I have suffered from Chronic Fatigue Syndrome (CFS) for two years this month. If anyone had told me that overnight I would go from a highly active, outgoing, hardworking person to being bedbound and too weak to make it out of bed for weeks at a time — without being affected by a traumatic event or illness — I wouldn’t have believed them. But it is true: I am proof of it.
Before I got ill I was working full time in a busy local government IT department. I would pull long hours during the week and work occasional weekends. The pressure was high, but I loved it. As well as this, I chaired the local branch of a bereavement support charity, regularly went to watch my local football team, went to the gym, socialised, had a happy relationship, and, being a mum, did all the mum things.
Me on a good day Jill Stratton
Then, virtually overnight, this all stopped. I caught a heavy cold which slowed me down and suddenly ground to a total halt. I was unable to get out of bed other than to crawl to the toilet. My body just wouldn’t comply. The effort to stand up was immense and often took several attempts. Once I was standing I felt dizzy and like I was made of jelly, and would have to sit down again rapidly before passing out.
“I have spent two years desperately searching for a way to get back even 50 per cent of the person I was before”
I couldn’t bear any lights or noise; speaking on the phone was intolerable; my whole body was in weak and in pain so that even holding a fork would hurt my wrists. I found it hard to hold a conversation and be around people. My vision became blurry and I developed tinnitus.
I still battle most of these symptoms daily, but have learnt to accept them and live with them. I have lost my independence and dignity. I have gone from someone constantly on the go to someone who can no longer cook for themselves, do housework, go out of the house for any period of time, or spend time with friends. I even struggle to shower daily due to the exhaustion it causes. I am reliant on my family to care for me, and am not able to a proper mum to my daughter.
Yet I also realise how lucky I am. My symptoms have, by and large, stabilised, and on most days I am now able to venture out of bed to my living room. This is very exciting as it means a change of view and I can interact with my parents. There are many sufferers I have encountered whose symptoms we more severe than this. Still, I would give anything to be “normal” again. I have spent two years desperately searching for a way to get back even 50 per cent of the person I was before.
Me on a bad day Jill Stratton
Despite all this, the causes and nature of CFS remain a mystery. They baffle not only us sufferers but the medical world too. So I was excited to hear that Oxford University had undertaken a 2 year study into CFS, and was looking forward to seeing the results. But having just seen the headlines, my heart is once again sinking with the feeling of “here we go again.”
You see, because CFS is not properly understood, there are legions of people out there who will tell you that we are making everything up. They’ll say it’s all in our heads, all a delusion; that we could get better any time if we just got our minds right. These people will seize upon the study’s conclusion that CFS is “not a chronic illness” and that sufferers “can overcome symptoms by increasing exercise and thinking positively.”
“I would love to video myself and let them actually see the world through my eyes”
That might be true for some people, but not for me. I attend sessions at my local Chronic Fatigue unit tp undergo both treatments used in the research, and have seen very limited results over the last 12 months. It is incredibly frustrating to be told over and over by therapists that that best way to recover is to be up and moving about. If only we could!
The study states that the findings are important “because many CFS sufferers believe that exercise will make their symptoms worse”. What they don’t witness is the aftermath of the activity. The more I do, the harder the next few days become, where even moving out of bed to the bathroom is nigh-on impossible. But trying to explain that to them falls on deaf ears. I would love to video myself and let them actually see the world through my eyes.
Yes, I am out of condition and my stamina needs to improve, but the other symptoms aren’t helped by activity. In fact, even the slightest activity can make things far worse. It is not just fatigue that we suffer: I also have a whole host of other symptoms which include, dizziness, sickness, pains in my joints and whole body, sleep disruption, memory problems, co-ordination problems and light and noise sensitivities.
This is a photo I took to celebrate making it downstairs for the first time in three months. I’ve had to close the curtains and wear sunglasses so I can tolerate the light! Jill Stratton
This research feels like once again we are being led up the garden path, our suffering being belittled and dismissed as psychological, and once again we face an uphill battle to convince everyone that what we are experiencing is genuine. Professor Michael Sharpe talks about the “vocal minority” who feel like they are being dismissed. Well, yes, I do feel like that, and I think it’s important to keep being vocal until we have proper answers. I can’t imagine sufferers of any other illness being treated like this
There is much talk about the effectiveness of CBT and GET in the CFS community, and I wouldn’t want to dismiss it out of hand. It does help to cope with living with CFS, and it can help those of us who are able to partake in activity to build up strength. But I don’t believe it is the key to curing this illness.
“It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do,”
It seems that others are of the same belief. Just last week David Tuller, a journalist and public health expert, published a critical commentary of a trial which is known as the PACE trial, which was published in 2011, conducted by behavioural psychologist Trudie Sandler and psychiatrist Michael Sharpe. Like the new Oxford University trial, this also centred on using GET and CBT therapies as a cure for CFS. Tuller’s analysis questionswhether the research is valid at all.
Meanwhile, although UK research seems to centre around psychological therapies, Norway is currently conducting a phase 2 clinical trial where CFS patients are being treated with a chemotherapy drug, which is showing positive results. Over 60 per cent of patients have shown improvement or recovery. This is causing some excitement in the CFS community. It speaks volumes about how debilitating this illness is when others like myself are getting excited about potentially facing chemotherapy.
In the meantime, all we CFS sufferers can do is continue to battle daily to fulfil even the most basic functions, keep our fingers crossed, and hope that, one day, scientists might be able to shed some light on what has made us ill and how to fix us.
Jill Stratton blogs about books here and tweets @JillStratton