Personal Stories of ME Sufferers

Follow the links below to read the personal stories of ME sufferers.
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"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." more


"They didn’t know what to do with me so I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. " more

"So much more needs to be done in researching this illness, something caused it. I cannot believe the medical professionals are still doubting this condition when it’s a recognised neurological illness - NOT a psychotic illness!" more

"I am very weak and try to keep my cognitive dysfunction to a minimum by not doing anything assertive. This enables me to be part of my family and enjoy the day, even if it is from the confinements of the sofa." more

"I hope that in the near future doctors and specialists will learn more about M.E and maybe a diet or something to aid us! " more

"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. " more

"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health, but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. " more

"I have 'bad' days and 'better' days, but at the moment the bad days seem to be more frequent. The doctors and nurses do not wish to know, as in their eyes it is a made-up illness. " more

"Sadly the controversy surrounding ME/CFS and Lyme Disease causes many people not to be properly assessed to see if their ME/CFS could be an infection such as Lyme disease." more

"I am a nurse of 17 years which hasn't been able to work for over 4 years now. Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness. I haven't had relief of any symptoms for a very long time."
.... read more


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.". ..... read more

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." more

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." more

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.".....................     .... read more

Now, nearly eight years later, going from a student at the top of my class with an unlimited future to a dependent, rather helpless person with no real hope for healing is something that only others in this situation can understand.....................     .... read more

So now it looks like I will have this illness forever. It has taken some of my personality away but I fight each day to preserve the bit of me I still have....................     .... read more

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...................     .... read more

It's a continuous FIGHT with the disease, with the doctors (lack of interest or knowledge), with relatives (lack of understanding) and life itself. .......... .... read more

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. .............. .... read more

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..................     .... read more

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. .      .... . read more

A nurse friend told me it was very like something called Royal Free disease she had witnessed when she worked there. So I started to look into it and determined to rest now instead of "getting fit" as the doctors had been advising.      .... . read more

It would help if you had a supportive family who understood it but mine are not that kind of family. It is not a nice illness to have.     ..... read more

I am still waiting for a proper diagnosis as well as my doctor believes that I have ME and I have had lots and lots of blood tests, etc, but he has referred me to a specialist and I am still waiting for the appointment.     ..... read more

At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!     ..... read more


An experience of Graded Exercise Treatment for a person with ME.     ..... read more

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.     ..... read more

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     .... . read more

Who am I?      ..... read more

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.     ..... read more

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.   
..... read more

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
..... read more

I was subjected to a regime of the threat of physical torture, bullying, intimidation, scorn, derision, lies, deception, malice, and above all hatred. The stress and emotional torment induced in my mind was extreme beyond description...... read more

Just one disaster on top of another!  But it all started with the stupid TMJ..... read more

I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description....... read more

I remember asking my doctor one day when I would stop feeling so tired!!! ...... She said give it time,....... read more

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....... read more

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. ...... read more

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. ...... read more


At this time last year i was able to still care for my own needs butt as the summer progressed so did my illness...... read more


I was assessed for one ME clinic but they said I was too disabled and that there were other issues that needed to be worked on. They also said that because I was confined to a wheelchair they thought that would be too upsetting for the other members of their group...... read more


In 2004 when I was 24 I became acutely ill with the Epstein Barr virus and was admitted to hospital with severe anaemia and jaundice. I had become so ill but did not seek advice from my doctor because my fears of being disbelieved are still with me to this day. ...... read more


I was a happy normal child. I was 14, had friends, a happy home and a LIFE.
This, as I was about to find out, was all going to change.
..... read more


I fell ill with the flu the same time as Antony, my then boyfriend/fiancé. He got over it, I didn't.....

It was a struggle to get the illness recognised.... read more


Diagnosed with "very severe Myalgic Encephalomyelitis (ME) 80% disabled" after becoming profoundly ill in 1984, with what followed a "sever bout of flu".

Unable to move my legs, arms and hands.......... read more


Originally written for ME Awareness 2003 Judith's story tells of her experiences.

Since suffering with this illness I have reached an all time low in my life.
At 36, I was a happy-go-lucky Mum who was mad enough to try anything, go anywhere
read more


I had just turned 12 when I first started to feel ill. For months I assumed it was a succession of bug and viruses, Glandular fever was brought up as a possibility. It was only on looking back that I realised I wasn't "shaking this off"..... read more


Up until 1999 I had been a fit, active person. I enjoyed long distance cycling, hill walking, sailing, and skiing. I enjoyed a very active social life and a challenging job managing an oil refinery. I got a buzz out of living a full life and I did not prescribe to the notion that stress is bad for you; for me, a challenge was a good thing.... read more