From the Belfast Telegraph, 10 November 2015. Story by Kerry McKittrick.
After a psychiatrist sparked controversy by suggesting exercise and a positive attitude could help people recover from this chronic condition, two sufferers explain why it will take more than that.
It's commonly known as ME yet many people are still unsure what exactly Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is. With around 7,000 adults in Northern Ireland believed to be living with this debilitating condition, there is a need for greater awareness.
Recently, Oxford psychiatrist Professor Michael Sharpe caused controversy by suggesting a new report had revealed that more exercise and positive thinking could aid recovery for ME sufferers. Professor Sharpe's conclusion reignited a debate as to whether ME is a psychiatric condition or a physiological disease. The leading researcher insisted he views the condition as ”a real illness”.
It is believed, though, that much of the misunderstanding around ME is due in part to the difficulty in diagnosing the illness.
Although many believe the main symptom is simply tiredness, the list also includes muscle pain, concentration and memory problems, digestive problems and headaches. And the tiredness can manifest itself in exhaustion so extreme that sufferers are often bed ridden for days on end.
Getting an accurate diagnosis is further complicated as many other illnesses, from heart disease to dementia, must be ruled out first.
Many healthcare professionals including doctors and nurses have little understanding of ME.
In Northern Ireland, more that 60% of ME sufferers felt that their GP was poorly informed about the condition and nearly three quarters have not been seen at a specialist clinic for more than five years.
We talk to two local sufferers about ME and learn about their hopes for the future.
‘It’s been, very hard, I can’t plan or do anything without ending up in bed’
Amanda Mann (47) lives in Carrickfergus with husband Peter and their two children, Sarah (26) and Nathan (14). She says:
In 2010, I definitely wasn't well but I didn't know what it was. I was a care worker in the community then, and found I was forgetting simple things, like putting a bed rail up, or a catheter bag on, and these were tasks that I had always done automatically. I was also very fatigued which wasn't like me at all – I'd never had a day off sick from work and I loved what I did.
Then one day in January 2011, I went to work a double shift – over lunchtime hours and teatime hours – and I collapsed during each shift. That was the last time I was at work.
From that January, I was in bed for weeks unable to do anything for myself or my family. I tried to go back to work twice that year but only lasted five minutes each time.
I was eventually diagnosed with ME at the end of January 2011 – the doctors needed to rule out everything else before I could be diagnosed, so I had all sorts of scans and tests before being told that I have ME.
It's been very hard. I can't plan or do anything without ending up in bed and I'm in bed most days anyway. I feel that my 40s have just gone and I can't remember much about them. I now have a four year-old grand-daughter and I've never even pushed her pram let alone looked after her.
I do have great family support. My husband never complains. He works as a sales engineer during the day and then comes home and does all the things I haven't managed to do during the day. My daughter and mother-in-law are both very good at coming over to help, too. I recently did a six-week pain management programme at the City Hospital which I knew from the beginning wasn't a good thing for those with ME. I went to every session and even collapsed on one of my visits, I found it very hard but I will try anything if it might help. I tried to do the exercises which were prescribed but they made me feel even worse. Since that ended in September, I've felt as bad as I've ever done since I was diagnosed. This is a neurological illness not a mental illness so things like cognitive behavioural therapy and counselling don't help.
When I was diagnosed I was told by my consultant that this could leave me within weeks or it could stay with me for the rest of my life. All I can say is that I'm worse now than I have ever been and there's not a glimpse of anything that could help.
I don't feel I'm depressed but I am down because of the guilt I feel. I'm not a proper wife, I'm not a proper mum or a proper granny. I'm certainly not the person that I used to be. I'm not a negative person so I constantly try and tell myself that I will be well one day.
I sleep a lot. My husband puts the TV on but I don't really watch it. I used to be a big reader but now I'll re-read a line over and over but it won't go in because I don't have the concentration. Memory loss is part of the condition I have and I was scared at first that I had Alzheimer's.
I don't socialise at all now – people don't really understand ME, so people don't understand what has happened to me. They think that I'm just tired but it's not that, it's debilitating. I can't have a nap and feel rested. I'm now scared to even have a bath with no-one in the house in case I take ill.
ME Support Northern Ireland has been a lifeline to me, though. I found them just over a year ago. They know exactly what you're going through and what ME is about and are there if you just want to talk. To meet people who are in the same boat as you is great and really lifts my spirits for a couple of hours a month.”
‘I can't even do the simplest things like take a nice walk with my family'
Jim Wilson (44) is a sales person and lives in Belfast with his wife Lesley and children; Jessica (12), Evan (12) and Max (8). He says:
About six years ago, I got a bad dose of the flu – it was around the time that people were panicking about swine flu.
Like most people, I had the flu for a few days but I felt I was over the worst of it and decided to go back to work – at the time I was training people in sales while doing some project management. I was working long hours but I was always energetic and enjoyed what I did.
The day I went back to work I tried to pay for my fare using my Visa card instead of my bus pass – the bus driver told me I should go back to bed because I looked so bad.
I got to work but when I sat down at my desk I couldn't remember how to use my computer – I was told to go home an hour later because I just couldn't cope.
Then things started to escalate. I couldn't read bedtime stories to my kids because I couldn't process the words or concentrate on what I was reading.
I remember one day sitting in my mum's house with my wife – they were both talking to me but I felt like I was in a bubble – I could hardly hear them and I couldn't communicate back. At this stage I couldn't walk more than 100 metres, so going to the local shop became a huge effort.
I'd never heard of ME and thought I might have a brain tumour, so I went to the doctor.
Luckily enough I have a doctor who knows me and understood there was something wrong. She did all the tests she could and then a week later told me she thought it was ME. What scared my wife was that I returned home with a three month sick note – our doctor rarely gives out sick notes for anything, so that appeared quite extreme.
After months off work, I did go back but it was very difficult. People assumed I'd just felt a little tired and thought I could go straight back in. My job changed and I had to deal with sales calls, which I found difficult because I just don't have much concentration. I had to consult with occupational therapists and company doctors. I had to fill in lots of paperwork and explain that I wasn't up to doing shift work.
I've now gone down to four days a week – I work Monday, Tuesday, Thursday and Friday, finishing at six each day. I find I can work two days in a row and manage it, but three days in a row will produce a big aftershock.
I can be so tired I'll sleep for hours.
There have been times I've come home from work and slept from 2pm to 10am the next morning.
And then there are other times when I've been lucky to get two or three hours of sleep a night because I've been so tired and sore.
There are days when I feel great and I can go and do lots of things, but a couple of days after that the effects of the ME will kick in and I realise that I'm completely spent, so even when I do feel good, I have to reel myself in.
Once I've used up all my energy it can take a really long time to get it back – I can't just take a nap and wake up feeling refreshed.
The kids now ask me if it's a wrestling day – if it's a day when we can have fun and wrestle.
Max has grown up with me like this but I feel bad for Nathan as he can still remember me as I was before. My kids know what ME is now and they shouldn't have to.
I can't even do the simplest things with my family like take a nice walk on an autumn day. The last time that happened my wife had to get the car to come and get me because I had collapsed.
There are times – the beginning of last year was one – when I thought things were getting better. I could do light things in the gym again, but only two months later I was laid up again. Eating well and doing exercise should be beneficial, but for me it can have me off work for four months.
I will never accept that this has got the better of me – I'll do something at least once a month that I know will push me over my limit and leave me exhausted but I'll never give up trying. If I don't do that and allow the ME to take over then how will I know it's still there?”