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For the past 22 years I have suffered with M.E/Chronic Fatigue. If you don't mind I'll refer to it as M.E simply cos its easier to lol. The first time I felt something very wrong and that I was exhausted to the point of the extreme was when I was 15 years old. I'd had a very bad bout of flu and was recovering rather well. I'd been off school, was ready to go back but then one day I was walking up my 14 shallow steps of my home to go upstairs to speak to my Mother who was sitting on the toilet with the door wide open not thinking anyone was about. I remember saying how rude and laughing and then grabbing hold of the banister and saying I had to go to bed as I was so tired and dragging myself there to which I slept for hours upon hours. I always think back to how I felt then and people thinking I was lazy and putting it on and since then I have really suffered, up and down with my energy levels. Of course M.E can come and go within us. It can ease up, get worse and not only do we not know really what causes it alot of Drs think its caused my Glandular fever or a viral infection of some kind. There is no definitive cure, no magic pill nothing to cure M.E, that's the bad news..... So this illness currently stands at affecting 250.000 people in the UK alone. It can be referred to as: Myalgic Encephalopathy or "ME" (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis). Chronic Fatigue Syndrome or "CFS". Post-Viral Fatigue Syndrome or "PVFS". Chronic Fatigue Immune Dysfunction Syndrome or "CFIDS". What It Usually Entails: It really does affect people differently and you can have one or more symptom of it so getting a diagnosis can be rather difficult in the first place. It can consist of severe/debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and bad concentration. My Experience With M.E: Not knowing it was M.E when I was 15 years old I was eventually diagnosed by my GP when I was around 20. Nothing much was said about it really, it was an off the cuff remark that I had Chronic Fatigue and I was left to it. However I went through ups and downs of tiredness to days where I was able to manage in life to days when I just stayed in bed, missing college and the likes through being so very tired. Again people around me thought I was swinging the lead but some days I just slept straight through for 16 hours or more and still felt tired after it. I always suffered headaches that not alot of medication would touch (I was diagnosed then with migraines) and my muscles would ache alot, particularly my arms when I was younger. M.E though, although slowing me down a lot in my youth, because I didn't understand it I just lived with it I was always getting colds and flu's, just when I was beginning to feel a bit stronger I was knocked back by something else. I was always having blood tests and things nothing was the matter usually. Then when I was 25 my Dad passed away. The stress really did take it all out of me as you can appreciate I'm sure. I was exhausted mentally and physically, got colds that I couldn't shake and was put on antidepressants in the end. Sure I was depressed..... I loved my Dad and he had died but I knew the tiredness wasn't just that and my bones and back were beginning to really hurt on a regular basis from then on. I took the Prozac, I got more tired but again I just slept alot, took painkillers and curbed my hectic lifestyle I had always tried against the odds anyway to maintain that but simply couldn't anymore....I was so tired all the time. Since that time back then I have had ups and downs with it but the time I feel well nowadays has lessened and I'm exhausted then ever. Nowadays I'm always suffering with unexplained colds, go near someone with flu or a virus and I know I'll catch it. I sleep 16 hours a day, sometimes more and just getting up from my sofa to make a drink can take every effort I have within me and my back and legs hurt all the time. I have a swollen gland in my neck, sore throat everyday and almost a constant headache. If I go out its short distances and actually as I am writing this I'm exhausted, in bed and after will probably have a nap after posting this lol. My concentration is awful and always after I have been up and about 4-5 hours I'm ready to go bed again as I feel like I have done a full days work and can no longer concentrate on even watching tv! So like I say there is no definitive reason for M.E. It can effect anyone at all and although blood tests can be carried out to see what state your sugar and electrolytes are in (which can show problems that may contribute to M.E) even then that isn't proof. My blood tests were fine yet I still have it lol! With M.E though people as a rule don't understand it. You can get labelled as lazy which if you genuinely have it can be really frustrating and demoralising in itself. I have got very angry with pushy people in the past saying I'm depressed, saying come on lets go clubbing when inside I feel like curling up and sleeping and half the time when I've slept I could swear I haven't and that I've been punched under my eyeballs and feel as rought as anything! So feeling as bad as I do and at times that life isn't worth living I decided enough is finally enough. You have to take control and one of the things for me that was important was to speak to someone, to get a proper diagnoses of the condition from someone who specialises in M.E and I had an appointment at one of the only M.E centres in the UK (a place that specialises in the illness) in Bristol to which I had to travel quite far to get to, but it was so worth it. I met the head of the department who was absolutely amazing and really listened. We talked about me, my past, my life and although I'm complicated with an eating disorder and with a thyroid condition which both can be exhausting illnesses anyway she still diagnosed me as I was ill with it as I had it from such a young age. Being diagnosed properly for me was a bittersweet experience though. I mean I already knew but it was a bit like oh great but there's no cure so that in itself was worrying to me and I didn't like the label! However once diagnosed there is so much support and so many avenues to explore its unreal and this is what has driven me to write this review. To try to positively say to anyone with M.E don't give up...please I almost did! The biggest thing that helped me to understand what M.E is, is this explanation from my specialist. Many years ago a burglar broke into my body and left a virus behind. My burglar alarm ever since hasn't been switched off properly and my immune system is working too well trying to protect me, hence me wanting to sleep so much. What we have to do as sufferers is to quieten or turn off that alarm....but how? A tablet even antidepressants are not going to fix this right? Sounds a bizarre analogy but anyone with M.E can probably understand what is being said here! I did anyway! Me, I have been taken on by an M.E clinic. Its like one to one therapy with lots of paperwork and questionnaires of how we are doing weekly so we can chart our ups and downs with the illness. I personally have started to keep an M.E diary I take with me rating my tiredness that day, what I've eaten how much sleep I have had, exercise and so on. I find this helpful to see what could be contributing to it. With no drugs about that are a miracle cure for this condition we are left with alternative remedies only really. Me, I've dabbled with them from time to time in the past but I don't know loads about them to be honest. All you can do is become your own mini doctor really. There is a fabulous book I heartily recommend that's called Foods That Harm, Foods That Heal (Readers Digest publish it) that has a rather large section on M.E but throughout the book we are told about general foods that can help to harm or heal us and energy boost and so and I refer to this often. I'm not ruled by it though! lol. I also own a book by Bach called 27 flower remedies which of course is about mixing your own flower remedies up to help calm you, energise you and so on and these are readily available in places like Boots and Amazon. Before sipping these little drinks or popping the solution onto the tongue I was drinking too much caffeine and living off energy drinks...they really need to go fellow sufferers trust me on that one lol! There are so many homeopathic treatments around and about and again this though this can be really expensive if your buying them yourself and a very hit and miss process indeed. Alot of Doctors still wont pop them on a prescription for you, some will though, good if like me and that you are exempt from paying for them (I have a thyroid condition so never have to pay any charges at all ever lol) but one small jar of Bach flower remedy (yes one) is about seven pound a pop otherwise! Did you know though that scattered throughout the country there are Homeopathic hospitals though? They do give out free treatment though you do need to go through your Doctor to access this service. I was determined to get to go here as, as I have kept saying there is no conventional medicine to help me otherwise. Not only am I tired and flu like, I have pains in my neck, shoulders, back and legs and so on. I have lack of self esteem at times and feel worthless. I can't focus, I cant be bothered with anything....and I don't have money to throw about trying to get a concoction right, or the energy to run around the shops for that matter either to get them lol. I told my Doctor it was my right to see people who could help me. She went through my syptoms, referred me and I was in the hospital chatting to a Dr within days and left armed with products to try out. I have Arnica for my back and general pains. I have Chlorella (Green Algae) to strengthen my muscles, Rescue remedy for when I feel panicked about my situation and a few different viles of flower remedies too. I take Magnesium and I avoid yeast laden foods as that is known in some cases to affect M.E sufferers which is referred to as anti Candida control also watching sugar levels and general diet. Light exercise and rest throughout the day is prescribed though no over exertion should be according to my specialists so I listen to my own body in this area! Other treatments are also available of course. Some Doctors are totally dismissive, the M.E Association and people who work within it are not of course and although I know a little about these treatments I have not undergone them yet but may well do in the future. There is light therapy, acupuncture and again once diagnosed you are entitled to them on the NHS, they just don't want to give them away to anyone lol! My therapy has helped me to understand that the only person who can put this condition right is me and that positively is a huge help. It isn't a cure though this is a very real illness but there is so much help available, so much information in the way of books, dvds and centres and self help groups. The people at the M.E society are amazing to just have a chat with and ask questions (contact them on 0844 576 5326) and they have a website www.meassociation.org.uk that has loads of information, updated often on it with information about self help groups in your area too. The main thing is don't suffer this debilitating illness alone cos you really don't have to. Get it diagnosed and take action against it, its your enemy not your friend. I'm not 100% I still have plenty of a way to go and have suffered years with it now but I will get there in the end I'm so sure of that!!
I have had M.E/CFS for 12years now. A lot of people say it's caused by glandular fever, but that was not the case with me. I had a very bad infection which I was in hospital for, but which I never recovered fully from. The symptoms I had at first were headaches, nausea, brain fog, bad concentration and exhaustion. My fatigue got so bad I dropped out of school at age 13 and was home schooled until i was 18. I was able to sit GCSES and Alevels at home. As the years went on I went from being a fun and active girl who took part in many after school clubs such as tennis, running, fencing and I went to the local running club to a girl who didn't go out, couldn't run or have the energy to play tennis. Every metre I walked was like walking a mile. It took me forever to walk anywhere as I walked pretty slowly. I ended up needing a wheelchair when I needed to go out to the shops etc... and even then I found it exhausting. After a few years I managed to get out more and increase my energy levels and was able to attend my local college and I eventually got rid of the wheelchair and was able to walk around london and be fine! I was able to start university a few years ago and I was a full time student. My health has declined a small amount since starting but I still no longer use a wheelchair and can get out and do things. My main symptoms now are just Nausea and fatigue, I can have days where I get out and do lots of things and other days when i'm in bed all day taking anti nausea medication. I never know how I will feel on a day to day basis and just take each day as it comes. For those of you who have ME it WILL get better, it might get worse before it gets better but one day it will. And for me the key thing was being more physically active and slowly building my strength up.
ME/Chronic Fatigue Syndrome M.E. which is known a MYALGIC ENCEPHALOMYELITIS and this can be broken up the first part my -muscle Algic- pain Encephato-brain Mye- spinal chord Itis- inflammation This is caused by an infectious disease like glandular fever and then in some people it causes an infectious disease process like the over stimulating of chemicals which causes stimulates the immune system. This is what they call a multi-system disease which affects the neurological system and also the immune, musculoskeletal, endocrine and cardiovascular system. The symptoms are very varied and it can take several months to be diagnosed. The usual symptom are pain, sleep disturbances problem with digesting, memory and concentrating problems and sensitive to sound and light. My daughter suffers from M.E. and she does expericience a few of these symptoms particularly the memory and concentrating problem and sleep disturbances. Always trying out new things she has tried going to bed at the same time, using herbal remedies to help with sleep. Also looking into the diet and gentle exercise when she is able to as some of the time her joints ache and muscle are very painful while moving around. I am pleased with the progress of her recovery a now she seems to have 50-60% of energy where a few years ago she only had 20-30% When he has good days they are very good but out of the blue there comes a bad day and you cannot always be ready for it when it decides to come and there I no actual pattern to them coming and when they do it can bring the person right down and it will take several days and weeks to climb but up to where you were. When muscles are not used regularly they become weak and out of condition then when these muscle tart being used again they will start to contract during activity uneven stresses are then produced. So if that does occur there could be a feeling of weakness and intability after that there could be delayed pain and general discomfort,. It I always best I find particuraly with my daughter to try to keep to a routine as the problems seem to occur when she does something a little different away from her regular routine which often can be a problem when there are family events etc to attend a some people may not be a understanding. Thee are just my thoughts about M.E and there is lotsmore that I can write about but I will stop there.
