed to understand M.E properly. Their work includes funding researchers, PhD students and fellowships, supporting international research collaboration and developing the vision for a UK/European Centre of Excellence for M.E at Norwich Research Park.

And now there are also millions of people around the world living with Long Covid, with some developing an illness that shares important features with M.E. The growing recognition of post-viral illness has brought renewed attention to the science surrounding M.E, something I hope will ultimately benefit everyone living with these conditions.

And to end, If you've got this far, thank you 😁

If you're an individual, organisation or company looking for a charity to support, can I ask you to take five minutes out of your busy schedule to check out Invest in ME Research. Small charities can make a very big noise.

To my fellow M.E warriors, let's keep going 💪

I wrote this poem One Stupid Dot and "What's Up TV" asked if they could use it for a piece, I love what they did with it and hope it continues to resonate with people and help raise awareness.