Patient and carer voices
In the plethora of views about the research and management of ME, the authentic voice of the sufferer is rarely heard. On these pages you can find a selection of short patient histories.
If you would like a resume of your ME story to appear here, please send us the text. It should be a maximum of 250 words in either Word for Windows or, preferably, plain text format. Please indicate whether you would like a pseudonym to be used.
For more experiences, have a look at the portal from the Invest in ME site, which leads to an online gallery with stories of people with ME and their carers/patents: ME Experiences — Your Story.
Rose’s Story
The Guardian Weekly online paper recently published a story titled “Surviving ME” about the experiences of 21-year-old Rose and her seven-year struggle with ME. Read it here.
David’s Story
David first became ill in October 2004, aged 11. Doctors thought he had Addison’s disease, although he was diagnosed with pityriasis lichenoides (PLEVA), a really rare skin condition. In March 2005, David started to become more ill, and his condition was put down to an unknown virus. Interestingly, PLEVA can be caused by the Epstein Barr virus which is also associated with ME, although David was never diagnosed with this virus.
David never really picked up from then. He was a bright, articulate little boy and had completed and passed his 11+ and had commenced grammar school. He did have a vaccination around this time. He loved rock climbing, took the Irish National Champion title in Jujitsu in 2002. He was a member of the boy scouts for years and loved trampolining and going to the cinema with his friends.
From March 2005, David started to find it increasingly difficult to manage in school. There was a repeated cycle of sending him to school and then the school would phone to say he was ill and we would have to go to the school to bring him home. He started to deteriorate from then and ended up in hospital for a few weeks, getting 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 we could all see that David was a very physically ill little boy.
We can remember around May 2005 David had started to complain of severe chest pain. The only way to describe David’s pain was like someone having a heart attack on a nightly basis, his colour changed drastically going grey with white lips. In desperation his aunt asked the consultant paediatrician she worked for to have a look at David and he was referred to a consultant anaesthetist. David was re-admitted to hospital for a nerve block into his chest, but the doctor was unable to do this as swelling had appeared on the right side of David’s chest. He had an urgent bone scan which again came back clear.
David was finally diagnosed with ME in October 2005. We thought we had struggled before, we were unaware that really David’s battle with ME had only just begun. He started to get all different symptons: severe hallucinations, memory loss, concentration difficulties, aches and pains all over his body, unable to wash and dress himself, problems with his stomach, mouth ulcers, headaches, sleep disturbance. The list goes on and I am sure all are well known to his fellow sufferers.
Home tuition was put in place I think around the end of February 2006; I was anxious that David did not miss out on his eductation. Initially this was three afternoons a week. In hindsight, and with the knowledge I have now, this was too much for David to cope with and therefore had to stop. His sleep pattern had completedly reversed, with him being up all night in pain and eventually getting to sleep at 7 am and then sleeping most of the day.
Today things have not greatly improved. Pain is a constant in David’s life and a challenge for him, his struggle continues. His brother recently wrote the following poem which expresses how the family feel:
You’re a threat to peace,
The one that will cause a war.
You’re the one that has no mercy.
You will steal his life from him.Waiting patiently in your victim,
You’ve been there since birth.
Waiting patiently to strike him down,
An unexpected time is best.You’ve forced your victim into another world,
It’s cruel and unwelcoming.
Time is not of the essence,
Do you know how long you’ll keep him there?Rally Round! Help!
Fiercely raise your finger.
Give it to those who don’t believe.
How can this be in someone’s head?
Are they blind? Or just brain dead?My brother, where art thou now?
Living each day in a ‘conscious coma’,
Disabling your right to live your life.
Fight back my friend, fight back.
This story was written by David’s mum and dad, who continue to fundraise for ME research.
Linda’s Story
I have severe ME. I have been like this for 12 years. That means there is no cure. At best, I believe, there’s a 2% chance of a slight recovery, if that.
So opens the harrowing film — Living with Severe Myalgic Encephalomyelitis, a DVD Presentation by Linda Crowhurst — released by the 25% ME Group as part of its ‘The Light of Truth Campaign’ for ME Awareness Week, 2006. “Severely ill are severely overlooked; just ignored and invisible
” said the CMO’s report in 2002, and since its publication little has changed for this section of the ME patient community — the most severely affected.
View this important short film at the 25% ME Group website.
Gwyneth’s Story
Gwyneth
I had a sudden deterioration in health and was hospitalised for a month and was found to have had a mini-stroke, but it was obvious that there was a lot more wrong with me. By a process of elimination, which meant endless tests (which made me a lot worse), they came up with ME. I spent most of the first two years in bed and, although I’d had a reclining wheelchair made for me, the movement of going in it made me feel worse so I wasn’t able to use it very often. After two years I was getting out in an ordinary wheelchair for short periods of time but I couldn’t be upright for too long before tiring. Most of the first year I could get to the bathroom and back but that was often too much for me and I would fall and become paralysed for up to twp hours before I could move and get back to bed.