I wanted to write a review about my experiences of having M.E (mostly throughout my teenage years) to help raise awareness of the illness and hopefully to help others who suffer from this. I remember the feeling of dread every morning when my mum used to wake me up to get ready for school. Every morning was the same, I felt too ill to even be able to get out of bed, let alone manage a full and active day at school. I was only 11 and after a series of viral infections; Chest infections, Chicken Pox and various throat infections my body just didn't seem to recover. Each day I had to face a multitude of symptoms, it varied from day-to-day but included; exhaustion, muscular and joint pain, headaches, feeling flu-like and feverish, having problems concentrating, sleep problems such as insomnia and nightmares, stomach cramps and pain, feeling dizzy and an increased sensitivity to almost anything- such as light, noise and temperature. I was also susceptible to picking up further infections and colds. I also suffered quite badly with depression during this time - although whether this was a symptom or a consequence of dealing with the illness I am not sure. This was in 1991 and little was known about the illness M.E (Myalgic Encephalomyelitis) at the time, which is also sometimes known as CFS (Chronic Fatigue Syndrome). Back then, if people had heard about it, it was often referred to as "Yuppie Flu" and one doctor also told me that I had school phobia. I found this a shock since all I wanted was to be 'normal' like my friends and my ambition was to be a teacher since I loved school so much! Eventually a Doctor diagnosed me with M.E - which helped as I began to have the support I needed but I suffered for another 6 years with severe M.E. This meant I missed out on most of my school life, there were periods when I felt a little better and would try to go back but then I would suffer a relapse and I would be bed-bound all over again. I was only given a home tutor in my last year of school so for most of the time I taught myself from textbooks sent home and I also read a lot of books, something I still do today! I was given a wheelchair, but the stubborn teenager in me refused to go out in it - I just couldn't imagine my peers seeing me in this condition. It is a difficult illness and is often misunderstood - people would say "But you don't look ill!" and all family and friends seemed to have an opinion about it. I lost all my school friends - I don't think it was high on the list of teenager's priorities to visit me while I was in bed! Throughout this time, my family were desperate to find a cure or some treatment to help alleviate the symptoms. We tried all manner of painkillers and medication from my doctor - which had little effect so we turned to alternative therapies. We tried Acupuncture, Aromatherapy, Herbal remedies and Homeopathy, again this didn't help, but we didn't stop trying, sometimes an exhaustive process itself. I wish I could say that I did know what eventually helped me to recover but I don't think there is a miracle cure. I feel that more research is needed to help sufferers find the causes and suitable treatments. The one thing that I think did help me on the path to recovery was to pace myself - not to overdo things and to rest whenever I feel like my body needed it. It was also important to try and gradually build up what I could manage, however small and to keep my mind active when I could cope with it. It was a very slow process, and it can be frustrating - M.E sufferers often have setbacks and relapses. I also found that I was more optimistic about my future after I came into contact with other young sufferers of M.E, it helps to share experiences and to talk to people who understand the complexities of the illness. I found that at the time, although there were general support groups for people with M.E that there were none that catered for young people specifically. I helped to set up a charity called AYME (The Association of Young People with M.E) with other young people and a wonderful woman called Jill Moss who was a retired teacher and a fellow sufferer as well. I ran a postal library for housebound sufferers like myself and I was also a committee member for many years. I am proud that this is still going strong and is a national charity offering support to thousands of sufferers. I was also able to take my GCSE's at home (a strange experience as my cat often tapped on the window, indignant at not being allowed inside the house during my exams!) and I passed all of them. I was only allowed to sit 5 and I had to argue my case with the school who did not want to enter me for any of them since I had missed so much of my education. I had always tried to keep up as best as I could though and remember a quite determined teenager speaking to the Head on the phone about what I should enter! Luckily, I won that battle. It hasn't been easy but gradually over the years I was able to return to studying, part-time at first, and I completed A-Levels at a local college where I began to make new friends and begin a new life. I have had several setbacks, I managed a Psychology degree at University but had to take a year out recovering again as I had a fairly severe relapse. So it sometimes felt like one step forward and then two steps back. I do try and draw some positives from my experiences. It made me determined to study hard and it makes me appreciate my health now, I try to make the most of everyday and enjoy what life brings. I am now a teacher and would say I am about 95% recovered, I can manage a full-time job but only really have a social life at weekends and holidays so I ensure I spend my energy focusing on my job. (That's probably the same for most teachers though!) I hope that in my job I am able to help teenagers - I think it is quite amusing that considering I was told as a child I had a school phobia that I now spend half of my life working in one! I hope that anyone who is suffering from this now is given a quick diagnosis and the support they need. I would definitely recommend joining a support group - AYME is great for anyone under the age of 25 or contact the ME Association or Action for M.E - national charaties who can also put you in touch with local groups.
ME/CFS touched my life some nine years ago. I am writing this review as the wife of a ME/CFS patient. Firstly why the dual title? Well as with most things connected with this awful condition there seems to be a debate regarding what to even call it although CFS is now the accepted name for the condition. This condition really divides opinion-so many people think its a skivers charter and that it has replaced the "bad back" as a way of avoiding work. WRONG WRONG WRONG. Some of the comments that "friends"(and some family, sadly) have made include "well I get tired but I don't go running off to the doctors;" "Its all in the mind you know;" "Well he doesn't look ill to me;" "I'd like to see you if you had(insert specific condition) like i have:" Or the quite stunning "but hes so tall!" I am still trying to work that one out! In January 2000 my (tall!) husband came home from school(he is an English teacher) and said that he didn't feel very well and that he had a really bad headache and he went to bed. Without boring anyone with the ins and outs of the next 30 hours(awful) I found myself watching my husband being admitted to hospital with meningitis. He looked so helpless with various tubes and a drip in. He was very poorly and they were very concerned about his condition. Eventually he was discharged but had to undergo various tests including a CAT scan and enough blood tests to keep a vampire happy for a month! Even though he was gradually improving from the meningitis things were far from ok. He was weak and felt washed out. However we weren't unduly concerned as we just thought it went with the overall recovery and was to be expected. My husband mentioned this to his consultant at a follow up appointment. It was this doctor who first mentioned the possibility of ME(as it was known then) however that's all that happened he did say to have a word with the GP if things didn't improve within a month or so. Well things didn't get any better if anything they got worse. He did go to his GP who was unsympathetic to say the least. She made it crystal clear that she did not believe that ME existed. He was prescribed anti depressants and advised to get back to "normality" as soon as possible(this was just about the worse advice he could have been given) He did go back to work although he was really having a really hard time. During he started to see another GP within the same health centre. This time the doctor was much more willing to listen my husband and didn't treat him as a malingerer looking for any excuse to avoid work. This alone was a terrific help. He had convinced himself that he was weak and had to do better. At this time he had applied for(and got)a new teaching post. As with all teaching jobs he underwent a medical. He was totally open with the Occupational Health doctor(due to the previous illness it was a full and comprehensive medical) It was felt that he was employable although the Dr did have some concerns about his overall health and felt that he had returned to teaching far too quickly. However(thank God) he felt that even if it was ME the head teacher(who had had first hand expierence of ME), the occupational health department in general and more importantly himself(who had written a paper on ME) would all be able to support and assist my husband. So he started at the new school in the September. He had almost nothing during the summer holidays other than rest. The school was great, with terrific children and he loved everything about the school. However he was so poorly that I started to think he had something terminal. He had no energy, had loads of aches and pains, skin problems, could sleep on a washing line, was depressed, frustrated,weak and had no energy at all. He had loads of bugs at this time as well. All of this in someone who previously had never been ill(prior to the meningitis had only had had six days sick in his entire working life) He got the flu and was really poorly and it became obvious that he couldn't carry on as he was. The school was very supportive and he got loads of support, however things just went from bad to worse. He would drag himself into work when he really should have been off. He would sometimes have to sit in the car outside our house for fifteen minutes before coming into the house as he didn't have the energy to get out of the car and walk down the path.(We only have a small path) He used to get into school by 7am so that he could rest before the start of the school day. Always blaming himself for his "weakness, his "lack of guts" and his "uselessness". The fantastic head of occupational health managed to refer him to a specialist ME clinic for an initial assessment. When he was eventually seen(after a battery of yet more tests to rule anything "nasty" out) and the verdict was that he did indeed have ME. There was no doubt of this. In many ways this was a relief as putting a name to the symptoms helped me if not him! He was still blaming himself and unwilling to accept that he did have a medical problem. He was then accepted on to the ME/CFS(this was the point at which I was aware it had changed name)treatment programme at the Royal Liverpool Hospital (despite us living a LONG way from Liverpool). He commenced it eighteen months after the initial appointment. This is entirely due to the demand on such programmes and the need for them. The programme demands total commitment with a set programme of gradually increasing exercise on a daily basis increasing each day. Additionally, there are meetings for both the patient and their partners/parents and a programme of cognitive behaviour therapy. Each intake has twelve patients and lasts for eighteen months(the meetings tail off after the initial six months). The range of patients varied wildly. The oldest in "our" group was 61,the youngest 15, everyone had different symptoms.and the range of severity of the problems encountered just proved that CFS is a vile and cruel condition.By the way, we had been told not to refer to CFS as ME anymore. However there was one very interesting thing we learnt about the condition. Whilst there are loads of illnesses that can act as a trigger for the condition there are specific personality types that are prone to this illness. Driven, high achieving individuals are far more likely to be affected. Additionally, people who either have unrealistic ideas about their workload in any field; people who "drive"themselves(quite a high proportion of sports people are affected)people who feel the need to prove themselves either to themselves or others. All these are typical. Often the condition is made worse by the need to "not give in" I feel that it is not helped by some of the guff written about the condition by some newspapers in particular. When things became really bad(after the initial consultation but before the programme) we decided that my husband was unable to carry on teaching. The random nature of the condition means you don't know when you will have a good or bad day. This was heartbreaking as the school had been wonderful to the extent of offering him various options ranging from full time teaching(as he was doing) to .5-one half day and everything in between to a leave of absence. He would have loved to stay there but had to admit that he couldn't continue. So he left to concentrate on getting better. During that time we managed financially by living on our savings. We had a house that was mine before we got married. It had been rented out and had been stood empty. We had it on the market with little joy and then had our first big stroke of luck as we had an offer on it(snatched their house off!).This combined with my (flexible thank goodness)work meant we managed without claiming a penny from anyone. It has been a rocky road, he developed various problems and I have seen the inside of more hospitals than I would ever want to. He had a serious eye condition and various oher nasties that seemed never ending. However, now he is back teaching and has been for a few years. He went back firstly as a mentor then did supply before taking the plunge back into full time teaching. He still has to be careful. His immune system will never be great, he has to have the flu injection each year and he takes ecchinacia on a regular basis. And as for me? Well I know so much more about human nature now. I no longer speak to my half sister and feel that I am a much more tolerant person. However, I am also rather cynical and a little bit pessimistic now-if I see a bright light at the end of a tunnel you can bet your life its a bl00dy big train comming for me!! CFS/ME does exist and its a life sapping and nasty condition I wouldn't wish on my worst enemy.
