Struggle for recognition

“Being diagnosed with ME completely changed my life,” says 27-year-old Helen Discombe in an interview with Sonia Kapur.


It is estimated that about 250,000 people in Britain are affected by Myalgic Encephalomyelitis, (ME) and yet most people have never heard of the condition and do not know what it is.

The condition, which has caused a degree of controversy about its recognition as an actual illness, has a number of associated names: Chronic Fatigue Syndrome (CFS) Post Viral Fatigue Syndrome (PVFS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) all refer to the same condition that can affect both men and women at any age.

But how do you get ME and how do you even know you have got it?

It took Helen Discombe four months to get confirmation that she was suffering from ME – the condition which has completely changed her life.

“Towards the end of August 2006, I was suffering from what I believed to be a cold,” says the 27 year-old from St Chad’s Road in Cox Green.

“I noticed the symptoms get progressively worse over a period of time. My body began to ache all over and my energy was decreasing too. I started sleeping whenever I wasn’t at work. Thinking that this may be more than a cold, I went to see my GP who prescribed me with some antibiotics, but these didn’t seem to do anything to help.

“Soon I was unable to keep up with a full working week and found myself calling in sick on Fridays and soon on Thursdays too. During these days off I would do little other than sleep, only to return to work the following Monday.

“All of my energy was focused on getting through as much of the working week as possible to the point where my boyfriend would drive from his job in Cambridge a few evenings a week so that he could take care of my laundry and ensure I was getting at least a few good homecooked meals.”

Helen’s health did not get any better and her GP signed her off work in September 2006 with suspected Post Viral Fatigue Syndrome.

She had never heard of the illness and was not really told in depth what the condition meant. She says: “I just believed that I had had a virus that had significantly weakened my body, and that I would just need to rest and it would pass.

“But I found I was unable to move around easily alone and I needed help with many aspects of personal care. I was pretty much bed-bound and the only times I really left the house was to attend GP appointments.”

While Helen, who moved to Cox Green from Devon three years ago, was off work she was prescribed with stronger and stronger antibiotics that did not seem to make any difference to her condition.

Then after a series of blood tests, x-rays and consultations, the girl who loved to go hiking, was officially diagnosed with ME on December 27, 2006.

However, Helen still had no idea what the condition really was, and continued to think that she just needed to rest and would recover. Following the diagnosis, the fraud advisor returned to work in Maidenhead on a parttime basis.

But even working parttime was a struggle. She said: “I would struggle to work even through four hours, and felt like someone had filled my head with cotton wool.

“At home, I needed help to climb the stairs and just ate and slept. I was aware that people around me didn’t believe me and thought that I was just being lazy or that I was making it up. No one knew what it was really like as they hadn’t seen me crawl up the stairs or seen me so dizzy that I had to lean on the walls to get to the toilet or anything like that.”

Helen’s employer increased her hours at work, and although she managed to keep up for a short while, she eventually had a relapse.

The career-minded girl felt like a failure and could not understand why her body was letting her down. With all these questions in her head, Helen thought it was about time to take matters into her own hands. She says: “A friend emailed me a link to a web page that gave some information about ME.

"When I read the information, I was devastated, particularly when I read that I may never fully recover.”

Helen, who used to be physically active and enjoyed clubbing and was a member of the Territorial Army, could not imagine what life would be like without going to work.

But her worst nightmare was soon to become a reality and she, along with her team, was made redundant.

Although she had been off sick, she had still been employed up to this point. She says: “I had never been unemployed before and didn’t think anyone else would want to employ me with my condition.

“Not working through choice is one thing – at least you have the option – but not working because you can’t is very hard. I had to go and claim incapacity benefit and I hated it. I felt like a ‘sponger’ and there were people that I knew who treated me as such. My grandmother still says that it is all in my head.”

But the redundancy turned out to be a blessing in disguise and instead of reaching a point where she could not get up, Helen started to focus on what little energy she did have as well as learning about the condition.

She enrolled herself on the Expert Patient Programme, which taught her about fatigue management  and how to use the little energy that she had effectively. She also saw a counsellor, who helped her to grieve the old Helen that had long gone.

“I became interested in gardening with help from my boyfriend. I now love to cook, (although I need help with chopping as my fingers hurt when I grasp things) and I have learned to enjoy relaxing and watching the world go by.”

After a hard battle, Helen has been working part-time for four months as a financial services administrator for SFIA in Twyford. “The attitudes that people have towards me are different now,” says Helen,“because I understand what is wrong with me. I can help others understand it too. I believe that many of the prejudices towards ME come from a lack of knowledge and understanding.

“I have accepted that I may never fully recover. There are times when I wish I could go out with my friends more often or for longer and I miss going out for a ride on my bike or a long walk on a nice day.

“But my boyfriend takes me out in the car with the windows down or I go for a short stroll somewhere. In many ways I think ME was given to me to make me appreciate life more and to make me have more ‘me’ time.”

It has been nearly two years since Helen first started to get the symptoms of ME. And although her life will never go back to what it was and she does not think she will ever have children, she is happy in her Cox Green home with her boyfriend Andrew Birch, who is 30 and works as a web researcher in Reading.


•The ME Association will meet with MP Theresa May on Friday July 11, at St Marys Church Hall, Station Road, Twyford, 11-12.30pm. They will voice concerns about the lack of services in the area for ME sufferes.

To join the ME Association's support group and attend the meeting, contact Eileen Shoosmith on 0118 9786480 or readingmegroup@yahoo.co.uk