*O* Suzy's story (on Invest in M.E.)

'Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.

The months dragged by.  For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement. By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.'

Shannon's Story (on Invest in ME)

I'm 24 years old, with skin milk-white from staying indoors. I've been house bound and mostly bedridden for six years.

Even my dad doesn't believe me at times that I'm really sick. Or he latches on to some far-fetched explanation of things, or wacky new treatments. If a doctor tells him it's psychological, he's believed the doctor over me. I hate that. Always I have to defend myself.

My mother died, and there is no one to take care of me. I am very weak, and it's difficult to get food, and I can't eat processed food because of my sensitivities. I was wishing today that someone would walk into the room where I was lying on the floor, helpless and out of it, and bring me a warm bowl of chicken soup. It was five hours before I could get up and open a can of tuna. At last count, I had gone 16 days without bathing.

Sara Bass's testimony to the CFS Coordinating Committee on Stephen Paganetti's bedridden case.  

[from Invest in ME]

‘This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising....'

*O* The Ean Proctor Story

In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.

*O* Ean's Story by Barbara Proctor, Ean's mother

An excerpt: 'On Monday 23rd May, two social workers arrived on our doorstep and took Ean away under a "Place of Safety Order". We were not even allowed to go with Ean in the ambulance. Ean was to be in the joint care of Dr C, a psychiatrist, and Dr B, a paediatrician, at the local hospital.

During the whole time Ean was in care, we were allowed to see him for only half an hour a day. He was alone in a ward, could not move, could not speak, and had no way of getting help if he needed it. He had been told that he had been taken away from us because he was dying. Ean had to endure the most horrific mental torture. One day the psychiatrist told him "There is nothing wrong with you.... if you don't talk next week, you will be better off in Ballamona [the mental home]". Ean was so scared, he wet himself as he sat in his wheelchair. The Staff nurse would say to him that if he didn't speak or walk "He would grow old in his wheelchair, stay in the hospital for ever, and never go home again". One night, Rob and I found him very distressed in his wheelchair, all alone. He had wet himself, as no-one had asked him if he wanted to go to the toilet, at lunchtime... It was now 7.40 pm. Friday was the day Ean lived in dread of. This was the day the physiotherapists would take him off to the remedial pool.

Ean's case is also mentioned in:

To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July, 2005

Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment by Professor Malcolm Hooper & Horace Reid, January 2006

Another Meadow? by Eileen Marshall and Margaret Williams, 16th July 2005

 

Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003

Illness made Laura Hillenbrand a long shot to finish the acclaimed book Seabiscuit By Sally Jacobs

A Sudden Illness -- How My Life Changed by Laura Hillenbrand

Laura Hillenbrand Surmounted Illness To Cross the Finish Line With 'Seabiscuit'

My Story. by Mary Schweitzer

On October 24, 1994, I went up to my office at Villanova to grade essay exams. Hours later I "awoke" from what seemed to be a coma - I had no idea how long I had been sitting in the same position, seeming awake, yet not aware of my surroundings. I could not read one word of the bluebook in front of me. It took fifteen minutes of sheer willpower to be able to stand up and use the restroom - let alone to drive home (one hour from Villanova). I was diagnosed with CFS/M.E. - Chronic Fatigue Syndrome (which I later learned is called Myalgic Encephalomyelitis in the UK, Canada, and Australia). From that point on my life would never be the same.

Having to give up work by Mary Schweitzer, 1997

For some it may be a choice whether or not to work, but for me there are no choices left. I am - was? - an associate professor of history at Villanova University. Johns Hopkins Ph.D. 1984. My dissertation won a prize, and was published by Columbia University press. A husband, two kids, two dogs--I was already very productive publishing, but I knew that my peak years would be in my late forties and fifties, when my children were on their own. I didn't expect this. 