I have just read the review of MACHAIR1. Its fantastic. I was only diagnosed with Me....Chronic Fatigue Syndrome in September. Nothing about the illness was explained to me by my neurologist, I was sent home with Modafinil to take in the mornings. These are meant to help with the fatigue......which they did, for approx...2 weeks. I try and do things in moderation in an attempt to keep the fatigue at bay. Unfortunately, I also have MS, which has a lot of the ME symptoms. I can get up in the morning and feel like I haven't slept in weeks, I'm just soooo tired. Back to bed again. People who don't have this disease don't understand the pain and just how much our lives are affected on a daily basis. I personally feel I'm missing out on so much with my children and husband, as I'm bed so much...... Really, I'm sleeping my life away.... not a good thing to do! There are days that I feel great, then do things with the children, or maybe a school run, and ......... Yes, you guessed, back to bed again!
Myalgic Encephalomyelitis This review is about what it is like to live with M.E or as it is often called Chronic Fatigue Syndrome. Other labels are Post Viral Fatigue Syndrome and in the U.S it is called CFIDS. I am writing this to help to raise awareness of the condition and hopefully to dispel a few myths. It is my account in brief and my story, but the way it has changed my life is typical of those who are moderately affected. Firstly it is not just about being tired; if it was then a good night in bed would help. Fatigue is not the hallmark of the condition but it plays a part. Neither is it about being depressed although this may occur as part of just having a long term illness. I caught a viral infection from the Enteroviral group of viruses which are related to Polio in 1996. These viruses are thought to play a part in the development of M.E since they have become more prevalent following the eradication of Polio through vaccinations. This infection was also experienced by several others in my road and so it was a small cluster. The virus which was primarily like a gastric flu attacked the lining of my heart causing Pericarditis which landed me up in casualty. Sadly this was the start of my illness and the story begins after discharge from hospital. Things were odd. I had palpitations, sweating, a raised pulse, low body temperature, muscle twitches, loss of memory and the nights were forever because I couldn't sleep. I had difficulty sitting or standing for any length of time as it made my heart race. I had irritable bowel syndrome, and pain in joints in my shoulders, elbows, knees, and hips. I couldn't walk far and any exercise made me so much worse. After many hospital tests I was diagnosed with M.E or Post Viral Syndrome and this has been with me for the last 12 years. For most people the symptoms they have fit into categories and they can wax and wane. However they are all made worse by overexertion physically and to a lesser though not insignificant part mental overwork The Symptoms These may include: Overwhelming and Persistent Fatigue This is always there but as the initial attack subsides and you get into some form of remission there is a delay to the symptoms, so doing too much exercise is going to cause an increase in fatigue and other symptoms 24 to 36 hours later. This delayed reaction is typical of the condition. Sore throats and flu like symptoms I had these a lot at the beginning and I always know when I am going into a relapse because I get a very sore throat and my legs ache like I have the flu. Pain This is one of the worst symptoms and it can manifest itself as aching in the muscles and joints, pins and needles, or muscle twitching. I had this a lot at the beginning and my muscles would contract all by themselves. Sleep This is horrid. You either crash out for hours on end and wake up in a pool of sweat shattered and exhausted or you can't sleep at all. I often have horrific nightmares from which I wake drenched in sweat with my heart racing. Mental problems When I first became ill I realized I had forgotten most of the words in the dictionary. This wasn't apparent at first because I was so ill I couldn't read- even the TV looked blurred and words would just move up and down on the page. After 4 years I decided I wouldn't be able to return to nursing so I got a job as a Teaching Assistant in a school for a few months. I suddenly noticed I needed a dictionary to spell basic words. This has come back now but it has been a long road. I have had to work from home now as keeping a job which involves set times and routines is too exhausting. Digestive problems These have been for me one of my worst symptoms. I have had dreadful irritable bowel and in relapses bland food with no roughage is all I can tolerate. Severely affected people often have to be hospitalized and tube fed, it can get very serious. Autonomic nervous symptoms For me these have been the worst. My temperature is always low and I can't tolerate extremes of heat at all. The illness causes dreadful night sweats and palpitations, and I have bouts of severe vertigo where the room spins. Latest research is showing that a virus may well have damaged the autonomic nervous system. Most patients including myself have great difficulty standing or sitting for any length of time as it causes the pulse to rise and serious changes in blood pressure called Orthostatic Intolerance. This is worse if you get hot so I have to be really careful to drink a lot in hot weather and to stay in the shade. Finally there is nearly always intolerance to alcohol. Most people with M.E can either drink nothing or tiny amounts because it makes them very ill indeed. On a day to day basis I have difficulty holding my hands above my head so hanging out washing is exhausting. I don't wear jewellery as it is too heavy. I can only have one sensory input at once so I can't have the TV on while eating or try to read if someone has music playing. So with all this you may be thinking M.E is more than just being tired and you would be right. The tragedy is that many of the sufferers are not middle aged mums like me but teenagers and young adults with all their lives before them. I was 36 when I was diagnosed and by this stage I had given birth to 4 wonderful children. It was kind to me in that my career and family had gone the way I wanted it to- just not able to continue with the same career as before. What I would like to do is to list a few websites and books which have helped me more than anything. I have three shelves of books collected over 12 years but some are more useful than others. If I find any more in due course I will update this article. My top 7 1. "Better Recovery From Viral Illnesses" by Darrel Ho Yen This book is the best one out there. Older copies are available from libraries but there is no point is getting anything older than the 4th edition as the advice has changed in the book. Earlier editions focused on the conservation of physical energy but later research showed mental energy was also playing a part so get hold of the 4th edition. He has just produced a 5th edition which you may be able to order from the library or direct. www.dodonabooks.co.uk The 5th edition is expensive I believe it is £28 so try the library. Ho Yen is a microbiologist and an expert in viral illnesses and has had great success in stabilizing many M.E patients. 2 "The Disease of a Thousand Names". By David Bell Again out of print but good from libraries and secondhand bookshops like Abe this is a superb guide to the disease. www.abebooks.co.uk 3 Also by David Bell "Faces of CFS"- this is a great book you can either buy it secondhand or you can download it free from his website at; www.davidsbell.com Again David is an expert in CFS having been the GP in Lyndonville New York during an outbreak they had there and this book is dedicated to the case histories of these patients. 4 "Encephalomyelitis and Post Viral Fatigue States" by Melvin Ramsay, again this is out of print but you can get it in libraries or secondhand. 5 "Chronic fatigue" by Erica Verrillo and Lauren Gellman a -superb book. This should be available to order secondhand. 6 "Living with Me" by Charles Shepherd. This is the one you find most in the shops. 7 The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (Edited by Byron Hyde, M.D. - Nightingale Research Foundation, Ottawa, Canada).If you visit the website www.nightingale.ca which is the home of the Canadian ME Research Foundation and click on contact them. They will send details as to how this book can be obtained more cheaply in the UK. It is the best book I have found and it contains papers and articles from all the world experts. Proceeds from this book go to help young people with M.E. It is a very thick heavy book and you can also request it by special order from the library. Websites I recommend are 1. Action for M.E www.afme.org.uk 2. Tymes Trust www.tymestrust.org -this is a wonderful charity especially set up by an M.E sufferer herself to help children- it is superb. 3.Hummingbird -www.ahummingbirdsguide.com- this website is the most amazing one I have found set up by Jodi Bassett who is a 31 year old Australian sufferer who is severely affected. She has many videos on You Tube but the most informative one to understand the symptoms can be seen at uk.youtube.com/watch?v=QCdcAGAHlvg 4. Foggy Friends www.foggyfriends.org If you have M.E and are feeling lonely and isolated you can contact others in the same boat and this is a wonderful forum set up by 2 dedicated suffers. Living with this disease is hard, the symptoms are life altering, but the level of misconceptions in the community are putting intolerable pressures on sufferers. These misconceptions were primarily put out by the media who named the condition "Yuppie Flu" or "Malingers Excuse." Although the latest research is changing this in the medical world it is still difficult to change the attitudes of so many who were influenced by these descriptions. It is recognized by the World Health Organization as a neurological condition It is not curable but some may go into a form of remission. Symptoms can be controlled or helped but many medications have side effects The best treatment is rest and pacing. It is estimated that there are up to 250,000 people with M.E. in the UK. Most of them are isolated and misunderstood. In the same way as Multiple Sclerosis was once called "Women's Hysteria" I hope that M.E will be able to lose the dreadful names associated with it. The sufferers are alone and some end their lives each year through suicide. I hope this has given help to those who are suffering and information to those who look on so that the illness will be recognized for what it is and for the damage it is doing to so many young lives. Also published on Ciao under the user name Violet1278.
Imagine my supprise when l found a topic on ME/CFS on dooyoo. Its true that many people do not understand this illness and as a long term sufferer this is very very very frustrating indeed. The trouble with CFS is that the symptoms are so confusing and mind baffling, symptoms can include problems with cognitive functioning, headaches, reacurring infections, digestive problems, muscle weakness, muscle pain, extremely low energy, general weakness, insomnia, depression (often thought to be a result on the illness, rather than a symptom). Every case is different. Many people believe that ME/CFS is just a general name for many different illnesses. Of course we do not know.... because not enough research has been done. Probably because its an illness that hasnt been taken seriously!! What we do know is that its a very disabling condition that needs to be taken seriously! I was about 13 when l first got ill, and back then there was even less understanding about the illness. It started as several reacurring infections. Im sure you all remeber when youve been so ill with flu that you could barely move, well this is how it started only l never recovered back to my former health. So l lost out on a lot of my education because of this, losing a lot of time from school. Many young and old people suffer with ME. It is evident that lack of understanding and not recieving a quick diagnosis prolongs the illness. Although there is no known cure, people do get better. Many people believe that CFS is depression, or an illness for the lazy. This demonstrates the lack of understanding that we have on the illness. Of course there may be people that use any illness for an excuse, but for those genuine ones amongst us its important that its taken seriously. Many people with ME find they are extremely sensitive to stress, and the lack of support they recieve with their illness only worsens their condition. It is important to try to keep doing things with the illness but pacing is one of the most useful tools of therapy. Over exertion can lead to many sufferers relapsing. There are obviously different levels of the illness, whilst some sufferers have to be tube fed, others may be able to lead a relatively normal life. Whilst sufferers may be able to manage some activity on one day on other days they may not be able to manage getting out of bed. (For the non sufferer this is confusing). Its like living on a batterys energy, you have to use resources sparingly and if you do too much you end up with a flat battery which can take days, weeks, months, even years to recover from! For the future l would like to see more research, and doctors taking it seriously (it is starting to happen) then maybe everyone would take it seriously, and more people could be allowed the time to recover!!!