I made gradual recovery over the years; obviously I learnt to pace myself as I improved. Like most sufferers I had a multitude of symptoms and pain as well as exhaustion. Thanks mainly to a variety of complementary therapies, the support of a brilliant district nurse (who also gave me Reiki healing), a lot of emotional cleansing and self-awareness work, I’ve made 100% recovery. I also had a supportive family. I realise I was lucky in as much as the right people to help seemed to be pointed out to me as I went along. We were also lucky that we could afford the treatments. Getting well cost thousands. I feel my programme of recovery was due to tackling the illness from every angle, and it had to be holistic.
The 3 things that I feel made the biggest difference were:
- My herbalist/naturopath detoxed my body, dramatically changed my diet while supporting me with herbal tinctures and many other treatments
- Having my amalgam fillings removed by an expert in Harley Street cleared the brain fog and gave me back my memory and concentration
- By tackling the emotional problems that I feel had been keeping me suffering from low-level stress for years, therefore causing me to have a compromised immune system and adrenal burn out. Which then left me vulnerable to pick up viruses and for my body to become so weak that my body filters like my liver and kidneys weren’t functioning properly, therefore I couldn’t naturally detox so I ended up with mercury poisoning, viruses, organophosphate poisoning and an intolerance to food and chemicals, etc.
I also believe that like most people I wasn’t drinking enough water and was dehydrated, and when you think our bodies are mainly water, if we don’t take care what we put into our bodies, no wonder our cells stop functioning properly. I made a complete recovery and have been well for 2 1/2 years, and in June 2006 I am taking a month off work and I am walking across Wales (see her page here for donations) from the south coast the north coast. I’m doing this partly as a personal challenge because it’s good to be able to walk again, and also to raise awareness for ME. I’m happy for any ME sufferers to call me just for a chat or to hear how I recovered; we’re all different but some of what worked for me may help others (Tel: 01594 837933 or 07950 160389, e-mail: gwyn@gwynhopkins.co.uk, or read my website www.mefatigue.co.uk.)
Megan O’s Story: Overheating in Reverse
A friend drew my attention to Reverse Therapy. She had undergone several sessions but was very secretive as to what it involved. It was noted that her health was indeed returning to her. Of course, being sceptical about these ‘mind cures’, I put it down to coincidence: she was getting better anyway. Then another chum decided she would undergo the ‘treatment’, et voilà! The same thing happened: she started to improve. At this point, I did sign up for the therapy to see if indeed it would help.
I had a very lovely and sincere therapist. They believe that your hypothalamus ‘overheats’ because over a period of years you ignore what your body is telling you. For example, if you are in a situation you are not comfortable with, you should do what your body wants and leave that situation, instead of grinning and bearing it. Or express the feelings in a journal, or articulate what you feel, instead of bottling up your emotions. For instance, it could be useful to keep a diary about how you’ve felt over the course of the day — when, where and whom you were with when symptoms worsened, got better or stayed the same, etc.
The therapist would ask personal questions in a very sincere and respectful manner and, from your replies, formulate a message which was written down on a piece of cardboard. When you felt symptoms getting worse, you were to read these messages in an attempt to stop the hypothalamus from ‘overheating’ and thus alleviate symptoms. Unfortunately for me, when I did more, reset my body clock, listened to my body, read my messages, wrote down how I felt, which for me was a lot of energy output, I became more ill.
I do firmly believe that people cured by these therapies have a chronic fatigue-like illness as opposed to neurological ME. We know that misguided, ill-informed doctors use the ‘one size fits all’ mantra, tarring everyone with the same brush in the diagnosis CFS. I feel that people whose ME/CFS was triggered off by viral infection/flu/vaccination will (I suspect) find these forms of treatment potentially damaging and disheartening and could perhaps be hit hard financially. I spent over £500 on my credit card.
I have had ME for over 23 years and feel there are sincere people out there wanting to help, but until a clear distinction is made between a chronic fatigue-like illness and neurological ME, some indeed may get better but the subgroup with ME is getting worse because of organic agents. And with the higher the energy output, the more chronic the disease process becomes, and no amount of Reverse Therapy, Cognitive Behavioural Therapy, Graded Exercise Therapy, Wellness Enhancement, or whatnot is going to succeed. It is research and education that will end the frustration of being kept out in the wilderness while doctors play politics with real peoples’ lives.
