Martin’s story
I was diagnosed with M.E in 1990 by a doctor in mid Wales.
Consultants
I have seen various Neurologists over the years I’ve been ill. I had to wait 3 years for my initial appointment with the Neurologist in Carmarthenshire. None of the Neurologists had any idea about or knowledge of M.E, despite it being a neurological condition.
I have seen a Rheumatologist about the pain I am in. He was rude and told me that I was imagining the pain! I have also been to a Pain Clinic as a one-off appointment. They wouldn’t treat my migraines because it would affect my M.E which I believe was good advice but I felt under pressure to go to the pain course at Bronllys, which I felt was inappropriate for me. After discussing it with the doctor further he eventually agreed with me that it would indeed be inappropriate.
Symptoms
My symptoms include leg pain and weakness, migraines and headaches, eye pain, noise and light sensitivity, insomnia, intolerance to many foods and medications, poor temperature control, poor cognitive function and short-term memory, feeling ill and toxic, fatigue and exhaustion, and low energy and stamina.
Effect on my life
ME pervades every area of my life. I never get a day off and have been ill, with a range of symptoms, for the past 25 years. People dismiss my condition and offer disbelief that it could be so bad for so long. I have been told by doctors that it’s now just “learned behaviour”.
I spend endless days in bed with continual migraines and feel totally isolated as social activities are beyond my abilities. I can’t use a computer or social media and find television too tiring and painful to watch, and reading impossible. There cannot be many illnesses so life-limiting. I find the pain in my legs to be the most challenging. Nothing seems to help which, in turn, prevents me from sleeping. I feel desperation and anxiety on a daily basis and long for some intervention that will help.
NHS & ME
My experience of NHS attitudes towards ME is wholly negative. In the 25 years I have had ME, I have yet to meet a GP who understands the condition or believes in it. I was in hospital in 2013 as an inpatient and the doctors and surgeon had never heard of M.E. The nurse prompted them with a gesture and a wink, suggestive of a mental health condition.
My GP calls it “that Chronic Fatigue thingy”. Having said that, my GP is supportive in areas with which she is familiar. She has tried me on different medications and referred me when I have asked for a referral.
Improvement in services is needed
Proper diagnosis is key. If someone with ME improves with Graded Exercise or CBT then that, in itself, proves that their diagnosis was incorrect.
The NHS could help by educating doctors, nurses and hospital staff about how debilitating the condition can be and not to encourage inappropriate treatment.
We need suitably trained specialist nurses on an outreach basis – many people are too ill to access doctors in clinic. Many times I have been made worse trying to attend appointments. People with M.E routinely are dismissed, as they “don’t look ill” – a very unhelpful statement.
I’d like to know how long the NHS feels it is reasonable for someone to wait for an appropriate level of care and help with a serious chronic condition? Until there is proper, scientific biomedical research into ME this question will remain.
back to: ME Stories