I myself suffer from ME, and have done for just over a year now. I was diagnosed not too long ago. Here is my story (I apologize at the length, but it is very detailed) "We're all in this together.." we finished singing for what felt like the millionth time that night. Finally we were sent home from what was the most grueling rehearsal of them all. I opened the car door and fell onto the front passenger seat, not saying a word. I felt dizzy and nauseous, my head was pounding as my mum proceeded to ask what was wrong and why my eyes were rolling. "I'm tired," I replied. That was the end of our conversation, I got home and passed out in my bed, hoping a good nights sleep would solve my problem. Unfortunately, this wasn't the case. I was eventually woken at around midday, apparently my parents had been trying to wake me since 7am, I couldn't recall it. I rested the whole day, saving up my energy for the filming of 'High School Musical' that night - my drama group would be performing the north east premiere of it that week - the rest didn't do me any good though, neither did all the mars bars and lucozade I was force fed incase of low blood sugar. Still my eyes rolled, my head pounded and my muscles ached. "Exhaustion," I was told. "Low blood sugar," I was told. I went with it and pulled myself through the performance trying not to let anyone down by passing out on stage, that is how I felt afterall. Another night ended with me feeling low and going straight to bed, not only did I feel terrible, but it was less that 24 hours until opening night and I could barely speak I was so dizzy. As I took another day off school to visit the doctor, he told me I was 'burning the candle at both ends'. I guess I was, I was just back from Germany doing a show there, and I'd done a show in Aberdeen a couple weeks back. My crippling muscle pain was getting worse, my nausea was getting worse, everything was getting worse. I couldn't open my eyes without seeing stars, but I carried on through the day and made it through the opening night - it was all a blur to me, I couldn't enjoy it at all. The next day, Thursday, I knew something wasn't right, during the interval of the show, I was found passed out in the corridor. I was taken downstairs for air, I was in absolute agony and could barely see, I felt incredibly sick, but I told the directors I was okay and carried on. I was there to perform, I couldn't only do half of it. Again, the rest of the week was a blur, one long painful blur. Until one night (a Monday if I remember correctly), I just couldn't cope, it was 1am and I was still in my living room screaming and crying with absolute pain, I wasn't able to move. It was like nothing I had ever experienced before. My mum called in an on call doctor who admitted me to hospital straight away. I guess you could say this was the start of one hell of a bumpy ride. As if being a 14 year old girl going to hospital on her own for the first time wasn't bad enough, I was asked a million and one questions. Five times. Remember, this was about 3-4am, I was in excruciating pain and wanted to sleep my little heart out, but instead I was asked the same questions five times by five different people, silly things like my name, age, DOB, if I was pregnant etc. Seriously though, questions that could wait until the morning. At least I had my own room, a nice little cold dark room, it was perfect. I was always red hot and the light was bothering me - which only led the doctors to think I had meningitis. That day was a never ending sea of tests and x-rays. After one x-ray, I was sitting in the wheelchair thing they gave me to be wheeled about in, when all of a sudden my eyes went black with little stars, I felt the sudden urge to vomit and my hearing went crazy. The next thing I know, a nurse had wheeled me to a window to get some air after me vomiting all over the place. Nice. That led me to get an extremely painful needle (adding to my list of very painful things I never want to experience again) to stop me from throwing up. Then finally I got some time to myself in my dinky little room. Being alone was a luxury I wasn't getting for long, as around an hour later, I was moved to a ward with 5 other people. 5 old aged pensioners. 5 old aged pensioners who always had the heating and the lights on. Not the ideal room for a 14 year old with a temperature and problems with the lights, but I was stuck there, what was I to do? The first night in the shared ward was hell. When my parents were leaving after visiting hours, I cried like a baby. I clung to them begging to take me home, I couldn't stand to be in what I considered the worst place to be any longer. To my disappointment I wasn't taken home that night. I cried for about an hour afterwards, with the curtains pulled around my bed for some privacy. The night shift nurses kept offering me toast and tea, the more I refused, the more they persisted, how hard is it to grasp the fact that I don't want cold, soggy toast and lukewarm tea at 11pm? Eventually, after alot of tossing and turning (painfully, may I add) I eventually dozed off, it was difficult, even though I was so exhausted, but I managed. Only to be awoken again at 6am by a nurse asking me if she could make my bed, I thought if someone asked a question you got an option of more than one answer, not here, the only answer was 'okay, on you go'. So there I was sitting in a ripped up leather chair watching some cranky old nurse making my bed at 6am - I had never felt so exhausted and un-energised in my life. She moved onto the bed of the old lady next to me, as I went to lay back on my bed. This clearly wasn't allowed in 'The Ward of No Air Conditioning, No darkness, No Silence and Now No Lying On Your Own Bed' as the crazy, cranky nurse yelled at me. Didn't make my experience anymore fun. If only she knew I clambered back into bed and conked out as soon as she left the room. But yet again I was awoken, it was around 9am and I was not impressed, they woke me up for soggy rice krispies, no thanks, I never eat breakfast anyway, why would I want that? I am aware I sound like a spoilt brat here, but come on, I was in there because I was sleeping so much and in so much pain, not to be woken at ridiculous times with people making my bed and shoving month old soggy rice krispies down my throat. Anyway, I got through the morning by reading books (not a frequent activity in my life, but I did it anyway). I got through the afternoon by, well, by being in complete agony. It wasn't all from the muscles in my limbs this time, it was lower back now too. This was for a completely different reason though...a lumbar puncture caused this pain. For those of you unaware of what a lumbar puncture, it's a really long needle that gets inserted into your lower back and it sucks some of the fluid that gets carried from your brain through your spinal cords out, this gets tested to find our about your brain activity (I think). Anyway, it sounds simple, but boy it's painful, it's actually one of the most painful needles you can get. I was advised to lie down for at least 2 hours afterwards as the loss of fluid could have caused great pressure in my brain, resulting in more problems which wouldn't have been fun for me. It was my excuse for the short nap I had that afternoon. My mum came to visit me at around 2pm and had brought some work from school with her. That gave me something to work on while I was in hell (my new name for hospital). Well something to work on while I wasn't teaching people how to turn on the TV, it's magic what a power button can do you know. The rest of the day was spent doing some Biology work and napping, followed by a much anticipated visit from my parents.YAY for familiar faces. They weren't there for long though, and before I knew it, I was curled up in bed nodding off. The next morning was a repeat of the rubbish I suffered the morning before - I still didn't appreciate being kicked out of bed so someone could make it, nice gesture but seriously, at 6am? I knew that it would be a really long day, I got a couple of blood tests and then I just had to wait, and wait, and wait. I wasn't allowed to be discharged from hospital until I had all of my test results, which I obviously wouldn't receive the same day as the tests were done, so I prepared myself for a day of lying in bed watching some television. Well at least the extra strong painkillers I was taking were working slightly - the pain had subsided from excruciating to really painful. It's a start I guess. That evening was completely awful, lying in the uncomfortable, tiny little bed I was completely unable to move. The pain was unreal. I lay on my back for hours trying to blank it out, the more I tried, the worse I felt. The pain wasn't the only problem though, my eyes were blurring and my head was pounding due to being completely and utterly exhausted, I needed sleep and i wasn't getting any in this hell - hole. If it wasn't the pain in my limbs keeping me awake, it would be the old ladies in the beds surrounding mine yelling for nurses, bells ringing, lights flashing or nurses offering me more of that dreaded toast and tea. I've never known anyone who has toast and tea at midnight, this was like a whole other world. Eventually I drifted off into my well deserved deep sleep. HOME TIME! Waking up the next morning was an amazing feeling, kind of, I still felt as terrible as I had done for the previous couple of weeks, but I had woken up that day knowing that I was going home within the next few hours. The doctors did their rounds early that morning, my test results? Completely clear. So far, I looked like a lazy 14 year old who didn't want to go school and was faking an illness. I knew on my own that something was seriously wrong, even if no one could find out what it was. My mum came to the hospital at around 11am to pick me up, we waited a few hours for the doctors discharge letter and we were told if we had anymore problems then i would have to call up my GP. We were back to square one and it was terribly frustrating for me and my family. I was able to drag myself into school the next day, something I hadn't done in a few weeks. It was all questions, questions, questions, but only because people were concerned. Explaining the same thing over and over was not my idea of fun, but it had to be done. I left school that day feeling completely drained of all my energy and in utter agony, the feeling is kind of unexplainable. You can guess what I did when I got home - slept. I slept from 4.15pm until roughly 2pm the next day, I just couldn't be woken. When I eventually got up, I was told of how my parents had attempted to wake me up around 30 times, why was I so unaware of this? What was so wrong with me? I'd never had sleep troubles before, and now all this at once. These next few weeks all merged into one. It was a never ending stream of sleeping and pain. I would cry my heart out when my parents attempted to drag me out of bed thinking I was being lazy because the doctors had found nothing. All I wanted to do was sleep, when I slept I could feel nothing and if I'm completely honest, within those months, I was most happy when I was asleep because no one was accusing me of faking illnesses and I was unaware of the pain. I guess you could say I was in a sort of comatose state when I slept, in my own little world. I was still seeing doctors regularly during this time, up to 4 a week depending on my state, and I was taking 11 pills a day to try and banish the pain and the exhaustion. They worked on some levels and by late October, I had managed to get back into school regularly. My concentration was all off and I was falling asleep in classes, but I was so happy to have managed to drag myself there and somehow cope with it. I obviously had the odd tremendously awful days where my sight would go funny and I'd be ready to pass out or vomit with the exhaustion and pain. All was looking up, but I took a funny turn at the start of November and it set me right back to sleeping for 20 hours a day without stirring. The more I think about it, I have come to realise that November was the worst month of all. I had been dropped from two of classes at school, my prelims were coming up fast and I was getting worse by the day with no explanation to what was going on. Not only that but my family was arguing a whole lot too, I was accused of faking an illness to get out of school. As if it wasn't hard enough to cope with, but my own family didn't even believe I was genuinely ill. Prelim time arrived, two weeks of exams that I needed to do well in. They were my safety net, just incase I continued to go downhill in the health department. I was determined to pass, I studied as hard as I could, which was difficult due to lack of concentration and always being exhausted and dizzy, but I put everything I could into it. I went into the exam rooms more nervous than I've ever experienced, I kept wondering if I'd make it through the exam. I managed a few of them, some of them I was unconscious during so didn't make it. Needless to say, I didn't do well in the prelims, which upset me alot. Although I was kind of expecting not to do well. By the middle of December I was taken off of the pills, by my own request. They were no longer working and I felt they were doing me more harm than good, 11 pills a day couldn't be that great for a 14 year old liver. They were also causing me severe stomach pains and I was really against taking bucket loads of pills for a problem that was still yet to be diagnosed. The doctor who I was dealing with the most took me off of them straight away. Ever since then I have had no medication to help me through it, unless the odd Cuprofen here and there counts? I got a referral letter through the post from my doctor sometime in December, referring me to a Rheumatologist on the 7th of January...the day I was due back to school. The rest of my Christmas holidays were spent relaxing and resting, mainly trying to get myself better. I may or may not have mentioned, but all the way through this hell, people had been suggesting illnesses I could have. "It sounds like Glandular Fever," someone would say. "Maybe it's one of those rare cases of Meningitis," someone else would tell us. Both were ruled out. Anyway, by the 7th of January I was all ready to go see if the Rheumatologist had any ideas as to what was going on with the muscle pain and awkward temperature (feeling cold to the touch, but hot inside). After going through what felt like an army medical and fitness check, he diagnosed the crazy temperatures to Reynaud's Disease (circulation problems) and the muscle pain to Joint Hyper-Mobility (overly flexible joints which loosen the ligaments and stretch the muscles causing severe pain and often collapse). It was all starting to become clear to me now. He told me he couldn't diagnose why I was so exhausted and sleepy all the time, so he referred me to the Neurologist to see what see could do. I was praying that it was nothing seriously life threatening I had, this was taking so long to get to the bottom of and my next appointment wasn't until April! Within the time of the Rheumatology and Neurology appointments, we had no contact with doctors what-so-ever. We were on our own, I guess it made it somewhat easier to live with, knowing what the cause was. What's better is that the pain became less and less over time and all I had to worry about was the constant sleeping and dizziness. Between January and April, I was in school alot more than I was during the previous terms, I would go in at break time or lunch time most days, if I was lucky, everyday. That was a big improvement from never going in at all. As the Neurology appointment came closer, I got really excited, I thought this would be where I found out what had been wrong with me for the past 7 months. At the appointment, I answered all the same questions and went through all of the same reflex tests etc, that I'd done a million times before. We left with nothing but a hospital admission letter. I had to go in for more tests and for them to keep an eye on my sleeping patterns. Once again I was going to hell, I was just hopeful that a diagnosis would be made. To be honest with you, I don't really remember much about this hospital visit, I tried to blank it all out. I remember three things vividly though, the first being the crazy old naked man running around the corridors, I felt bad for the guy though, he had problems. The next was waking up one day with a needle hanging out my arm and some random nurse taking blood tests, I wish I could have blanked those both out. The last was my psychology session..I wasn't impressed about seeing a psychologist, but he made the final diagnosis, along with all my test results, I was finally diagnosed (after 8 months of hell) as to having ME (Myalgic Encephalopathy)/CFS (Chronic Fatigue Syndrome)/PVFS (Post Viral Fatigue Syndrome). We then found out that the diagnosis took to long as ME is diagnosed by process of elimination. I was let out of hospital the next day and that's the last we've heard from them. Ever since the diagnosis, of course I have been able to cope a bit better, with knowing what is causing the problem, what doesn't help is that some people do not class it as a real problem - they think it is laziness. Seriously, this is not the case, I am not a lazy person what-so-ever, I cannot help what is happening to me and it's hard enough to live with without people claiming that I'm just being lazy. The day after i got home from the hospital, I went onto the internet and did some research on ME, i'd heard of it before, but I had no idea what it was and the hospital didn't give us any information either. I eventually managed to find out more about ME and for the past few months, I have been coping quite well, I now see a psychotherapist weekly to help me through it, and may also be going to a clinic in London for some treatment.
