Personal Stories of Parents/Carers of ME Sufferers

Follow the links below to read the personal stories of the parents and carers of ME sufferers. Please add your story - visit the Your Story page.

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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.

..... read more


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? ..... read more

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. .…..... read more

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..... read more

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…..... read more


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...... read more


The ME charities are campaigning for early diagnosis for this year's ME Awareness week.  Is this an issue?  This is our story which tells how late diagnosis caused us additional problems.... read more


Samantha's story is all too typical of the failings of the medical and educational professions to diagnose and support young people with ME. Samantha our only child was born after 18 years of childlessness and was our dream come true .We were aged 40.... read more

Suzy    Suzy's ME came on particularly fast and severely.  

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.... read more

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. ..... read more

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..... read more

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...... read more