The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.
- Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing and parents and grandparents sat in the sun and chatting while watching them.
The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts implying that she is tired of talking always about the same thing.
- Young woman: You only see conspiracies, for you all is very simple. How can you be so sure if you hardly leave home? When you live through your window! Instead of spending hours writing pamphlets that I’m sure that nobody reads, and taking pictures, shouldn’t you focus on your next book?
The woman’s expression becomes serious and she turns angry replying with some indignation.
- Woman: But it's obvious! It doesn’t take Sherlock Holmes! The dog of the first floor neighbors died a few days after the first fumigation. They say that he was intoxicated by something that he ate... A few days ago an ambulance took the old woman who lives upstairs in the middle of the night and she is still hospitalized, when in the 40 years I have lived here I had never seen her having a cold! And what about the children's of the fourth floor? (She takes a break to breathe because she speaks so fast that she is even short of breath.) Every day I see them with the bronchodilator and every other minute in the ER! Their neighbor has cancer and since she's having chemotherapy she can no longer tolerate perfumes and now she has to wear a mask when she walks along the street. (Now almost shouting.) They say that she has Multiple Chemical Sensitivity (MCS) and doctors don’t pay attention to her!
The woman makes faces parodying the young woman’s lecture that she already expects and knows by heart.
- Young woman: You are a bit alarmist! There are only a few people who suffer MCS, there is no need to worry. And today almost everyone has allergies or asthma and authorities warn us that one of each four people will have cancer throughout our lives. (Goes back and speaks from the doorway leaning on the door frame.)This is the modern life. We have to die of something!
The woman turns and answers indignant from the bed.
- Woman: And does it seem normal to you? Really? And when this affects you, will you still think the same?
The young woman finally leaves the room and her voice is heard from the hallway with a tone between weary and sarcastic.
- Young woman: Well, see you next week. Do not keep on spying on your neighbors because you will end up crazy. You should amuse yourself and don’t fantasize anymore.
The woman answers raising her voice while the young woman closes the front door and leaves the house.
- Woman: Don’t worry, my attitude has no solution. (And finishes angry talking to herself.) And neither does your stupidity.
The woman is still staring out the window with indignation and with a worried face and thinks aloud.
- Woman: Does anyone realize? I see everything so clearly that it scares me. Makes me want to open the window and shout it from the rooftops, but will anyone hear me? Why don’t they listen even when you alert them? (With a sarcastic tone.) Having no time and the fast pace of life sound like cheap excuses to me. (She stands up and gets closer to the window.) It’s simple. We've become worse than donkeys, because it is not even necessary that they put blinders on us to not look beyond the established road. We no longer have the instinct to do it! We are afraid of what we might see lest we have to react. (The sun has set and she begins to close the blind.) It must be that I have no fear of looking or I have nothing to lose. It must be that my window is different..
I was a very happy six year old. I loved school and my boyfriend; I could spend hours in a swimming pool and always wanted to climb everything in sight;
I couldn't wait to have a proper bike without stabilisers. Life was out there and I was going to live it to the full. Then mumps hit my class.
My peers continued to run around the playground, but I was in bed for weeks. In time I went back to school, but gone was my childhood vigour. I would return home so desperate to sleep that sometimes I wouldn't make it past the downstairs floor where I would lie still for a couple of hours. I had mysterious pain migrating round my body and was driven crazy by an 'irritable' bladder. I struggled to hold a pen and my eyes wouldn't focus properly. My sharp brain became increasingly fuzzy - teachers were confused to hear their consistently competent and confident pupil repeat 'I can't do it, I really can't'. I was a shy, sensitive child and these mysterious symptoms were so strange, so inconsistent, so confusing that I was embarrassed - and even ashamed - of them. When doctors didn't show any significant concern, I began to hide everything that I was experiencing and struggled on alone. My mother knew that I was "different" from other children, but it was not until my symptoms became hard to conceal that anyone realised that something was very wrong with my health. By this point I was nearly ready for secondary school.
It was now the early 90s and ignorance about ME was still widespread. With no obvious cause to my constantly deteriorating condition and still no support from doctors, I was forced to pursue as normal a life as possible. For me normal meant being physically dragged from my bed in the mornings only to collapse at school and be sent home or, worse still, carted off to hospital in an ambulance. It meant standing at the foot of the school stairs crying at the thought of having to climb them. It meant my best friend carrying my school bag because I was too weak to do so myself. It meant being bullied and ostracised for having an as yet unlabelled but crippling illness. It meant painful self doubt which soon turned into self hate - if I wasn't ill, then clearly I was a defective human being. Most of all it meant isolation and misery - was I going to suffer like this for the rest of my life?