Chronic Fatigue Syndrome (CFS) is a seriously debilitating disease whose effects are compounded by the fact that medical science has yet to reach agreement on the actual causes of the illness which in turn makes treatment more difficult. Having had an ex-partner who was diagnosed with CFS having displayed many of the symptoms of it I do know that there are long term effects of the illness both from a physical and a psychological view point. Not least is the perception by some people in society that is just one of those made up illnesses by the medical fraternity and the you often hear comments like "Load of rubbish, this was not around in my day". Such attitudes are naïve and unhelpful after all medical science is constantly discovering new diseases and also the cure for the illnesses that come from them. There are those who suspect that the causes are viral however the majority of doctors believe a combination of both psychological and physical causes may lie at the heart of the illness. There is evidence to suggest that there may be a genetic factor at play as the problem is more prevalent in some families however there is also evidence to suggest that some viral infections that weaken the bodies' immune system are likely to trigger the illness especially if combined with bouts of depression or stress. So what are the symptoms to look out for? Fatigue Well the first one is pretty obvious given that it is in the title of the illness however the important factor here is that the fatigue felt is persistent over a period of time rather than the fatigue felt after a hard work out. My ex-partner used to find that even after sleep and rest they did not feel refreshed instead they woke up feeling tired, not only that there was a general lethargy about them and she was unable to do things that a few months earlier would not have been a problem. This fatigue is extremely hard to identify as there could be many other causes linked to it such as depression or just physical exhaustion. In addition there is the added pressure from society to self heal in these matter, to put on a brave face and just get on with it, however in the case of suspected CFS it s important to get medical help as soon as possible so that tests can be carried out to eliminate other potential causes of the fatigue. Mental Agility A potential symptom of CFS is also a loss of mental agility, sufferers can experience memory problems especially with short term memory loss and can also find it hard to concentrate on things particularly while at work. This can have serious consequences on careers and how competent someone is viewed in their job especially where an attention to detail is a large requirement of the job. In extreme cases this can also manifest itself with the individual struggling to organise a thought chain and even develop problems verbalising these thoughts. Sleep Patterns With CFS sleep patterns can be disturbed and these can result in either difficulty getting to sleep at night or when asleep finding yourself waking up a number of times in the night. These sleep disorders serve to compound the sense of sleep depravation and lack of energy and also stimulate frustration and ultimately depression for the sufferer. Physical and Psychological Symptoms Certainly My ex-partner seemed to suffer from a lot more physical and psychological ailments as a result of CFS, the most disturbing of these were panic attacks the onset of which were impossible to predict, they were sometimes precipitated by dizziness and sweating but even so they were very upsetting especially as from an outsiders perspective there were not any physical outward signs to help you identify what was happening. Physically she tended to suffer from a lot of sore throats and stomach pain that could be quite acute at times. Reading up on the symptoms once CFS was suggested by a doctor we found that all of these are potential symptoms of the illness. In addition to these some individuals have suffered from allergies and intolerance to some foods as well as an increased sensitivity to light or noise. As you will have come to understand many of the symptoms listed above are not all that uncommon at some point in peoples lives however it is the combination of a number of them with the overlaying feelings of severe persistent fatigue which can serve to set alarm bells ringing. Thanks for reading and rating my review.
I don't personally suffer from ME, but my mother has for about 10 years now. I always remember when she was diagnosed, I was only about 11 so didn't completely understand what was happening. I'd never heard about ME/ Chronic fatigue before, and I don't think its publicised as much as it should be. So, here's my Mothers story and abit about ME :) It all began when we'd been shopping for my brothers birthday presents and were rushing back to the car as we were running late. It was a uneven surface and it was slippery because had been raining, as we were running back to car, my Mum suddenly slipped over, slicing her hand open and hurting her knee. For afew weeks after that, she felt constantly tired and exhausted, even though she had been resting. We now know that a fall or a flu-like illness can trigger ME in some cases. She went through all the procedures, blood-tests, numerous doctors and hospital appointments, etc. All this time I wasn't aware of what was happening, my family basically told me nothing saying it was just a "check-up". Anyway, they eventually diagnosed her with ME. It must have been the first time I'd ever seen my Mum properly cry infront of me, it was so awkward. She was driving me home from a friends, just saying over and over again "I can't believe this is happening". I finally, about a week later heard her telling my Grandad. They never actually told me, face to face until I demanded they told me really. We still didn't know very much about ME, as the doctors were quite vague. She started to go to treatment sessions at a special clinic in our local hospital, I'm not quite sure what this was. They gave her information on diets while help, exercises and put her in touch with people who also had ME, this helped her very much. But sadly, after about 2 months the Government stopped funding for the clinic so it was forced to shut down. So now, she has no treatment and no help. The only thing she had to help her, was some sleeping pills and strong painkillers perscribed by our doctor Over the years, she slowly became unrecognisable compared to how she used to be. She quite often forgets our names, numbers, address and even her name sometimes. On holidays, we couldn't even walk along the beach without her needing to sit down due to being so exhausted. She used to walk everywhere and did plenty of exercise, but now she is reliant on her car. Due to not exercising, she also put on some weight which didn't help her self-esteem. So, it seemed like my Mum faced a life of misery and suffering really. But a couple of years ago, she heard about a local ME Support group. She was abit uncertain at first, but went along to the first meeting for a trial. She came back after the first session saying how great it was and how nice it was to speak to people in same situations. It was the first time we'd seen her properly happy and partly back to her old self. She now goes every 2 weeks, and has made lots of friends. Seeing as when she was diagnosed, all her old friends seemed to disappear, its great that she now has people who understand her and can help around all the time. I know there is hardly any chance she's ever going to get better, but atleast she has happiness back in her life. She lost her job, her friends, her health and her life. But through support groups, shes slowly getting her life back. She also now gets Disability allowance every week, so she can hire cleaning help etc. And has a disabled badge, which has helped enormously. It has also taken pressure off my Dad, who was the only 1 bringing in an income. I don't see how anyone can doubt the existence of ME, or say that it is just in the persons mind. I've seen what it does to a person, emotionally and physically, and there is no chance that could just be "in their mind". In my opinion, ME is a horrific illness. One month your living your life to the full, the next you have no idea what is going to happen. Hundreds of throusands of people are affected by ME. Some minor cases, some very severe. However, severe though ME is just an unfair illness, destroying some peoples lives. There is hope for people like my Mum, changing diet helps. But I think the main thing, which has helped her through all this was support from people. (Sounds cheesy, but is the truth) Here's some useful sites if you want more detailed info about ME : www.meassociation.org.uk www.afme.org.uk/ www.meresearch.org.uk/information/whatisme
DIARY This review contains an extract from my diary from three years ago when I first became ill. After a series of tests to eliminate possible causes I was eventually diagnosed with M.E. or, as it is known nowadays, Chronic Fatigue Syndrome. When I told friends and work colleagues what was wrong with me, some of them were scathing and very unsympathetic. M.E? Isnt that what they used to call Yuppy Flu? they would remark. Others would simply Uh, I am tired all the time as well, but I just have to get on with it. When a neighbour asked why I was off work it was the final straw. Her 3 month old baby was crying because she was tired and the mother laughingly said Oh dear, I think she must have chronic fatigue syndrome too. How hurtful that was, but then this is one of the most misunderstood illnesses there are. If you have managed to read so far, then you probably have an interest in M.E. either because you or someone you know is a sufferer. Therefore, before you read the diary excerpts, let me just give you something positive it has been said that it takes at least two years to recover from this illness (it can take a lot longer). It is now almost three years since I was first diagnosed and it is only in recent weeks that I have realised how much better I am. So if you are in the black tunnel of despair with this illness at the moment, then do take heart that you will recover eventually! Now read the diary excerpts: February: pain in legs very bad, taking painkillers every 4 hours and still not improving. No energy and constantly feel drained. These have been going on for several weeks now, thought I was starting with flu, but no. 17th 26th Pain in legs not as bad, painkillers are helping, but still no energy and feel quite depressed, weepy at times. Not sleeping much, waking up at three hourly intervals. Started having pains down face and in left ear. Fingers and toes sometimes numb and tingling lasting from a few minutes to a few hours. Sense of smell affected sensitive to strong smells. Feeling of wanting to shut myself away from everyone and just have quiet, away from any noise. 27th Feb: Had a bath this morning, so exhausted I had to sit down to dry myself. I have never felt like this before, how can having a bath wear me out so much! 2nd March Weepy all day. Felt very depressed. Tired out. Left side of face aching. 3rd March Saw GP this morning, exhausted when I got home, only out of the house just over an hour. Rested all day, no energy to do anything. Started anti depressants, doctor thinks they might lift my mood. 4th March Tried to dust and vacuum lounge but had to keep sitting down and then had to rest afterwards. So exhausted. Even getting a shower this morning drained me. Pains in all my joints today. 5th March Felt better when I got up. Maybe I am just exhausted, decided to go for my hair cutting. Thought it might make me feel better. Then went to supermarket. Felt dreadful, the sheer size of the place was too daunting to face so I got the essentials and went home. Dreadful headache. Put shopping away then had to sit down. Almost crawled into bed at 3 pm, so tired. Couldnt sleep. Got up at 5 pm. Wanted peace and quiet all evening. An effort even to speak to family. Went back to bed 9 pm. Awake at 1 am. Woke every two to three hours through night. 6th March Exhausted all day. Got up 7.30 am. Had breakfast then went back to bed. In bed most of day, felt completely drained. Pains in back and down left side from my back right down to foot. Left side of face tingling. Family cooked meal for me, appetite poor. Too drained to hold conversation. Went to bed 10.30 pm Woke every 2/3 hours in night. 7th March Stayed at home all day by myself. Felt as if I needed peace and quiet with no noise whatsoever, even from tv. No concentration to read or do anything. Didnt sleep well again. 