Before becoming ill, I was extremely sporty. Initially, after not being able to rest when having a virus on a school trip at an adventure centre and made do all the activities and never recovering, I was only very mildly affected. This I put down to giving up sport because of the muscle problems I developed so for the early years, I was able to go to school and then college full-time although I had to make cut-backs in most other areas of my life and, as my brain didn't work as well, I struggled. Read on...

A parent's view - When my eldest daughter was finally diagnosed with ME (after 3 months of doubts and tests) we were given an appointment for what was planned to be the first of many CBT sessions. I took my daughter along and we listened and the woman stared taking notes of my daughter's history - where she was born, what she did, what she liked, what her grandmother's name was, her grandfather etc. and started saying that she was looking also for any trauma which might have occurred. I listened and kept reasonably quiet, as I wanted my daughter (then 13) to explain. Read on...

Firstly, It took 8 months to be diagnosed with ME/CFS. I was given counselling which I could barely attend and spent some of my sessions lying on the carpet of the psychologists floor. I had lots of blood tests etc. I was told that people with depression have high cortisol levels, that’s funny I said, I barely have any.

Anyway I had to attend just to get some sick pay from work. I was then reffered to Manchester and diagnosed with CFS, since then I have since I private doctor who says I have ME, not CFS, bloody confusing. Read on...

I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years. Read on...

I allowed myself to be referred to and treated by the psychiatric lobby for three years, their diagnosis being post traumatic stress disorder, despite the absence of any specific trauma-worthy inducing factors in my life.

Consultations with psychiatrists turned regularly into discussions about my medication, usually SSRI's and the fact that they failed to address my symptoms at any dose, indeed often making me feel worse, in fact over-prescription causing seratonin syndrome at one stage. Read on...

I am Flora, mum of Samantha aged almost 16 and poorly on and off since aged 6. It’s been horrendous with doctors saying, ‘pull yourself together’ ‘low pain threshold’ ‘school phobia’ etc. Read on...

Firstly, I had never heard of such an illness when I frist became ill in July 2004. In fact, I rarely became physically ill and so such illnesses were of little interest to me being a healthy person and busy finctioning at a full capacity.

I remember the morning well. I had, had a bad nights sleep and had been having night sweats for a few weeks, so bad that I had to get up in the night to change my clothes and bedding. This particular morning I felt as though I had been fighting off a flu or something, it was winter and I had, had my flu injection but being around a lot of students I thought I may have caught something. Read on...

In the early days of being ill (when it was originally thought that I was suffering from acute stress), I was advised by my GP to take longer and longer walks each day. This I faithfully did, until one day my legs gave way suddenly and completely, pitching me onto the roadside.

Fortunately, living "in the sticks", with rarely a car passing by on the tiny backroads, I wasn't involved in an accident. It took a good fifteen minutes or so for enough strength to return for me to be able to stumble to the nearby post office, where I was immediately offered a chair and a glass of water. It was a further twenty minutes or more before I was able to struggle home. Read on...

I am writing in behalf of my son (16), ill since december 2003 (almost 18 months now), just got a week ago a diagnosis from a brave pediatrician, not yet acquainted very much with ME/CFS and ready to read through all this documentations (canadian guidelines, etc. etc.). My son still being in danger of being harassed by schooldirector and child protection authorities and psychiatric clinic. Read on...

I became ill in February 1993, just a few days after receiving a tetanus booster. The original diagnosis (no one noticed the tetanus booster at the time, or if they did, they didn't mention it - and no one's mentioned it since) was "acute stress". To this was later added "anxiety" and "depression".

My GP recommended I take longer and longer walks every day. This I did - until I literally dropped. After a very worrying struggle to get home again I realised this was not such a good idea. I kept trying to exercise, however, and it made me worse and worse, till it got to the point where I had no choice in the matter any more: I was bedridden most of the time. When I *was* able to go out, I couldn't do so without using a walking stick. Read on...

Many years ago, when I was only moderately ill with ME/CFS I tried a series of graded exercise therapy at a highly regarded private hospital down here. The first time I was inpatient for 4 weeks and then an outpatient for about 6 months. Read on...

I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed. Read on...

I'm Sue, mum to Lauren 19. who has been ill for 8 years. Lauren isn't well enough to write herself so I hope you don't mind a second-hand account.

Lauren was disbelieved by the first paediatrician she was referred to at age 12. This woman told her to do as much as she could, to get up at her normal waking time for school and then to go to school as normal. The second consultation a year later saw us berated as a family for "giving in" to Lauren and the implication was that she was school phobic or being bullied.

We were told to increase the activities she was doing and she would soon get better. I guess this isn't classic GET but the effects were the same – a total and utter " crash" which means that Lauren is now mostly bed bound, housebound and has to be helped to bathe (and sometimes to eat). Read on...

I’m in contact with many people with M.E. both by e-mail & letter & it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching & lecturing in 1986/7. I was supposed to do an M.Ed. in Human Relations at Nottingham University from October 1990, but I had to give up my place due to ill health.  They kept my place open for me the next year, but I was never well enough to do it. Read on...

I was diagnosed in 1988 by someone who was studying CFS. He warned me back then already that exercise while the virus was active was not beneficial. I proved it to myself that if I did a little too much, even just once, I would get worse.

In 2001-2003, I saw a doctor who clearly knows nothing about CFS. I was assured that if I would exercise I would "feel better". I tried it for a couple days, and again, felt worse. This guy is now petulantly telling disability that I'm still sick because I won't follow doctor's orders -- he can't accept that I am following some OTHER doctor's orders, not his. Read on...

*O* Cancer and Myalgic Encephalomyelitis

An Australian mother* explains the difference between how her daughter was treated by medical staff when she had cancer and when she later developed Myalgic Encephalomyelitis - and the devastating additional burden the ignorance and psychological propaganda surrounding M.E. has caused her child to have to bear.

BEFORE THE LIGHT DIES By Gurli Bagnall, October 2005.

'Like a number of other ME sufferers, I have succumbed to heart failure, a complication of ME which I believe is directly related to years of medical nneglect and abuse. My condition is terminal but at this point, I have outlived the specialist's expectations by about a year. I am therefore conscious of the fact that, contrary to his belief, the "time-table" is not set in concrete and I need a contingency plan. '

I had a mild/moderate case of ME initially....if only I had known to rest instead of to being advised to exercise as much as possible that might still be the case. Or I might even have improved somewhat, or even be leading a somewhat normal healthy life.

As it is I now have quite severe ME. I haven't been able to leave my house in a year (except for a trip to the emergency room for what turned out to be potentially life-threatening cardiac problems) and I have been almost completely bedbound now for the last 5 years and need carers to help me with the tasks of basic living - I'm only 29 and life for me now is just a living hell. Read on...

A day in the life of severe M.E. by Jodi Bassett

My Myalgic Encephalomyelitis story by Jodi Bassett

"I was 19 and living my childhood/lifelong dream of attending art school when on March 19th 1995, everything suddenly changed for me. I went from feeling normal one day, to having horrific cognitive and physical problems to deal with the next. It just came out of nowhere. My brain, my body and my whole life changed in an instant."

About the Author by Jodi Bassett

A Million Stories Untold by Jodi Bassett

Hummingbirds by Jodi Bassett

About information on my own illness on the site...  by Jodi Bassett

Listen to two radio interviews about M.E.! Click here for more information.

• The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Edited by Byron Hyde, M.D
• Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson
• Shattered: Life with ME by Lynn Michell
• CFS: A Treatment Guide by Verillo and Gellman
• Osler's Web by Hillary Johnson