Personal Stories of People with ME
Follow the links below (click on the circle above each story) to read the personal stories of ME sufferers.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS. I finally lost patience with the NHS and I was forced to see a private holistic doctor who has listened to me and helped me make some improvements. I feel so badly let down by the NHS which is wedded to the idea that ME/CFS is a psychosocial illness when 4,000 research papers show that there is a physiological basis to ME/CFS."
" I have attempted to put forward ME as a possible cause for these low levels but, basically, the docs don't want to know. For them, there has to be a 'real illness' for my test results. However, because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause. So, for now, the docs just say they don't know what's wrong. One doc went so far as to say "You have a syndrome we don't understand."
From our November 2009 newsletter -
misdiagnosis and missed diagnoses are the end products of a system which
has failed to tackle this illness.
This story from Christine Wrightson is testament to the failings of a
generation of policy-based evidence making from the UK government and the
UK Medical Research Council.
"I am left not knowing who to trust or believe and I feel as if the NHS has mentally and physically abused me. The worst thing about it was knowing what was wrong with me, knowing what medication I needed and having to put up the fight of my life when I was so ill to get it.".
"What filled me with resentment and embarrassment was that my father and in turn many of his close friends and colleagues were in positions in which they could have propelled ME/CFS forward into main stream medicine and greater acceptance. The way he treated of me was merely an act upon one person -- his denial that ME/CFS was real and his refusal to help get understanding of the illness and increased ME/CFS research into main stream medicine was an act of medical irresponsibility inflicted upon all people who have ME/CFS. That is what I could never forgive him for."
"I have since been sent to another neurologist after my doctor found I was Rhomberg's positive, who made me walk, did a scratch test on my feet, checked the weakness in my legs, and said quite rudely, "you have ME, I am not going to waste time doing tests on you" and that was it. I walked away feeling like I had wasted this man's time."
"When the physios assured her that I was doing my best but that if I did indeed have M.E. (and that) this intense physio would not help but worsen the symptoms, the neurologist immediately referred me to a psychologist, as she also believed M.E. is a mental illness. She told me she would only allow me to go home if the psychologist gave me the all clear."
"I would say that the M.E started off quite moderately. I suffered with feeling as I had with the Glandular Fever, only with worsening symptoms! Now at 35 I'm 99% bedridden, I am paralysed down the right hand side and in both legs. I am incontinent and have a supapubic catheter fitted through my stomach into my bladder.................."
"All that is available for me in the way of 'treatment' is CBT and GET. Even though, I relapsed very badly on an aggressive GET programme. In spite of WHO classification of ME as physical condition - it's a neurological illness not a psychiatric condition - and despite the excellent Canadian Guidelines published last year, it is impossible to find a consultant within the NHS with a biomedical approach to this illness."
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal. She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because I was straining the section as they had to cover for my absence"
"After the examination he said that my MRI scan was clear, therefore there was nothing he could find wrong with me. He said that I should go back to work! I mentioned the possibility of it being M.E. but he said that he knew nothing about it. That was the end of the consultation, and I was discharged from his care."
"After hearing my story, viewing my countless blood tests, x-rays, internal examinations and MRI results and a thorough examination, the neurologist immediately suspected that I was suffering from ME. He asked me to look up the internet and check if all my symptoms were recorded on an ME patient's list of complaints. Suddenly everything started to make sense and the relief was priceless. A visit to a sensitive and patient physician, confirmed the neurologist's diagnosis."
"We arrived at the doctors and the female doctor refused to see me, saying I was not her patient, and she wasn't prepared to see me. I was just in a state of shock and my partner was furious. The Doctor in question didn't come out to the waiting room to see me, instead wrote a prescription for three months of anti-depressants "
"Despite strenuous efforts on my part to keep well and fulfil my duties to the best of my capabilities, I suffered a complete collapse in September, 2003 and was almost bed-bound for many months. I have been unable to work full-time since then and even very small, part-time jobs cause the flu-symptoms, severe headaches, blackouts, loss of balance, nausea, weak limbs, IBS, brain-fog and exhaustion to start up again. I'm one of the lucky ones. "
"The months passed still unwell, unable to work and I was made redundant from my job, I took them to court for unfair dismissal and won my case. The stress set me back and combined with battling doctors for more tests and trying to convince them I was not depressed but ill was even more distressing. You desperately want to get better, get back to work, to the life you had before, to socialise, to be able to read and cook and have conversations without your words getting all mixed up. To get through the day without collapsing on the sofa exhausted"
"How do I deal with family that say things like "stop researching that...don't you think your just wallowing in it just the more?" How do you stop looking for answers? When is it time to give up? Why don't people that have known you all their lives...know you and what your suffering is REAL?? Why do doctors still say this doesn't exist and yet look at many of us ...completely destroyed by this disease"
"When I try to get medical care, the strain of trying to convince someone I am ill and the hurtful things they say to me practically make me crack up. Just the physical demands of leaving the house, even in the wheelchair, are enough to make me sicker for weeks. I can't describe how ill it makes me."