8th March Hardly slept all night. Drove into village this afternoon, felt as if I needed to get out in fresh air. Only went to two shops, worn out with effort. Slept for an hour later. Pain in back/hip worse. Took painkillers every 4 hours to relieve pain. Side of face and ear also aching tonight. Went to bed at 10 pm. The above is just a brief extract from the early days of my illness. I eventually became too exhausted to even fill in my diary, something I had always done for years. I couldnt understand why I felt so tired and drained all the time. True, looking after a house and family and following a demanding career are tiring, there is no doubt, but this was a different kind of tiredness. I can only describe this tiredness as that total exhaustion you feel after giving birth to a baby, your body feels worn out any mothers will identify with this. Well that is what I felt like, except it had been several years since I had given birth to my children, so just what was wrong with me? My joints ached, particularly my legs, I couldnt sleep and my concentration had gone. Looking back this hadnt happened overnight, it had been coming on for several years if I am honest, but I just put any of the symptoms down to being a modern mum trying to do too much at once. About a year earlier I had to have major surgery and rushed back to work as soon as my doctor let me, my boss was not very sympathetic and the phased return never materialised. But hey I was well again! My op had sorted out those nasty womens problems, I was ready to start life all over again. But my body thought differently! I had put it through enough and it tried to make me slow down, but did I? No of course not, working mums cant take time off can they! So what happened? My body decided if I wouldnt slow down, it would take charge and MAKE me slow down, and in the end I had no choice. It took several weeks for my GP to determine there was nothing seriously wrong with me. I had been worried when the tingling started as my aunt had suffered from MS (Multiple Sclerosis) so I had tests for that. I had other tests blood tests, x rays. They all came back clear. So after the process of elimination I was diagnosed with CFS and my doctor gave me a sick note for three months. Needless to say my boss was not happy and threatened me (yes, that is the word, threatened) that the company would insist I have a medical. Fine, maybe they would find what was wrong with me. I had the medical and the company doctor was disgusted at the lack of understanding from my boss and colleagues, he agreed I was suffering from M.E./CFS. To cut a long story short, I underwent a course of cognitive therapy which taught me how to manage my condition. I learnt to pace myself and to conserve my energy. I was told that if I had been a car they would have replaced my batteries as the energy levels were low and needed recharging. A simple analogy, but one that people understood. In other words, I had burnt myself out. It is now almost three years since I first started being ill. In the early days I couldnt go anywhere or arrange anything in advance. I had to take each day as it came, not knowing how I would feel. Thankfully I have now either learnt how to take control of my condition or there is a very definite improvement. To sufferers of M.E. take heart that you will get better. But to all those people who are cynical and dont believe such a condition exists, then I would like to say that once I was like that, but now I know differently. And to all those working parents and anyone else who feels drained and exhausted all the time, I would like to say take time to listen to what your body is telling you. I didnt and it was too late. M.E. can affect anyone of any age at any time. Medical opinion differs as to the causes and research is ongoing, but believe me, it is a very real illness.
Why does everyone assume that I am lazy or can't be bothered to do things? If only they knew what I would like to do, but don't do because I am not able, not just because I don't want to. I'd love to be able to walk for miles, go swimming, have a night out, do my own shopping, go to work, drive my car or clean my house. None of theses things are special they are every day things to most people, but for me they take a lot of effort and cannot be managed every day. People do not seem to be able to accept that I am ill and not able to do the every day things they can do. If I try to lead a 'normal' life, eg. walking, shopping, cleaning, I suffer with fatigue, pain, dizziness, headaches, sore throat and many other symptoms too numerous to list. I need regular rest and to go to bed early, this is not being lazy it is how I survive. I am not a lazy person, before I was ill I never sat still!! I would like nothing more than to be able to keep busy all day long, it is so boring not being able to do things and is very frustrating. I watch the dust piling up and the ironing that needs doing. I hope for a good day to get things done, but know once I do them I will feel ill again afterwards. People do not realise when they see my un-cleaned house or pots waiting to be washed, that I do not leave them because I?d rather be doing something else, I have to leave it because I do not have the energy tackle it. When I tell people I do not work, they assume it is my choice, that I want to sit about at home all and they envy me. If only they knew how desperate I am to work, to earn some money, make some friends and feel I can do something. I am not lazy. I just have ME. ~ What Is M.E ~ M.E stands for Myalgic Encephalomyelitis. Myalgic refers to symptoms of the muscles such as fatigue, pain and twitching and Encephalomyelitis refers to the symptoms that affect the brain, s uch as impaired concentration, balance problems and poor memory. The illness is classed as a disease of the nervous system, but it affects most systems in the body in some way. Other names for the illness include CFS (Chronic Fatigue Syndrome) and PVFS (Post Viral Fatigue Syndrome). It is thought that M.E affects over 150,000 people in the UK alone. There is no definite known cause for the disease, but there are many factors that can pre-dispose a person to developing M.E. Infections, immunisations, stressful life events, physical injury and environmental toxics seem to be the main possible causes that have been identified. Pre-disposing factors include; gender, more women have M.E than men; other family members with M.E, there are many families who have several M.E sufferers in them; personality, people who are highly strung, or perfectionists and put themselves under a lot of pressure; and previous disorders such as Fibromyalgia or Irritable Bowel Syndrome. ~ Symptoms ~ There are many symptoms of M.E, far too many to list. Sufferers vary in what symptoms they have, but there are several keys things that seem to affect all sufferers though in varying degrees: ~ Profound lasting fatigue, not eased by rest ~ Severe muscle and joint pain ~ Persistent headaches ~ Impaired memory or concentration ~ Sore throat and enlarged lymph nodes ~ Abdominal pain and nausea ~ Disturbed sleep patterns ~ Fever and chills, poor temperature regulation ~ Sensitivity to light and noise. M.E affects people to varying degrees; the ability scale below was devised by Jill Moss (1995). My ability is currently around 40% on the scale. ~ FULLY RECOVERED ~ 100% No symptoms even following physical or mental activity. Able to study and work full time without difficulty, plus enjoy a social life. ~ VIRTUALLY RECOVERED ~ 95% No symptoms at rest. Mild symptoms following physical or menta l activity - tire rather easily but fully recovered next day. Able to study or work full time without difficulty but a slight restriction on social life. ~ MILDLY AFFECTED ~ 90% No symptoms at rest. Mild symptoms following physical or mental activity - tire easily. Study/work full time with some difficulty. Social life rather restricted with gradual recovery over 2/3 days. 80% Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time study at school or college difficult, especially if it is a crowded, noisy environment. Home tuition or part-time study without difficulty. Full time work in a busy environment is difficult, with little social life possible. 70% Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time study at school/college is very tiring, and may be restricting social life. Part time work may be possible for a few hours in the day. With careful pacing out of activities and rest periods, one may discover windows of time during the day when one feels significantly better. Gentle walking or swimming can be beneficial. ~ MODERATELY AFFECTED ~ 60% Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Study with others or work outside the home very difficult unless additional support is available, e.g. use of a wheelchair/quiet room for a rest period. Short (I-2 hours) daily home study/work may be possible on good days. Quiet, non-active social life possible. 50% Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Mid-day rest may still be needed. Simple, short (1hr) home study/home activity possible when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house but may be unable to walk without support, much beyond 100/200m. May manage a trip to the shops in the wheelchair. 40% Moderate to severe symptoms following any activity. Care must be taken not to over-do one's life style at this stage. Not confined to the house but unable to walk much more than 50/I00m, usually requiring aids such as walking stick/crutches. May manage a wheelchair trip to the shops on a quiet day. Requires 3 or 4 regular rest periods during the day. Only one 'large' activity possible per day - friend dropping by or doctor's visit or short home study (half hour at a time) etc with space usually requiring rest day/s between. ~ SEVERELY AFFECTED ~ 30% Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study very difficult indeed. 20% Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time. ~ VERY SEVERELY AFFECTED ~ 10% Severe symptoms following any activity. Weakness and pain in arms or legs. In bed the majority of the time but feeling more stable and less dizzy. No travel outside the house. Concentration very difficult indeed. A friend can be seen for ten minutes or so. 5% Severe symptoms almost continuously but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis; dizziness and nausea. Small, personal care may be possible (e.g. if washing equipment placed on the bed it may be possible to wash some parts of the body. As with 0%, sudden jerking movements can be a problem and wha t m ay be described as pan ic attacks are felt. No TV is possible but a little quiet music or audio book may be listened to for a few minutes. A friend can be seen for a minute for a hug and few words. 0% Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe dizziness makes it almost impossible to be propped up in bed for longer than a few minutes at a time. Light and noise are very painful indeed to the eyes and ears; curtains are closed and ear plugs are needed. Severe pain almost anywhere in the body with the skin feeling very cold and extremely sensitive to touch. Unable to care for oneself at all; washing needs to be done a tiny bit at times throughout the day. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred; little and often. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens the feeling of being severely ill, with no movement in the bedroom preferred. Visitors to the room is almost impossible. Talking, even to the carer/family, is often impossible. This is often misread as being 'selective mute'. Severe adrenaline rushes felt with heightened sensitivity; jumping and over reacting to doors shutting/door bell ringing, etc. Sleep pattern often completely reversed. ~ My Story ~ I was diagnosed with ME almost four years ago, but I believe it started a long time before that. When I was a teenager I started with fatigue, headaches and stomach complaints, I spent two weeks in hospital having tests and nothing was discovered except for Scoliosis (a curvature of the spine). I was referred to a psychologist and diagnosed as having school phobia. I continued my education with home tuition and eventually went to a hospital and home education unit where I took O'levels and GCSE's. In 1988 I started my first job and was reasonably well for a few years. Then in 1990 I went to train to be a nurse and the problems of fatigue, headaches, stomach problems and dizziness began. This time I was told I had IBS. I missed a lot of time at work due to the dizziness and then back pain. Eventually my contract was terminated because of my back. I was told that my curvature of the spine had been aggravated by the job and that I should look for more suitable work. More suitable work meant no health care, no childcare and no social work. I felt my world had ended, as I did not know what I could do. My health problems continued through the 1990's, though at times I was well enough to work full time. In 1994 I started a Diploma in Playwork and a few months in to the course I developed terrible dizziness and headaches. I had lots of tests including an MRI scan, but nothing was found and I was told it was just stress. Throughout the course and the extra year to convert to a BA (Hons) I continued to have poor health. I was investigated a neurologist, gynaecologist, ENT specialist and audiologist for many problems including dizziness, periods ceasing, tinnitus and migraine. At this time I was studying, trying to work as well and my long-term relationship ended. The conclusion was always stress. In 1997 I had a kidney stone, I was in hospital for a few days, but could not afford to take time off work so went back too quickly. I was working in three jobs at the time, a pub, a nursing home and a nursing agency, but none of them paid sick pay. After this I started a one year masters degree in Primary and Community Care, I was still working for a nursing agency and in the pub. My health got much worse and the tutors complained that I always looked half asleep and made me give up my pub job. The dizziness and headaches got much worse as did the fatigue and tinnitus and I started having nosebleeds, my IBS worsened and I developed an irritable bladder. Eventually I could take no more I was exhauste d and practically collapsed. I missed time at work and failed modules of my degree. After several tests my GP diagnosed ME and signed me off