The torture and wear of the past two years,

Battling through life amongst a wave of anxiety and fears.

Terrifying thoughts that I cannot face any more,

To repeat this day tomorrow, again? But what for?

The prison of my home, the shame and unease,

That paralyses my core, buckling at the knees.

The panic that consumes my fragile existence,

Walking down the street, whilst pushing through with persistence.

My trembling body, the fear of the unknown,

Not knowing when I will be dealt yet another blow.

Symptoms that swallow me into the belly of the whale,

Consuming my world, my heart, with my face so pale.

My brain feels cloudy, my mind is lost,

Words and memories that are temporarily cost.

Muscles aching and my glands so sore,

A simple walk which brings dizziness and more.

Not to forget the relentless fatigue,

Something that’s in an entirely different league.

And how it’s made worse with any exercise,

How am I meant to avoid my inevitable demise?

Another hospital and another appointment,

Another nurse trying not to make this a disappointment.

The countless doctors telling me they cannot help,

With their soul destroying looks that make me melt.

Into a fit of frenzy, spiralling further into the void,

When will this end, I am being destroyed.

Look after yourself is what they always say,

Don’t you think I’ve been trying this since the first day?

The pain of missing out for the umpteenth time,

Cancelling plans that I know would have been divine.

But here I am, pretending that all is fine,

Back in my room, wrestling these dark thoughts that are mine.

The desperation to run, to go wild and free,

To move, dance, drink and be unapologetically me.

To break free from this relentless cycle,

A life that is halted, one that is stifled.

And craving the feeling of sweat on my skin,

From escaping this torture that I am in.

Meeting new people who ask what I’m doing,

Everyone thinking, but you look fine and you’re moving?

Little do they know that deep down inside,

I feel completely ashamed, and so desperate to hide.

The longing I feel to move along with my friends,

To forge my career and adventures, but I pretend

That everything is fine and I’m doing so well,

When all I can think about is this cursed spell.

I am twenty-three and should be chasing the world,

But instead I am here, looking from afar and curled

Up in my duvet and with the sound of the wind,

To accompany my sadness and loneliness within.

Yet amongst this hopelessness and unimaginable loss,

The feeling that I’ve become so easy to toss,

I’ve learnt the depth of my bravery and resilience,

To fight and survive, I am truly full of brilliance.

Continuing to put one foot in front of the other,

When life sets me back and it takes months to recover.

I have the strength and endurance of robust, thick iron

With the immense, striking courage of a mighty lion.

And I have finally accepted that life is not lost,

I just have a different life to the one I craved most.

But without this experience I wouldn’t be this magnificent girl,

Enjoying the minutiae, grateful for all good in the world.

My love of all art, my friends and my family,

Who allow me to cope and to avoid insanity.

The birds that sing and the happiness I feel,

When the sun comes out and when cooking each meal.

My growing confidence and my redoubtable pride,

Something that I have nurtured, taken in my stride.

And loving my body for keeping me alive,

When life has so desperately tried to cut it with a knife.

I am still here and I am always fighting,

Still in pain and I am forever inviting

Health and happiness into my delicate soul,

But now I know it’s a journey, one I cannot control.

And is this not the most important lesson on offer,

That we are immortal and need to be present to prosper.

That life is too short and full of uncertainty,

So be wholeheartedly you, for all of eternity.

Twenty-three and through my gruelling M.E,

I am fortunate enough to learn who I might be.

What is M.E?

M.E. (Myalgic Encephalomyelitis), also called Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. Around one in four people with ME/CFS are severely affected by the condition. They are left house or bed bound, unable to properly care for themselves or even wash and feed themselves properly, sometimes for many years at a time. Fibromyalgia is also related to ME/CFS with very similar symptoms and triggers, however pain is often the predominant symptom rather than fatigue.

M.E. affects 17 million people worldwide - 260,000 people in the UK and 1 million people in the US (this implies a prevalence rate of 1 in 250 people.) This is more prevalent than Multiple Sclerosis (110,000 in the UK https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis) and not much rarer than Rheumatoid Arthritis (400,000 in the UK), yet the disparity in funding is significant (see figure below). Most medical schools do not have ME/CFS as part of their training and consequently there is little understanding from the medical community. At present, the NHS spends £14 million on specialised M.E./CFS services per year, but the illness costs the UK economy at least £3.3 billion annually in healthcare costs, disability-related welfare, productivity loss and unpaid informal care.

(Table sourced from: https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf)

The cause of M.E./CFS is unknown however each case is thought to have a different trigger. It is often triggered by a severe viral infection including glandular fever (Epstein Barr virus), herpes simplex, VZV, HHV-6 and CMV to name a few. Other triggers include bacterial infections such as toxoplasma, TB and Lyme disease. There is a lot of research which implicates that M.E./CFS may be an autoimmune disease, but it is yet to be conclusive. Some studies indicate that genes may play a part, as sometimes it affects more than one family member. Other less likely triggers include immunisation, physical trauma or certain toxic substances. These physical triggers, combined with stressful life events, are believed to put the body into a state of maladaptive stress which can then develop into ME/CFS.

For a long time M.E./CFS was coined as ‘yuppie flu’ because there is no diagnostic tool to determine the illness; recurrent patterns amongst patients are clear and apparent, however. There is systemic disturbance to the immune, gastrointestinal, neurological, cardiological, muscular and endocrinological systems. In 2017, Australian researchers announced that they had identified a blood protein with the potential to become a test for ME/CFS. In April 2019, researchers at Stanford said they were piloting another type of blood test to identify the illness based on how a person’s immune cells respond to stress. There are yet to be follow-ups on this.

The National Institute for Health and Care Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. Other research shows that people with M.E. score lower overall on health-related quality of life tests than most other chronic conditions (The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Hvidberg et al, 2015).

Current treatment guidelines by the NHS offer cognitive behavioural therapy and graded exercise therapy, both of which are not sufficient enough to treat this illness. It has been wrongly suggested that the illness could be psychosomatic in nature and patients are often given antidepressants as treatment. M.E./CFS is NOT the same as depression; however anxiety and depression are very common as a result of the disabling nature of the illness and the lack of support that goes with it. As of this year, the U.K. parliament has issued a bill to ensure that the NHS revises their treatment guidelines which will be released in October 2020.

Dr Nancy Klimas, an AIDS and ME/CFS researcher and clinician, splits her clinical time between the two illnesses. "My HIV patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. My CFS patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I can tell you that if I had to choose between the two illnesses [AIDS and ME/CFS] I would rather have HIV.”

Other Sources from Action for ME:

“It’s like having glandular fever, taking your glandular fever on an all-night drinking binge, then taking your glandular fever and your hangover and doing a 30km forced march over the Brecon Beacons. The way you would feel at the end of that is how it feels to have M.E. every day. It is like being on a carousel: you have ups and downs but you can never get off.” (https:// www.actionforme.org.uk/what-is-me/introduction/)

“I feel like I wake up with a mattress on me most mornings. When I wake up with post-exertional malaise, there is an elephant sitting on the mattress. He stays there for days. He steals my words and fills my brain with wet cotton wool and wraps his trunk around my neck, so I struggle to swallow.” (https://www.actionforme.org.uk/what-is-me/introduction/)