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Living with 'one of the last major diseases we know nothing about'

Imagine your worst ever hangover combined with the flu. Now imagine feeling like that 24/7 for the rest of your life.

Sean O Briain

RONALD DAVIS PhD, Professor of Biochemistry and Genetics at Stanford University called it “one of the last major diseases we know nothing about”.

But the man who heads the Stanford Genome Technology Center knows all too well about the disease.

His son, Whitney Dafoe, an award-winning photographer, has spent years battling the illness and now spends his days in a darkened room, fed through tubes.

ME (Myalgic Encephalomyelitis), otherwise known as CFS (Chronic Fatigue Syndrome), is one of the most misunderstood diseases in modern times.

It’s an illness that I have spent the past 11 years fighting in more ways than one.

Not only have I had to fight the disease itself, but I’ve also had to fight the attitudes towards the disease by the general public and health professionals.

Misconceptions

Trying to articulate to the general public what it actually is has been a difficult task.

You see, ME/CFS isn’t an illness that just leaves you feeling “a little tired”.

It is disease that leaves the patient with relentless mental and physical exhaustion.

Unlike a normal person who can sleep to alleviate feeling tired, the type of fatigue that comes with ME/CFS is never relieved by sleep.

It is with you in one form or another 24/7.

And with the fatigue comes a myriad of other symptoms – which include cognitive impairment, poor short-term memory, muscle and joint pain, gastrointestinal problems and food intolerances.

And that’s before we even begin to touch on the mental health issues associated with ME/CFS like depression and anxiety.

I can list off all of the symptoms but I don’t think it would be enough to resonate with the average reader. Imagine your worst ever hangover combined with the flu. Now imagine feeling like that 24/7 for the rest of your life.

That isn’t an exact comparison but it allows you to better understand what it is like with live with it.

ME/CFS is a hidden illness.

To the general public, someone with the disease will generally appear normal. But looks can be deceiving.

Outside of looking a bit pale, there are no immediate visual clues to indicate how much the person is struggling.

It’s only when you are around them everyday do you begin to notice the impact it has on them.

Seeing someone for an hour or two once a week, you don’t get to see what the person had to invest in order to visit you. Resting for 14 hours a day and a cocktail of vitamins and anxiety medicine just to get out to have a cup of tea with you isn’t something you’ll be readily conscious of.

It’s not “all in our head”

Of all the misconceptions about ME/CFS, the largest one – most recently promoted by neurologist Suzanne O’Sullivan - is that it is a psychosomatic illness: That it is really just “all in our heads”, i.e. that we prolong our illness through psychological and behavioural patterns.

Unfortunately for O’Sullivan, whose claims have been refuted on a number of occasions, the evidence simply isn’t in her favour. The World Health Organisation (WHO) classifies ME/CFS as a neurological condition.

A recent report by the US Institute of Medicine titled ‘Beyond ME/CFS – Redefining an Illness’ stated that the primary message of the committee’s report was that ‘ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients’.

There are many clinical studies on ME/CFS which demonstrate that the disease is not psychosomatic and is indeed physiological in nature.

A study published in May 2015 by Armstrong, McGregor, et al. found impairments in both energy metabolism and oxidative stress pathways, along with a reduction in amino acids levels.

Another study in 2012 which analysed the brain of patients with ME/CFS showed differences in grey and white matter volume when compared to healthy subjects.

Additionally results from an ongoing “big data” study by the Open Medicine Foundation – headed by Davis – has indicated some serious mitochondrial abnormalities in ME/CFS patients.

The results were serious enough to warrant leading mitochondrial expert Robert Naviaux to join the study, which last month alone has received $550,000 from two private donors in support of their work.

The days of misrepresenting ME/CFS as a psychosomatic illness have to end. Not only does it trivialise the disease, it makes it more difficult for society to be empathetic. It’s no wonder that it once was called “Yuppie Flu”.

Quality of Life and Mental Health

ME/CFS is an illness that has a profound impact on a patient’s life. A 2015 study titled “The Health Related Quality of Life for Patients with ME/CFS” compared and contrasted the quality of life (QOL) of ME/CFS patients against other long-term illnesses.

The conclusion was shocking to some – but not to those of us with the disease.

ME/CFS received the lowest QOL score of all the compared conditions. These conditions included rheumatoid arthritis, sclerosis, lung cancer, type II diabetes and chronic renal failure amongst others.

Living with such substandard quality of life will naturally have an impact on the mental health of patients.