work. During this time I had no income as I could not get sick pay and could not claim benefit as I was still registered as a student. The only way I could get benefit was to give up the course; I did not want to do this as I had paid £2500 to do it! The course tutors were not much help either as they thought I should give it up, as people failing modules looked bad on them! After 6 months I did return to work, but on much shorter hours and in a less physically demanding department. I managed to carry on like this for about a year, though my health was not good and it was a real struggle. During this time I was on leave of absence from my course. In 1999 I moved to Leeds with my partner and found a new job. The job was a co-ordinator for a home care company and involved a lot of hands on care, driving, unsocial hours and on call work. I was having more time off than I was working and having real problems with dizziness, fatigue, pain, panic attacks and fits of temper. I saw several Drs, one said I had migraine, another said it was due to my diet and that if I ate 5 portions of vegetables a day I would be ok, another said I had flu! One day I ended up in being sent to hospital with palpitations. Eventually I found a GP who would listen to me and she said it was M.E and that I needed to take things easy. She prescribed Prozac to help with the depression and sleep disturbance. I have not worked for over two years now and my health is no better, in fact it is worse. I easily get tired and suffer a lot of pain and terrible dizziness, to name but a few. Since taking the Prozac the panic attacks have decreased, as have the temper fits and I do not get upset as easily as before. I was referred to Leeds Chronic Fatigue Service in April 2000. This is a three part process you see a psychologist, an occupational therapist and the consultant. I saw the psychologist and occupational therapist in summer 2000 and they agreed that I had got M.E, but could not give me any treatment until I had seen the consultant. In September 2001 I got an occupational therapy appointment, as the wait for the consultant was so long they were starting treatment before the appointment with him. I finally saw the consultant in October 2001, I was with him about 15 minutes, he was useless, he did not give me a proper diagnosis, said there was nothing he could do to help and that the only advice he could give me was that I should eat more salt to raise my blood pressure and not lie down as that also lowers the blood pressure!! Oh and I also found out that my weight had dropped to 7st 3, so Rob has been trying to fatten me up ever since! I am continuing with the Occupational Therapy, who advocated pacing/graded activity, but I am finding it very hard going and never manage to do what they tell me to. The theory is that you find a level at which you can perform without symptoms and gradually increase activity, but I am unable to cut down to the base line so cannot progress. "This is a way of planning your daily activities and gradually increasing what you can do. In Chronic fatigue it is helpful to avoid cycles of 'Boom and Slump' and grading your activity allows you to monitor your energy levels and plan your daily activities to avoid prolonged periods of fatigue" (Leeds Chronic Fatigue Service). Easier said than done when you have a home to look after. My GP also referred me to a counsellor as she felt that I was very isolated and depressed. At first the counsellor said that she could not help me as my M.E affects everything else in my life so there was nothing we could do to improve things. Eventually she did begin to understand a little and realised that I just wanted someone to talk to. Recently I went to some group sessions for p eople with confidence problems, this was good, but did not help with the M.E and I do not see the counsellor on a one to one any more. I finally finished my degree course in 2000, three years after I started it. The only problem is that I am now too ill to use the qualifications I hold. I would really like to be able to do something from home, but do not know what I can do. The year 2001 was very stressful, at the beginning of the year my mum was in a car accident and although she was not badly injured she was off work for a month and I was going backwards a forwards to Sheffield to help out. At the end of March my grandad died. And throughout the year I was battling with the benefits agency to try and get some money, but I am not entitled to anything. As well as all this we were planning our wedding and we married in June. Six months before the wedding I wanted to cancel it because of financial worries and doubts about my health, but Rob persuaded me to go ahead with it. It was a tiring day, but I got through on pain killers and adrenaline. I was not able to dance the night away or anything and I had to sit down during the church service, but it was a great day and worth the struggle. Since Christmas 2001 my condition has deteriorated quite a bit, I am in constant pain and cannot walk very far. My husband has to do things like shopping, cooking and cleaning for me. I feel terrible about this as he works full time. I am not able to go out much as walking is such an effort. I am looking into getting a wheelchair so that I can be a bit more mobile. We looked at some second hand chairs as we cannot afford a new one, but they were in bad condition. Some shopping centres run shopmobility where you can hire wheelchairs to go round the centre, I have done this a couple of times now and it certainly makes things much easier although it is still tiring, and it is amazing how many people just walk in front of you, they obviously do not value their legs much. Being in thewheelchair does not do much for my dizziness as my husband weaves between people and obstacles; I keep telling him I need a seat belt to hold me in! I do not know what the future holds at the moment. I just take every day as it comes and do what I can when I can. The thing that really annoys me is that no one else understands the condition and everyone expects me to be better by now and puts pressure on me to return to work and lead a 'normal' life. I am learning now what my limits are, but still try to push myself to hard at times, mainly to please other people, but I always suffer for it afterwards. I am getting very restless now and despite feeling so unwell I want to be able to work in some way, but everything I explore is not suitable. I am also keen to start a family, but Rob is not so keen for financial reasons and because he is worried about how it would affect me. I do not care if I am ill during the pregnancy; I am used to being ill and would get through it somehow. My main worry is that I may be too ill afterwards to look after a baby and that is not fair to the child, so for now I am waiting to see if my health improves. In the last year I have become involved with several M.E web sites and have made some wonderful friends through them. Being able to talk to others with the illness helps a lot and we share ideas and problems, we also have a good laugh too, which makes coping much easier. UPDATE 2002 I finally bought a wheelchair in May, it was very useful when we went on holiday, I would not have got as far as the airport without it! I now use it most of the time outside the house and it enables me to get out a bit more although it is still very tiring. Since having the wheelchair my pain has decreased. I have recently been asked to become newsletter editor for Leeds M.E group so that is a new challeng e for me. I am looking forward to it, but ho ping it will not be too much work for me. I got 225 responses to my M.E questionnaire and hope to find the energy to analyse them soon so that I can publish the results. There is still no change in my condition and I get so frustrated that I am stuck in a rut, there is so much I want to get on and do. UPDATE 2003 There has not really been much change in my condition, still functioning at around 30 to 40% Christmas was really difficult and left me totally exhausted even though we felt that we did not do a great deal. The preparations, travelling, seeing family and break from usual routine all take their toll. I always use the wheelchair now out of the house as I cannot walk far at all and it is rare for me to go out on my own as my wheelchair is attendant propelled, therefore I cannot use it alone. Driving is extremely tiring and our car does not have power steering, which would help a lot, so I only drive to the doctors the rest of the time I am dependant on my husband to take me anywhere. I find being stuck in the house very frustrating, especially as I am also limited to what I can do in the house as well. It is a struggle to keep it tidy let alone clean, I cannot not cook a meal, only quick snacks. The only thing I manage to keep on top of is the washing as I can just put it in the machine and leave it. We have just bought a washer dryer, so many things can go straight through to dry and do not need to be hung to dry. Last year we tried to get a cleaner as I was making myself ill trying to clean and getting frustrated because I could not do it. We tried agencies but they were far too expensive, so we advertised in the local shops. The first applicant seemed fine and we said we would give her a try, but the night before she was due to come she rang and said she did not want the job anymore. Number two rang and we said we would get back to her, but the number she gave us to call back did not e xist. Number three came and cleaned, but we could not tell she had been, what she did for 2 hours I have no idea as I did not follow her round, but she certainly did not clean! Number arranged to come and see us, but never turned up and had not left a contact phone number! After this we gave up, it was too stressful. I do bits when I can and my husbad does the vacuuming, the rest gets left :-( We are currently investigating the option of extending our house so that we would have a downstairs toilet and computer room, this would mean that I would not have to cope with the stairs as much, but of course cost is the main issue, these things do not come cheap and despite many battles with the benefits agency I still do not have any income! On a more positive note, at the end of last year I was able to stop my medication without getting any worse. it is a shame that there was no improvement in my condition, but at least I am not pumped full of pills and potions now, especially as it seems that they were not helping anyway, or that the effects they may have had initially had worn off. I am trying to be positive in this new year and hope that things will start to improve, but if not then I will cope somehow!
I admit it - I'm a fraud! Most of the opinions I've read are from people sufferring from ME. I don't. I never have. But I am a doctor, and I feel I need to write to explain a bit about the medical opinion of ME. As many people have pointed out in their opinions, medical views differ greatly. A lot of my colleagues are of the "all in the mind" philosophy, but some people I've spoken to are much more focussed on the likely viral aetiology. But you're here to read MY opinion, not my colleagues (at least, I hope so). OK, here goes. ME is real. It is a real condition, not made up, not imagined, but very, very real. But it is also a diagnosis of exclusion. Let me explain. To diagnose an illness, you ask certain questions, do certain tests.. then you make the diagnosis on the basis of the results. In a diagnosis of exclusion, you test for everything else - all the results come back normal, and you are either left with a normal healthy person, or someone with your "diagnosis of exclusion". And because ME is a diagnosis of exclusion, many health professionals don't believe it exists - if all tests are normal, how can there be anything wrong? True in theory, but I've spoken to many people with ME, and I know there's something wrong. Yes, it's been blamed on depression, and, to be honest, I can see why - there are similarities between the two, and, in early cases, antidepressants seemed to help with ME-sufferers. And that's probably why so many ME sufferers are put on antidepressants first. It has also been strongly linked with viral illness. In almost all cases I've seen, ME has started after a viral infection of some kind. That's too much for coincidence. There has also been recent evidence to suggest that ATP (a body enzyme) is depleted in people with ME - finally, the medical profession may have something to blame it on! Which leads me nicely onto treatment. If ATP deficiency is the true cause, treatment with nicotinamide adenine dinucleotide (NADH) should improve symptoms and a recent study (Ann Allergy Asthma Immunol 1999 82(2) 185-91) suggested that this was indeed the case. NADH aside, the only other treatment known to be of benefit is psychological - including graded exercise programs and cognitive therapy. And this, I believe is another reason why Doctors don't believe in the condition - how can something not be in the mind, if the treatment is psychological. Until the ATP/NADH link is proved, there will always be health professionals who don't believe in ME. But there are always health professionals who do. My advice to people with ME. Take the initiative. Read things on the website. Challenge your GP. Suggest your own treatment. And if he/she doesn't believe it's a real condition, take a printout of some information for him/her to read. You might teach your GP something they don't know.
