Person with ME


It started in 1987 when I was 32 years old and had recently taken up residence in Greece with my new husband.

I came down with a particularly nasty bout of flu which was immediately followed by a persistent gastrointestinal problem. Overwhelming fatigue, muscle and joint pains were still present 6 months later.

Previously, in the UK I had been a successful Marketing Executive of a computer software house. At the time I became ill, I had given up that career to set up a restaurant on a Greek Island with my then husband. The fatigue and muscle pain with a myriad of other symptoms worsened and it became increasingly difficult to fulfil my role as Restaurant Manager.

For each particular symptom I saw a different specialist (as was the practice in Greece at the time). Each found nothing physically wrong with me.

Finally, one doctor concluded that I was simply homesick for the UK. My husband believed him, doubted my commitment, considered my illness imaginary, my marriage fell apart and eventually, I returned to the UK with my son.
I then started on another medical treadmill that lasted over 2 years.

I went to my GP in the UK. He took the view that I was depressed as a consequence of my failed marriage. He prescribed antidepressants which I refused. I didn't know what was wrong with me but I knew I wasn't depressed.

My family called the doctor to the house on one occasion after I had become too weak to walk or talk and couldn't make the bathroom without assistance.

The GP advised me to go out for a jog in the sunshine.

As luck would have it a neighbour stumbled upon a book on Myalgic Encephalomyelitis in the local library. She read a couple of chapters and found striking similarities in the symptoms it outlined and my symptoms, so she brought it for me to read. It was the first time I had ever heard of ME. At the time I had been mainly bed-ridden for 6 months.

I read the list of symptoms on the inside cover and wept, partly with relief that I wasn't going mad after all. I read the book and contacted the ME association, whose address was at the back. They offered an information pack for GP's but it had to be at the direct request of the GP.

I set about writing a letter to my GP, told him about the book, expressing my concerns that I may have the disease. I asked him to send for an information pack that would assist him in making a proper diagnosis.
He didn't respond.

I went to see him. He refused to acknowledge that ME was anything other than hysteria. He said my letter raised in him concerns for my mental wellbeing and suggested a psychiatric referral. I refused. I did agree to see a Consultant who turned out to specialise in chest complaints.
He told me that I couldn't possibly have ME because I had no muscle wasting!

Eventually, I managed to track down a Consultant Immunologist who was working with ME patients just outside my area. I contacted him by telephone and asked him if he would see me privately. He explained that it would be far too costly for me to go to him privately because the 'treatment' was likely to be protracted. He was trying a program of desensitisation, injecting allergens to stimulate the immunity. Each injection cost a small fortune.

I had to go back to my GP to ask for a referral. He reluctantly agreed to refer me.

I waited 11 months to see the consultant immunologist. During this waiting period my son reached an age where I was no longer entitled to income support, I was forced to visit my GP to ask to be officially certified sick, so that I could continue to claim financial aid as I was unfit to return to work.

I could not walk without assistance at the time and had to lay across two chairs in the doctor's waiting room because the walk to his surgery had thoroughly exhausted me.

He asked "can you lick stamps?" I had to accept that I probably could and on that basis he refused to certify me sick.

I left his surgery in floods of tears. I decided to change my GP. The doctor at the new practice quizzed me as to why I was leaving my previous doctor. He was very confrontational.
He had no hesitation in telling me that he did not believe in ME and warned me that he would not be prepared to prescribe expensive supplements (then evening primrose oil was being recommended, along with magnesium).

I never went back to him or any GP for some time. I tried to obtain disability living allowance. A female doctor came to the house, I was having a 'good day'. She asked lots of questions about how far I could walk, whether I could cook/ shop/ clean / wash for myself. I tried to explain that the symptoms varied in severity from day to day, even hour to hour... I might accomplish 2 or 3 tasks one morning and be exhausted for two days following. So that, yes I could cook for myself today and possibly walk to the end of the street but that I would pay for it with pain and exhaustion in the following days.

I was turned down for disability living allowance.

Finally, almost 3 years from falling ill, I saw the consultant immunologist who was to change my life. He diagnosed ME, certified me sick, prescribed supporting vitamins and supplements, gave me nutritional advice and started me on a desensitisation program.

Slowly I began to improve.

In 1996 (9 years after falling ill) after doing a part time degree in Law, I qualified as a Criminal Barrister and moved to London. ME never completely went away. It began to follow a pattern of remission and relapse.

The relapses following hot on the heels of stressful episodes - and in my line of work, there were many. However, I did finally find a very supportive doctor and that made an enormous difference to my life. I tried to reduce the stress in my life by taking a law lecturer's post and reducing my practice at the Bar to part-time. The relapses became shorter and less severe and the remissions longer.

Unfortunately, I had to have an operation 3 years ago and that brought on a major relapse, complicated by shingles. This was a considerable set back and I never became well enough to return to work.

18 months ago I decided to take early retirement and move to France for a quieter, more stress-free life. ME is still with me but I'm managing it. I'm still learning about to recognise when I've done enough and stop before I go too far. And I'm now facing a new challenge - trying to get my French doctors to understand ME.