Veronica’s Story: ME, Infections and Polio
Polio virus
I thought my problem started after a flu injection in 1975 — the injection happened on the Friday at 3.00 pm and by 4.30 pm I felt extremely ill, and ending up having to be off sick for the next two weeks.
From then on I was constantly hit with viral infections, and had a clammy band from my neck down to my spine when any infection hit. But I kept working despite the illness — for example, one day my head started throbbing and my face started swelling down the left side, and I had to be sent home again. Hospital investigations at this time found a great increase in white blood cells, showing that I was fighting what was assumed to be a viral infection, but whatever it was I had constantly aching muscles, bone pain and extreme weakness, and headaches and drowsiness — I felt like a zombie. I had an EMG which showed that the long nerve tissues were affected but I was told that after a year I would be back to my old self.
Eventually, a neurologist said that the infection had progressed to my muscles and that it was ME — in fact, years later I was told that I was the first confirmed case of ME at Ninewells Hospital in Dundee! I remember thinking, “Great. Now I’ll get tablets to make me better.
” But things slowly got worse — my memory, my speech, my life was turned upside down. But I knew I had to get back to work — I had to get better. But I started having types of seizures which terrified me and would go into deep sleeps afterwards. At this time ME was unheard of, and my family would constantly harp on about things like, “you were fine an hour ago”, or “we all get aches and pains”, or they would just ignore me. I spent the following years going downhill, and no-one could understand, not even myself. But I was determined that the illness was not going to beat me.
Fortunately, I had a very good doctor who encouraged contact with other people with ME, and from him I got an address of an ME group — one of the earliest ME organisations with about 500 members scattered across the UK — and this was a useful link which helped me through a very difficult time. In fact, I recruited quite a few people and you could say I am one of the ‘founding mothers’ of the ME patient movement in Britain. I remember, however, being confused as the years went on that many of the people diagnosed with ME did not seem to have the same illness as me — for instance, no infectious start, no EMG to confirm nerve damage.
Over the years my nerve and muscle problems have got worse. And then in 2003 I was asked a question: “Did you ever come in contact with polio before vaccination?
” (More about polio here, pdf.) And I answered, “Yes, bulbar polio.
” There had been an outbreak of polio in Dundee and my mother died, aged 24, in hospital in Dundee — all of us had come in contact with the virus at the time. Of course, it turns out that early epidemics of ME following polio outbreaks were considered by some to be atypical polio, and synonymous with ME. Many polio sufferers recovered only to be hit with a CFS-like illness many years later.
Could it be that being exposed to bulbar polio in 1951 had come back to haunt me, and that the new viral infection of 1975 had been the trigger for a recurrence, possibly of a dormant virus? My own feeling is that in many ME patients unknown polio-related viruses are involved in the illness and its progression, as Dr Dowsett has suggested (read more here). And I believe that if the healthcare services get people early they can prevent the illness from progressing to a point where it causes damage; if we push people with ME too far at the onset of their illness, the damage caused will come back to haunt them in later years. This is why money must go into biomedical research, for example on virus involvement and vaccinations, instead of being wasted on PACE trials.
I was fortunate in the 1980s to have two wonderful consultants who had open minds and were way ahead in their views of ME/CFS. But now — as patients all know — medical practices seem not to know the medical history and seem dismissive of ME/CFS. We pin our hopes on science to sweep the globe of this illness for ever.
Madeleine
The first time I went to France, in 1991, I packed a duffel bag full of black and gray Joan Vass knits, my Nikon, my journal. I took my limited but well-rehearsed French vocabulary and my late-blooming wanderlust. I was thirty-nine. I went by limo, alone, to Kennedy Airport, ate croissants and Brie en route, stayed in the eighteenth arondissement at a studio apartment. Five years later, on my next trip to France, I am taking a charter flight full of people who, like me, are sick and want to get well. Some have cancer. Some can’t see. Some can’t walk. Some talk in single syllables most of us can’t understand, while their bodies jerk and twist in steely wheelchairs. Again, I pack my duffel with well-coordinated knits, but this time I take my illness.
From “The Pilgrimage” by Madeleine Parish. Read more at the “Reflection” section of My Body Of Knowledge.
Suzanne’s Story
“The more severe the illness the more you are a forgotten person.
”
Suzanne was a high achiever, academically and in sports (captain of her school and village netball teams and playing for the county two years before she reached the selection age). She had a lot of friends, without a bad word to say about anybody, and was good company to whomever she was with. Then she was struck down with ME at Christmas 2001, aged 14. Suzy was in a ‘living death’ state for the first two years of the illness, and her condition is still very sad. As the months dragged by for the first two years, Suzanne deteriorated in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement. Suzy’s life was, and still is (except for fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room (blankets over the curtains despite it being a north facing room, bedside fans continually on even though she only wears thin short-sleeved T-shirts all year round, and ear plugs in even though the room is in a very quiet location).