The answer to both is yes, its just a matter of time before research shows both conditions to be "proveable". This is a long read so for those like me who have the condition, feel free to take your time and have a break if you need to. To be honest it makes my blood boil more with the Governments denial of Gulf War Syndrome's existence, because people are actually DYING of Gulf War Syndrome Its obvious at this time we are struggling to have the technology to pinpoint either conditions cause, but this doesent mean they dont exist. Its now obvious to all but the most ignorant that these 2 conditions are real. M.E, or CFS (chronic fatigue syndrome as its now called) for those who don't already know, is a strange, energy draining condition which affects people for varying times, 6 months for some to in my case, 13 years. Below is an explanation of what the condition is believed to be, followed by my experiences/beliefs and how I deal with it. Unlike some who seem to get depressed which is understandable, I'm not negative about it so feel free to read on! Hopefully you will have some fun reading about some of my experiences. My symptoms are the usual mental and physical exhaustion and fatigue associated with M.E as well as some bizarre ones such as visual 'afterimages'. I've tried most if not all alternative therapies, Spiritual healing/positive thinking/visualisation is the best for me, as well as eating carefully and taking Good quality Vitamins/ Minerals and Herbs. Most of the time I manage to keep symptoms under control unless I have a relapse, which occurs when I overstep my limits, as has happenned at work numerous times when I increase hours, too soon too quick. Relapses usually last for upto 3 months before I can return to work, still not doing much out of work. All I know is that as long as I try my best I feel good. Thats all any of us can do, is to try our best whatever the situation. I live on my own, although know that when I get really well again that I would love to have a normal family life if thats possible, at the moment I doubt it because I have lived alone for so long that Ive got used to it! I'm a naturally sociable person although this has been severely curbed by the condition, not to mention that I dont drink alcohol often as that makes things worse usually although the Purer alcohols like Rum and Vodka are tolerable - this seems to be common with many sufferers. Have a few friends, enough to get by on! Im 31 now, I only returned to work in 1999 and have had months off in that time. Fortunately my employers were/are understanding, and I work in a call centre. I love my job which helps, always do what makes you happy. The condition is slowly fading, well I have to believe that! I hope to keep increasing my activity as and when I can. I send my regards to all who have this bizarre condition. The first thing I would like to say is find yourself a GP who accepts M.E/C.F.S as real. It took me a while but I have a great GP now and it really does help enormously to have a Dr who understands. Don't put up with a Dr who is sceptical ' complain if necessary and CHANGE! Theres many more who understand the condition now. Have fun reading my experiences of the Medical Profession below!! Please substitute M.E For CFS as the condition is known by different names depending on where you live. WHAT IS M.E. M.E. (a form of Chronic Fatigue Syndrome or CFS) is a potentially devastating condition, the principal symptom of which is extreme fatigue. Other symptoms are also usually present though these can vary from person to person. These include muscle and joint pains, problems with memory and concentration, dizziness, sensitivity to light and sound, blurred vision, problems with speech, reading difficulty, palpitations, sleep disruptions, digestive problems, headaches and nausea. These symptom s are often severe and may not respond to medication. Some sufferers need a walking stick or wheelchair to get around. WHAT CAUSES M.E. No one knows for certain. Research has shown abnormalities in the brain, the immune system, the muscles and the nervous system. Some researchers believe that the condition is caused by a dysfunction of the immune system, while others think a persistent virus is to blame. There may be some truth in both of these theories and more research is urgently needed to find out more. HOW DOES M.E. START Usually with a viral illness which never seems to get fully better. A minority, however, experience a slow insidious onset. Other factors such as antibiotics, immunisations, and accidents can also seem to act as a trigger. HOW MANY PEOPLE HAVE M.E. Nobody knows for certain but there may be as many as 150,000 sufferers in the U.K. alone. CAN PEOPLE RECOVER FROM M.E. About 20% make a full recovery. The majority, about 60%, improve to the point where they are able, with care, to lead some sort of life - but with greatly reduced energy levels. Most of these are unable to return to full time employment. The remainder, about 20%, sadly do not improve and often become severely disabled. HOW DOES M.E. AFFECT PEOPLE'S LIVES The fatigue in M.E. is activity-related, so the more you do the worse you are likely to feel. Careful pacing of activity and rest is therefore essential to bring about improvements. Sufferers have to try to stay within their energy levels or they may make their condition very much worse. These energy levels may vary, not only from person to person but also with time: from month to month, week to week or even hour to hour. A sufferer may be able to go for a short walk one day and the next day not be able to get out of bed. Sufferers may also have to adjust their diets, eating less sugary snacks and processed food s, and they may develop intolerances to some common types of food such as wheat and dairy products. The majority of sufferers have to give up their jobs and make other adjustments to their life styles in order to stay within the limits of their energy. These adjustments can be extremely traumatic. Families may be torn apart under the strain. Needless to say, these problems only add to the misery of what is already a dreadful illness. MY Experiences Of M.E and How I have adapted. I grew up a with a normal 'happy childhood' no major illnesses apart from a bout of Glandular fever when I was 15 which caused me to miss a school skiing trip. Perhaps this was the start of what was to be my life's defining experience so far. I was very active, playing table tennis for Leeds and winning a few things along the way. I also did a lot of weight training and took some glandular (not steroids) tablets which caused my spots to turn into severe acne, probably affected my hormones , silly looking back but when you're 16 you don't listen to your parents and think you are always 100% right! My belief is that my CFS/M.E was caused by overtraining at weights and table tennis at the same time (I was a health fanatic and trained harder the more tired I felt - NOT GOOD)+ long term antibiotics followed by a 3 month course of drug called RO ACCUTANE (this drug now comes with a suicide warning, people are suing Roche due to patients taking their own lives while taking this drug and others left with inexplicable symptoms afterwards) however it did cure my severe acne (the specialist at the Leeds General Infirmary remarked I was one of the worst cases he had seen!), the drug left me feeling extremely tired and I was forced to stop my activities and a year later at the age of 18 I was extremely ill and forced to stop working. I had severe ear infections, my immune system was severely weakened from the drugs and overtraining and I felt as if I was watching myself die and certainly felt as If I was, this may sound overdramatic but this was at a time when The Medical side didn't understand or recognise it and my own mother told me to get to work and pull my socks up, and she had missed 6 months out of work herself with 'post viral syndrome'! My belief was that if you put the work in you get the results out, but with CFS/M.E this is not so, you have to limit your activities until your body tells you what is the right limits, not an easy thing to do especially when it comes to work. I have slowly learned to curb my fanatical determination to succeed no matter what and am now very philosophical about my life and the experiences I have had since it began. Since that time 11 years ago, I have been at my wits end a more than a few times, witnessing my parents marriage disintegrate when my illness began, returning to work after 1 year in 1991 and burning out after a year, having to move out of home later in 92 as my mum couldn't afford to keep me, moved into a YWCA hostel where I met the future mother of my child, faced upto a medical exam by a dss 'doctor' who said I was fit for work, asking me questions like ' do you have M.E'' after I had spent 15 minutes explaining everything about it and how it affected me, and then he asked 'did you move out of home or were you booted out'' It turns out that this Turnip was the former Lord Mayor Of Otley and was Lord Mayor of Leeds a few years ago ' Councillor Graham Kirkland ' an imbecile if ever I met one. How these people ever get into positions of responsibility and public service amazes me. Needless to say I appealed and got the benefit. I was officially diagnosed as having M.E/CFS by a Psychiatrist at The Leeds fatigue Clinic in 1992 researching the illness who happily told me that there was no psychological/depressive basis for my condition whatsoever ' this I already kn ew but this was music to my ears after previous experiences of the medical profession. After changing my GP to one who I am still with now ' my old GP told me, after I was forced to stop working due to a relapse in 1992 that 'you will end up in a doss house in Headingley' and I was classed as a hypochondriac by the ignoramuss psychiatrists at ST James's, Leeds, again very angry at the time but now I look back and laugh at their shallowness and ignorance. Even my current GP laughed at the ludicrousness of their comments!! Went to Study part time of course only a few hours per week and gained qualifications in Counselling, Psychology and passed a couple more Gcse's (Maths and I.T - grade A yahoo) and have done some voluntary work helping others all of which have been enjoyable. I have also had 4 (!) nose operations which didn't work 100% and have now given up on surgery as a way of treatment. At least my body was strong enough to withstand the assault of 4 general anaesthetics, something which is also mentioned as a cause of this condition - its really ANYTHING which can weaken the immune system which I think is why its hard to pinpoint the exact cause - we are all different and have our own strengths and weaknessess. I met a nice girl 10 years ago(we parted company 2 years ago) and had a daughter who is now 5 , although I, my daughter is happy and I see her as often as I can. I have modified my eating, reduced sugar and yeast, and find that multivits and CATS CLAW have helped me to recover to a point where I work part time. I am currently investigating the possibilty that OXIDATIVE Cellular Stress/Degeneration and the Links with Antioxidants could have with CFS. All I can say is that part of me (the greedy, material ego!) knows that I should have achieved a lot more by now (I don't own my own home, don't drive and am always hard up due to being limited to part time work at the moment) and I kn ow I would acheived much more in a material sense had this illness not come about, but in my own way I have achieved quite a lot and know that there is hope for ANYONE no matter what illness or tragedy befalls us. When a baby learns to walk and it falls down we don't say 'well that's it baby you cant do it' no the baby keeps trying until it can walk. It's the same with adults. At M.E meetings in Leeds I have met too many people who look around and think 'its too late, i'll never work again' or feel bitter that they haven't got whatever they think they should have. Yes its cruel when you look at it this way but life is here to teach us something and I firmly believe that there is a higher purpose/reason at work, I am more philosophical and it has changed my personality and inner self for the better, I still don't know why I haven't got over it, all I know is that you keep getting back up off the floor and keep your MIND determined, even during those times when you are bedridden. As Deepak Chopra says, Dont try to analyse it, dont try to interpret it, just "BE" with it. I have found that Deepak Chopra's work on tapes and in books very useful and recommend them to anyone with a curiousity in why things are as they are and how to improve oneself from within. DON'T GIVE UP. THERE IS A REASON FOR EVERTHING. THERES ALWAYS SOMEONE SOMEWHERE WORSE OFF. Please feel free to email me at firstname.lastname@example.org if you want to talk about this or anything else. LIVE LONG AND PROSPER!