My Ampligen Diaries by Mary Schweitzer

February 4, 1999, I began treatment with an experimental drug called Ampligen. These are my Ampligen Diaries. I expect to be on it a full year, at least, and it will cost my family $40,000 for the drug, the infusions, the doctor's visits, and the testing. I wish there was a way for insurance to pay some of this cost, but this is the only way the FDA will release it right now. I feel very grateful that my family has been able, and willing, to fund this protocol, and I hope it becomes available to others soon.

[from Invest in ME]

'I thought I'd give you an interesting update about what's been going on when I've visited the local ME centre. Last time I was at the centre the doctor was concerned about my heart rate, and thought I may have an underlying condition. He referred me back to my GP, and wrote a letter to ask the GP do some tests to rule out any heart condition. He said I would be seen again in three months for treatment for ME.'

Testimony about Casey to CFSAC

On July 4, 2005, sometime between 2:30 am when his mother kissed him good night, and 6:30 am when his father came downstairs, Casey Fero died in his sleep.  His heart simply stopped. Casey Fero was 23...

 

From Pat Fero on her son Casey

It has been 12 weeks since my son Casey died. Notes and e mails continue to arrive at my home and at the office of the WI CFS ASSN. The support from many diverse people and groups has helped me and my family work through these difficult times.

HILLARY JOHNSON TALKS ABOUT CHRONIC FATIGUE SYNDROME AND HER NEW BOOK, OSLER'S WEB

*O* A Personal Story - Sheila Barry (on Invest in M.E.)

'I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions. Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.

I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter [a ME sufferer,] chose to end her life.'

[Online]

'During his time in hospital all the other young people on the ward were continually told that my son could speak, and could move, but was choosing not to. They would frequently ask me why he chose not to speak. The nurses would say, "It's a lovely day, what a pity you're not out there", as though he could be if he wished. Day after day he was treated this way.

He was admitted to the hospital on 14 December 2000, initially for a three-month assessment. At the family meeting on 25 January 2001 it was stated that the final review would be on March 15 2001 and if there was no progress towards free communication a discharge plan would be agreed with the family. My son's lack of speech was clearly seen as the most serious of his disabilities.

An action plan, such as the one attached, is not respectful of the patient, could not be discussed with the patient, or carried out in partnership. It is not good practice to cause patients "a lot of pain", I question whether it is ethical, indeed it may be unlawful.....'

From the 25% Group, A carer's story by Greg Crowhurst (Commenting on the MRC report.)

'I have got about an hour. It’s an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts.

Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That’s a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5’s as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment.

Professor This and That meanwhile have spent the time building a nice little career thank you very much...'

(from letters to RiME)

'Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment...'

(from the RiME website)

I am writing in great despair. 1 have been a M.E sufferer (Myalgic Encephalomyelitis) now for 14 years. I have had this since the age of 16, I am now 30 and have had my life ruined and taken away by this very misunderstood illness. I live day to day trying to cope with an array of symptoms and as there are no doctors who really know how to help or even all the symptoms you can suffer from.

1 know there are many people worse off than myself, but that does not give the Government the right to make no effort in funding any sort of medical research, to find a cure for M.E sufferers and for us to be treated like second class malingerers by the doctors We all need help to find a cure for this covered up illness now. Why should we have to suffer in silence alone'

Many M.E. sufferers have taken their own lives through sheer despair and I have the lost a wonderful friend to this and do not want to lose any more before you realise how awful this illness is. I suffer from breathing difficulties, heart irregularities, confusion, pain, muscle weakness, head pain, swollen lymph nodes, fevers, sickness, dizziness, severe unreality, shaking, have to use a wheelchair when I'm out and am pretty much housebound, This is some of the symptoms I suffer I want medical funding for research. It is my right and I want it before the next 15 years of my life are ruined.

(from letters to RiME)

When I contracted ME, I was a young student. Doctors were unable to diagnose or treat the illness but they maintained a professional interest, gave me (the patient) the benefit of the doubt, and were interested in learning more about ME.

The power and influence of the psychiatric lobby changed all this In recent times, I have either been treated as a psychiatric case who needs to be humoured or a difficult case that dues not fit into any medical category and which can be ignored. I have been put on Graded exercise and CBT Programs which have led to a deterioration in my health.