Suzanne spent two years managing to be awake for about 2 or 3 ten-minute periods out of an hour, each 24 hours, if we were lucky. The fact that she can now manage a whole unbroken hour most nights hardly seems anything to shout about, but it’s made a big difference to the last 9 months or so. This hour is between 7 and 8 pm. It only used to happen after Mum or Dad had sat beside her bed gently trying to coax her out of her comatose state for at least 2 and a half hours. Suzy’s motivation for waking was that she was desperate to try to eat (even though this wasn’t always possible) as she was so fearful of being tube-fed, something we were being told must be the case. Two people in the room, or one person stringing more than three sentences together, was and still is too much for her. Thankfully, things in this respect have now improved quite a lot. If we ever thought we were wrong in our refusal to allow her to be admitted to hospital and declining the use of recommended drugs, we would think of the awful experiences of some of our contacts. These had cemented our belief that there is no understanding at all to be found in hospitals. Now, three years on after living with the illness, we know that there are misjudgements about ME (particularly very severe ME) and our early doubts have become completely vindicated as far as we are concerned.
Looking back now, although things are still terrible, they are better than they were a year ago. Suzy can even listen to a couple of tracks from a record or watch 4 or 5 minutes of TV some days, which was out of the question up to the middle of last year. We feel this ‘improvement’ has emerged because of options we took upon ourselves to go for, such as:
- No longer trying to wake Suzy twice a day
This was a very difficult decision. But the fact that after a few months she managed her awake hour without us having to sit silently beside her — and that the hour ceased to be broken — reassured us that we’d done the right thing. - Forgetting about the concept of ‘graded exercise’
We were certain that the graded exercise programme Suzy followed in the early stages of her ME was a mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine and instead took the approach of letting Suzy do what she felt she could do — which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice about. - Stopping the involvement of psychologists
A third decision we know to have been the right decision was to stop the involvement of psychologists in what we know is not a psychological illness.
These are 3 of the departures from conventional treatments that we are convinced have brought about the positive changes in Suzy’s condition. It is true to say that in cases of ME the more severe the illness the more you are a forgotten person. Public awareness and the biochemical research that ME Research UK is involved in to supply understanding to the medical profession, are so important and urgent.
Note: This story was written by Susanne’s parents, and is reproduced here in full. Sadly, there are many such stories, rarely reported.
Matt
Matthew Stone was an active man, a keen member of both the local, school and university football teams, and the life and soul of any party or social occasion. After a BSc in Money, Banking and Finance at the University of Birmingham, Matt obtained a place on an MBA course in Football Management at the University of Liverpool and, in the interim period before starting the course, went travelling. However, during his time in Canada he started to feel very tired most of the day and this tiredness progressed to such a severe state that he flew home in 2002. After numerous consultations with specialists, Matt was diagnosed with Myalgic Encephalomyelitis (ME). Now, 2 years on, he is unable to walk or move much of his body without causing severe exhaustion. He is unable to eat, is in constant pain and requires 24-hour care.
Matt and his family have followed the conventional medical routes to no avail and have since tried every therapy available. However, due primarily to the lack of research in the field of ME, and the "posh person's flu" stigma attached to the condition, the NHS have nothing to offer Matt and he has had to turn to the private sector for treatment. He now attends the Breakspear Hospital in Hemel Hempstead, a day hospital only, which means that Matt and his mother Sue have to rent accommodation near to the hospital where they can stay in the evenings and at weekends. With the cost of treatment, private ambulance costs, rent and loss of earnings, the financial and personal strain on the family is incredible. They are considering selling their family home to pay for the treatment.
It is often said that bad things happen to those who do not deserve it, and this is a perfect example of just that. Matt, now 24, is an intelligent, comical and, most importantly, kind and caring individual who would do anything for anyone who knew him. He has never had a bad word to say about anyone or anything, let alone cause anyone pain or suffering, and he most definitely does not deserve the card he has now been dealt. All Matt wishes for now is to be able to walk, talk, eat, drink and carry out some of the basic daily tasks that we all take for granted, as he once did. The aim of his family and friends is to rehabilitate Matt to a stage where he can start his MBA in Liverpool and achieve the dream of which he has recently lost sight.
The family are raising awareness of his plight (to read more, please download the Matt Stone leaflet (pdf 129 KB)), and have planned a series of fundraising events — including a charity ball in aid of Matt's Appeal, and a Fun Sports day and the London to Brighton bike ride. Any assistance that you can offer will be greatly appreciated, and to contribute please write to the Administrator at ME Research UK for further contact details.
