John, from Gloucestershire, aged 58
"I first had symptoms in early 1998 but not diagnosed. I had a heart attack later that year and had an angioplasty to rectify an artery blockage. After that my continuing fatigue problems were diagnosed as an underactive thyroid and I had an operation to remove part of my thyroid gland in 1999.
"My health at the time was so poor that the consultant gave me only a 50 per cent chance of surviving the operation. However it was worth the risk as I was only existing at the time and certainly not living. The thyroid gland had grown to the size of an apple in my chest and was actually pressing on my heart! Even with thyroxine treatment I was still very tired and no cause could be found. In my early 20s, I had suffered from a blood illness called micoplasma and now I think this may be the root cause of all of my problems.
"I was suspected to be suffering from sleep apnoea following seven years of exhausting and inconclusive tests for all sorts of conditions. Three months of using a CPAP machine (to assist my breathing at night) did not resolve my fatigue; in fact it made it worse.
"The respiratory system consultant marched me down to corridor to see another consultant (Dr Mick Byalis) who specialised in M.E. After a very thorough examination and discussion of my symptoms, Mick diagnosed M.E. – this was seven years after first experiencing the chronic fatigue. Sadly, Mick died a year later (he had terminal cancer), and his speciality has still not been replaced by the health trust, so M.E. sufferers in Gloucestershire have to rely on Frenchay hospital in Bristol for support.
"Over the years my M.E. has gone in unpredictable cycles – from having to rest continuously to being able to work full-time. Initially, I was unable to work at all and was off work for a total of 18 months. However, I recovered enough to hold down a full time job (office based IT Project Manager) for a number of years.
"From about two years ago, I had to work part-time on medical grounds (i.e. on full pay) as I was getting too exhausted, but then I had to reduce my hours permanently so I took a partial retirement two years ago. I usually had to rest for a few hours in the afternoon to recover from work in the morning.
"I am unable to walk more than about 50 yards due to fatigue and angina. I now use a mobility scooter to get around when out and also at work (it is in a very large building). I also have a power chair and another scooter to get out & about – quite a fleet!
"At worst, M.E. meant total exhaustion, inability to concentrate, depression, muscular aches that pain killers could not alleviate. I could not think straight, had short term memory loss – eg. forgetting who I was talking to whilst on the phone.
“Carrying an elephant whilst wearing an old-fashioned diving suit”
"...is a good description of how I felt! My life became purely mechanistic as I struggled to cope. I needed help so I attended Dr Hazel O’Dowd’s therapy sessions at Frenchay Hospital in Bristol. I found that the coping techniques Hazel & her team taught us to be very helpful – mainly pacing and setting a low baseline. I’d tried cognitive behaviour therapy (CBT) before, but didn’t find it of any use. Graded exercise therapy didn’t work either, as I have Ischaemic heart disease and a chronic spinal problem so can’t do much in the way of exercise.
"I found the Action for M.E. factsheets and guides extremely useful. They were the ones who provided details of Hazel’s therapy sessions – my GP did not know that these were available. The articles published in InterAction (the membership magazine) give me hope for the future.
"Nowadays, provided I take things slowly, I can enjoy visits to country house gardens and the countryside in general using my mobility scooter or a power chair. My main hobby is IT/computing – I’d be lost without the internet and email!
"Recently, I have not been very well at all and was struggling at work to maintain my concentration & stay awake. I have just been assessed by our Occupational Health Doctor and have been told that I am no longer considered fit for work. I am currently on sick leave while my employer determines the best way to dismiss me, either by early retirement or some other means. I found this news devastating as I had been a consistently good performer, even when struggling with my M.E. Still, at least I now have a life of leisure to look forward to, and can run my life at my own pace!
Let it out
"I would advise those just been diagnosed with M.E., first and foremost, to TELL PEOPLE! I always recommend the Action for M.E. website as the fount of all knowledge and it has helped me to help others who have had symptoms and get them diagnosed."