Chronic fatigue syndrome: an invisible and untreatable illness

When Orla Ní Chomhraí was just 23, her life was thrown into turmoil by debilitating exhaustion. Unable to concentrate and struggling to even hold conversations, she sought medical help.

Almost 20 years later, Ní Chomhraí (42) still suffers with the symptoms of chronic fatigue syndrome (CFS). Also known as myalgic encephalomyelitis (ME), the untreatable condition has changed her life. Within six weeks of her symptoms developing, she was diagnosed with the illness. The illness is so debilitating that she often has to use a mobility scooter outside her house.

Ní Chomhraí’s story began when she contracted an infection in the summer of 1998. While the infection went away, the chronic fatigue did not. At the time, she hoped she would recover within a few weeks. Today, she says, she has had to learn to come to terms with her condition.

“It has affected my life hugely,” Ní Chomhraí says. “I haven’t been able to work. I’m very interested in history and I have a degree in it, but I can’t read very much now. I’m not able for it.”

After being diagnosed with ME, Ní Chomhraí had to make “major adjustments” to her life. “I used to walk a lot, so I had to drop that. I use a mobility scooter now a lot of the time if I go out of the house as I can’t stand for prolonged periods of time. Things like hobbies can be a bit of an issue, because I can’t even really make any definite arrangements. I make tentative arrangements that I might have to cancel.

“I probably won’t ever have children. I probably would have had children if I had been well. Career-wise, I would love to go back to history, but I don’t know if I’ll ever recover at this stage.”

An invisible illness

This is what it’s like to live with a disease that medical professionals know so little about. While researchers have not yet discovered what causes the illness, some now believe that it comes from viral infections.

Research into the condition has been hindered by earlier attempts to identify the symptoms as psychiatric rather than physical

William Weir, a retired specialist from the UK, has run clinics in London and Belfast for sufferers of infections, and has worked extensively with sufferers of ME.

“I started off as an infectious disease specialist, which included tropical medicines,” he says. “It was during the course of that work that I started to come across a lot of people with ME, and these were people who had had a serious infection at one time or another.

“For example, I would see students who would have gone off in their early 20s to do voluntary work overseas, often in an African country, and come back with malaria. Having been fit and well as students, their health wasn’t an issue at all. When they came back with malaria, or sometimes another infection of some kind, we would treat the infection, and they wouldn’t get better. The acute symptoms were clear, but they would simply not recover their health and wellbeing afterwards.

“Something was happening to these people. Something else was being triggered. I began to see much more of this and my interest became known and people started being referred to me. At the same time, there was a considerable dichotomy of views as to what the actual cause was. I have always been convinced that an organic causation was the likeliest explanation.”

People with this condition were often faced with GPs and other doctors who kept regurgitating that this was a psychiatric condition

According to Dr Weir research into the condition has been hindered by earlier attempts to identify the symptoms as psychiatric rather than physical.

“Psychiatrists have claimed this in their territory, and really generated a doctrine where they said that all of these symptoms that people had been suffering from were basically imaginary, and were due to an abnormal illness belief. They felt that the way ahead was to treat these people with cognitive behavioural therapy [CBT] and exercise, and that they would get better.

“The psychiatrists felt that they had a handle on this, and they knew the cause, and the doctrine that they promulgated became very widespread in the medical establishment. This meant that people with this condition were often faced with GPs and other doctors who kept regurgitating that this was a psychiatric condition, and all you need is some CBT and you’ll get better.”

Migraine attacks

The attempt to understand ME as a psychiatric condition is mirrored in Patrise O’Hanlon’s experience. The 36-year-old first started experiencing symptoms of ME in June 2015, after having severe acute migraine attacks after a two-week holiday abroad.

My symptoms got so bad that I was using a walking stick and literally running on empty

“It took the doctors a couple of weeks to diagnose that I was having acute migraine attacks, and after that, I never recovered really,” she says.

O’Hanlon, a nurse who formerly worked with adults with learning disabilities, was forced to leave her job in July 2015, although she still had not been diagnosed with the illness.

“It just developed on to pain all over, and just this extreme tiredness,” she says. “It didn’t matter what I did, whether it was driving or work or anything, I had no energy. I would struggle even with housework at times, and I would struggle getting out of bed. I have chronic insomnia, and I never had problems sleeping in my life until I got this. I kept getting flu-like symptoms, so I was getting what you would call the flu two or three times a month. My glands were very swollen as well. I suppose all of that led onto me getting a diagnosis in November 2015 of chronic fatigue.”