A recent report published by Action for ME stated that 51% of respondents have felt suicidal as a result of living with ME/CFS.

That is an astonishing figure and yet the disease is given very little funding and the support network – in particular in Ireland is almost non-existent.

The unfortunate reality is that if you have ME/CFS in Ireland, the chances are you’ll be misdiagnosed with depression, advised that your blood work “looks fine” and sent on your way until you can muster up the energy to go back to your GP to fight your case.

If you are relying on the HSE you could be waiting an egregious amount of time before finally landing at the office of someone who knows just enough to put you on the right path.

Gaining a diagnosis and beyond

With limited statistics in Ireland on ME/CFS, we are forced to look abroad to the UK and the US for figures. According to the US Centre of Disease Control and Prevention (CDC), only 20% of people with ME/CFS are actually diagnosed.

I suspect that figure is significantly lower here in Ireland.

This is largely due to two things; the first is that at present there’s no available biomarker for ME/CFS (although present studies will hopefully change that). That means ME/CFS is only diagnosed when all other possibilities are eliminated. This can take anything from six months to six years.

In most cases, no diagnosis is ever reached at all, leaving the patient stuck in limbo with more questions than answers.

Secondly – unlike the UK – Ireland has no dedicated centres for patients with ME/CFS. There is no streamlined process to gain a diagnosis, which is crucial especially in the early stages of the illness.

Without a formal diagnosis, it’s extremely difficult to get financial support from the State. Some patients may be able to cling on to a part-time job but for many more the prospect of maintaining a job is simply not possible.

Is it really acceptable that in 2016 we have a situation where people who are chronically ill for long periods of time have no support framework and very often will receive no financial assistance from the State?

We need to change the system

A few years into my illness, my GP was lost for ideas and I was in search of answers.

He referred me to the medical assessment unit in a local hospital in an attempt to help me. At the time, I was so exhausted I was collapsing on a regular basis. I remember feeling empty and completely hopeless.

Upon arriving, I was given a bed and blood was drawn for a series of tests. The doctor assured me that if anything was wrong with me, they would find out and set me on a path back to good health again.

In the face of his confidence, I felt cautiously optimistic. Optimism was a sensation I had not felt in a long time. My stay passed slowly and eventually the doctor returned to inform me that all tests were fine. Despondency was knocking on my doors yet again.

I implored with him that I did not feel fine and that something was wrong with me. Something very serious. His words? “You’ll just have to get on with it”.

I’ll never forget those words, because after years of trying to find answers not even a medical professional could muster up the energy to empathise with me.

I couldn’t just “get on with it”. I was ill. Very ill. He just didn’t want to hear.

Suicide became a real option for me. I often felt it was the only option. I was angry, confused and hurt that I had given my trust to this doctor and he, like so many before him, had trivialised my struggle.

Where I needed empathy, I received apathy.

My years of suffering were irrelevant and I was just another face to walk in and out of his doors that day. I don’t want anyone else in this country to ever go through that. We need a complete overhaul of the system. When looking at the prevalence of ME/CFS the UK and the US, we get estimates of 0.3% – 0.6% of the population with the disease.

Based on these figures, we can estimate between 13,500 – 27,000 people in Ireland have ME/CFS. Whether you follow conservative estimates or the upper figures, we are still left with a situation where thousands of people in this state have no treatment, no cure and little to no support.

A dedicated clinic

If we want to address this – we need to talk about a dedicated ME/CFS clinic.

A clinic that can ensure patients are diagnosed quickly and efficiently. While at present there’s no cure for the disease and therapies used elsewhere like Graded Exercise Therapy can sometimes cause more harm than good, we can at least improve the process of gaining a diagnosis.

Such a clinic will also make it easier to assist us from a mental health perspective.

It is very difficult for a counsellor who is not familiar with the disease to truly help a patient.

Mental health support is critically important given the high rates of suicidal ideation from ME/CFS patients.

A dedicated clinic in liaison with Irish universities could and should be at the forefront of clinical studies. Such a clinic that could work on the cutting edge of science to help finally crack the puzzle of this disease and give us a real opportunity to reclaim our lives.

Given that research into ME/CFS is severely underfunded globally, we need to do something drastic if we wish to develop treatment for it. It’s time to invest in us. We deserve better.

Seán O Briain is a 33-year-old male with ME/CFS living in Waterford City. A graduate of WIT with a Bsc. (Honours) in Multimedia Applications Development, he can be found on Twitter @seanobriain

This article was originally published on 6 June 2016

About the author:

Sean O Briain

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