" My GP thought I had ME but kept saying, work through it, do lots of exercise you'll get over it. They sent me to a sports centre to do a fitness course but I went once and never again. It was about this time I saw the psych and he said there was nothing mentally wrong that feeling well again wouldn't fix."
Lili collapsed after her last hospital visit. She passed out with a seizure, her body violently shook, and paralysis spread throughout her body. It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down.
She never recovered.
My beautiful daughter is totally bedbound.
" My daughter was severely affected for ten years. From the age of 8 until 18 , she is completely well and now a married woman of 31yrs of age , I knew we were lucky, her recovery a source of hope then , and now by those who know us. Those years were a nightmare, we were constantly under threat, we battled home tutors, school psychologist, threats by a paediatrician to take her from us and put her in a hospital with other non sick children! Three years ago I became ill, on Boxing Day 2007 and didn't leave my bed till March. I am haunted by my daughters past, that my child felt this pain and confusion torments me. "
"Ryan is often too weak to use a regular wheel chair. Insurance is denying the motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical supply company that originally had a work order *from* the insurance company to go to the home and fit a special chair. Why would that happen?"
Rose (from our Journal of IiME Volume 1 Issue 2)
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities. This included education, art therapy and visitors. Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
"He started to deteriorate from then and ended up in hospital for a few weeks, test after test and as usual everything came back clear. He was referred to a rheumatologist and she said he was fine and to send him to school. I was dismayed by this as me and my family could all see that David was a very physically ill little boy"
Annabel by Richard Senior
"Even if it had been the right treatment, by that time it was too late: so many years of neglect, disbelief, wrong medication, wrong diagnoses; so many times referred to psychiatrists, who to a man sent her away because they couldn’t find anything wrong – with a prescription for an anti-depressant just in case"
Birgitte by Leiv
"At this point in time Birgitte was able to sit in a wheel chair, could use the toilet and could move her arms and legs. However, she is put under conditions of extreme stress. Due to total lack of knowledge and competence of this illness the nurses and the nursing home doctor still think she has a psychiatric illness. The treatment manual from the Norwegian ME organisation is, therefore, not being used and the patient is getting more and more ill."
"This, from her parents, details how she became ill and how she has lived for the past three years. It's difficult to condense over three years of awful experiences and paperwork into a short account that can convey the magnitude and the seriousness of the situation concerning the illness ME, but we will try. Suzanne was a high achiever, academically and in sports"
Sophia by Criona Wilson
"The following story has been submitted to Invest in ME to inform those persons who have a significant interest in resolving ME-related matters as
to the alleged problems which can occur with a psychiatric-based approach to ME."
Carly by Sheila Barry
"A speech given by Shelia Barry at the launch of the book 'Skewed' by Martin J Walker. Sheila is an ordinary mother who's daughter suffered from ME for many years before taking her own life. Sheila has endeavoured to set up a register of suicides directly caused by ME and the devastating effects it has on people's lives. The number of suicides, suicidal attempts and serious self harm are high among people with ME, yet there are no official figures and little official or public recognition of the enormous impact ME has on peoples' lives."
Casey by Pat Fero
"Casey was diagnosed with CFS at age 9 and again at age 15. It caused him to feel weak, unable to think, and exhausted. He was plagued with headaches, stomach problems, and had major sleep disorder among a list of daily symptoms. Casey persevered and did not want people to know his condition. Early on, he knew that medical help was unavailable and furthermore, he was met with disbelief in the school and in the doctor’s office"