Life changing

O’Hanlon was diagnosed by a psychiatrist, who was called in by the doctor who was treating her for migraines in hospital. After the diagnosis was made, she was sent back to her GP.

As there is no treatment for chronic fatigue, her GP recommended that she buy a book and read up on the illness. After that, she was sent home with her life radically changed, with no way out of a condition that left her constantly exhausted.

Today, O’Hanlon’s quality of life has been hit hugely by the illness, which has not eased off in the almost two years since she first became unwell.

“I did attempt to go back to work last September. I lasted a total of seven days and I went into a big relapse,” says O’Hanlon. “My symptoms got so bad that I was using a walking stick and literally running on empty. I ended up in a psychiatric hospital in Dublin because I saw a psychiatrist, and she didn’t know where to go with it. She said, ‘look, you need a rest’, and I did. I was physically and mentally at a very low stage. I spent the seven weeks fighting with my doctor. She was extremely dismissive of my symptoms, so it came to the point where I discharged myself.

The depression that people get with chronic fatigue is probably due to their chronic fatigue, and not the other way around

“Since I came out, I’ve seen another doctor who has a lot more understanding and would be very familiar with ME and he has been brilliant.”

The transformation of her life has been very difficult, O’Hanlon says. “I think I’m just coming to terms with it now. I’ve literally gone from being fit, full of energy, looking really well, to being very unwell and having a lot of weight gain. It’s been extremely difficult to live with.”

John Fleetwood, a GP at the Carysfort Clinic in Blackrock, Co Dublin, says that diagnosing chronic fatigue in a patient can be difficult. “It really is a diagnosis of exclusion. You must rule out other diseases first before you get to chronic fatigue.”

Dr Fleetwood says that the challenge is in ensuring that the patient is not suffering from something else with similar symptoms, such as depression, which shares symptoms with ME.

Psychological problems

“The problem is that you can get chronic fatigue in people who have psychological problems, and sometimes it’s difficult to sort out one from the other,” says Dr Fleetwood. “I do know GPs who look on chronic fatigue merely as a psychological problem, which is very unfair.

“The depression that people get with chronic fatigue is probably due to their chronic fatigue, and not the other way around. They haven’t got chronic fatigue because they’re depressed. Quite often, people will go and see doctors who just tell them there’s nothing wrong and to get on with life.

“The other thing about chronic fatigue is that there’s no treatment,” he says. “You should run away from a doctor who says that he has a treatment. It probably burns itself out in the majority of people after some time, but it can last six weeks up to years.

“A member of my own family had it for five years, and it just suddenly stopped in a matter of days. A lot of people look on very bad chronic fatigue as psychological, when it’s not.”

While Dr Fleetwood agrees with Dr Weir that chronic fatigue likely develops out of viral infections, he recommends that patients be careful of the professionals they deal with. He says anybody who claims to understand where ME comes from, and how to treat it, is not to be trusted, as the research is simply far from concluding.

Among those researching the illness is Catherine Comiskey, head of the school of nursing and midwifery at Trinity College Dublin. She and anthropologist Fiona Larkan, also of TCD, performed a qualitative survey of 211 Irish people suffering from chronic fatigue.

Huge deterioration

“The 211 people we surveyed had a clinical diagnosis,” explains Comiskey. “We asked them about the time to their diagnosis and the services they had accessed. We found that there was a huge deterioration in their quality of life, their physical health, psychological and social, overall a huge impact, and that was statistically proven. There was a statistical difference in all aspects of their quality of life, before and after diagnosis.

“We didn’t do a prevalence study, but I would imagine there must be far more people with this that don’t even know they have it. It’s a very hidden, underestimated illness.”

The “hidden” aspect of the illness will be represented in a protest taking place outside Leinster House on May 11th as a part of the “Millions Missing” campaign.

“The protest will mainly be one of pairs of shoes to represent all the sick ME patients too ill to attend,” explains Camilla Cruise, an organiser with the protest. Cruise suffers from ME and wants to shine a light on the people who cannot get out of the house, because their illness is too debilitating.

The protest, which takes place the day before international ME Awareness Day on May 12th, aims to encourage the Government and the public to pay more attention to a cohort of people who are not just housebound, but often bedbound by an insidious illness that has no clear cause – and no clear solution.