Psychiatric bias and manipulation of the facts has adversely-affected the way that I and others are treated by GP's, Consultants, employers and family, even.

(from letters to RiME)

'Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.)...'

[Online]

"I was in the prime of my young life when I became ill. I had a successful career, relationship, active social and sporting life. It was all lost at a promising point in my life. Now over 14 years later I am still too ill to regain any of it.

I was referred to take part in the CFS clinical trial (they didn’t believe in the term ME, or that a distinct illness of ME existed) at Withington hospital in the early 1990’s after I had experienced almost two years of continuing ill health following a sudden viral illness.

[...]...their ‘treatment’ left me worse and more debilitated than I was before I entered the study! I felt there was no concern for me as a human being and there was no further contact with me to see how I was doing, except a request some years later for me to take part in further research, which as you can imagine I quickly declined!

After this I began to hear from others their experiences of this same research team and became increasingly alarmed about what was occurring. I began to see many flaws in their trial. People enrolled in the trial were allowed to continue to take other treatments and to have other therapies, such as acupuncture and homeopathy independently, during the trial period. The doctors knew about the patients having other treatments independently during the trial period and yet these patients still remained in and were part of the trial and its results.

This negates the whole purpose and the validity of a randomised, double-blind, placebo controlled trial and therefore the results. I am therefore astonished when I see that the results have been published in a reputable journal * and are frequently quoted in other work....'

Alison Hunter's story by Julie Robotham

The Alison Hunter Memorial Foundation

The Alison Hunter Memorial Foundation was established in 1998 through the initiative of the Public Interest Advocacy Centre, and The Public Interest  Law  Clearing House as a project of the law firm Minter Ellison.

The Foundation is an enduring memorial to Alison Hunter and all those whose  lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from  complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease.   Alison courageously fought ME/CFS for ten years and was an unstinting  advocate for young people.

Betrayal of the Severely Ill? Appendix 12: Letter from QLD ME/CFS Society to the RACP Working Group

‘A young woman who had been hospitalised due to the severity of her illness (she was having difficulty remaining upright due to her blood pressure collapsing) was removed to a psychiatric ward against the wishes of her treating physician. The physician was actually threatened with the loss of his visiting rights to the hospital if he did not consent to the move. The young woman had a copy of the draft placed in her face with the "exercise bits" highlighted. She was told by an infectious diseases physician that she could expect to faint several times, but it was only through exercising that she would get better.

The staff have been saying to her that she is just a "naughty girl" (she's 26 and a qualified physiotherapist) and "doesn't want to get better". Her mother is currently sleeping on the floor of her room to prevent psychiatric patients invading it at night, or staff members verbally criticising her or attempting to make her do physical tasks beyond her capacity.’

From the 25% Group, by an anonymous sufferer:

‘Governments, researchers and the medical profession in general need to realise that it is not just about saving lives but quality of life and that with severe ME, this quality is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years; sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it’s got to get better soon even after years of disappointments.

Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when I received 25% burns but with ME this form of "treatment" only results in deterioration rather than increasing your capacity! If only that was the answer I’d never have been in this hell. I’d have been well years ago enjoying the wonderful life I led before ME.’

Parents of sick child falsely accused of Munchausen Syndrome by Proxy (MSBP). 

Debra Potter Story

Debra Potter made a good living selling disability coverage. But like many working Americans, she learned the hard way that federal law now favors insurers.

*O* The National CFIDS Association Memorial List for those who have died from the illness 

By compiling this list, we hope to make people more fully aware of the seriousness of CFIDS/ME. Medical communities, media and governments understand neither how debilitating this illness is nor how those with it suffer. The United States National Institutes of Heath are not keeping track of the morbidity and mortality rates, although many have died and many more will if more is not done. The Centers for Disease Control and Prevention claim there have not been deaths reported to them. If you know of a friend or family member who had CFIDS/ME and has passed on, please help us in our quest to document the seriousness of this illness.

More personal stories are also available on the website: Listening to CFIDS