By the age of 14 both school and home tuition were a physical impossibility. With little and sometimes no functioning in my legs I was now in need of a wheelchair. At last my doctors paid attention; at last they realised what was wrong. ME. A chronic neurological condition triggered by a virus. In my case: mumps. My relief was incredible. I wouldn't have to fight against my pain and ignore my disability daily any longer. And surely if it was an illness it would one day go away. It's hard to imagine how I would have felt if I'd known that fifteen years later I would not only still be waiting for that elusive recovery, but would be far far sicker.
The decline continued and at the age of 16 I found myself housebound. But I was now absolutely determined that ME would not ruin my life. The Association of Young People with ME (known as AYME) was looking for volunteers and I embraced the opportunity. My career aspirations had long been charity PR and I was amazed to find myself fulfilling them despite my circumstances. And I was not disappointed in my choice of occupation. The next five years were extremely rewarding and I felt honoured that my achievements were twice recognised by the Whitbread Volunteer Action Awards. But my disability was now profound. I needed someone to bath me and at times to dress me, feed me and help me to the toilet. I worked from bed. At the end of each day I lost the ability to speak and the pain was so bad at night that my mother had to get up to provide additional care. This was not going to stop me from moving on into the wider world though. At 21 I commenced what were to be a satisfying three years working (still from bed) as a project adviser for various charities, including the UK's leading family support organisation Home-Start.
But in 2005, when I was 24, life was to take a very cruel turn. For some time my doctors had not known how to manage my extreme pain and I was once again pushing myself too hard; I now found myself spiralling into a level of illness that was both shocking and overpowering in its severity. I had no idea that modern medicine could allow such suffering. I knew that my family and doctors felt as helpless, desperate and afraid as I did. I lost the ability to swallow, to speak, to see, to move. I was doubly incontinent, often paralysed, tube fed and in unbelievable pain, only partially relieved by high dose morphine. My nausea was so extreme that it had to be treated with drugs normally reserved for patients undergoing chemotherapy. I could bear no stimulation - even though I couldn't open my eyes and was in a blacked out bedroom, my eyes had to be covered at all times, I wore earplugs for 23 hours per day and someone's mere presence in my room was like an assault. At times I didn't recognise my own mother and was confused about where I was. In 2006 rare complications meant I came close to losing my life. For much of 2007, as the misery dragged on, I regretted the life saving treatment and yearned to be released from the hell that was my life. But I was incredibly fortunate. By the end of 2007, when I truly felt I could keep going no longer, my body rallied.
The improvement came slowly. The first major milestone was washing my own face. Eventually I progressed to having my curtains open. Then being propped up in bed and later sitting on the edge of the bed - my family and I could not stop beaming with excitement at my managing to place my feet on the ground without agonising pain or blacking out. In time I started taking a few wobbly steps with a walking frame, having a bath thanks to an electric reclining bath lift, going downstairs with the aid of a stair lift and even managing to go outside in the sunshine for a few minutes now and again using a super duper reclining wheelchair. At last I could spend time with my loved ones - my parents and I began to have weekly family film nights which, though difficult physically, were an almost unbelievable joy and I got into a routine which allowed one phone call to a treasured friend each week. I even - and on reflection I do not know how I managed this as I was still so very ill - wrote my first book, "Severe ME/CFS: A Guide to Living" which was well received by my fellow sufferers, carers and professionals, with orders flooding in from around the world within days of publication. My dreams seemed to be coming true; finally I felt I could dare to imagine one day having a life that was not dominated by crippling illness. I was so full of hope and love for life. But such happiness was not long lived.
A difficult and unavoidable hospital admission in 2009 brought with it a crushing blow: devastating relapse. There are not words for the disappointment I felt. I was thrown back into the indescribable hell that is ME at its worst and I did not know how I would stand it. I was once again trapped in a body that was torturing me 24 hours a day and there was no way of escaping. In the first six months of 2010 I was hospitalised four times as my body struggled to survive the intense symptoms. I spent a total of nine weeks as an inpatient during this period; it should have been longer, but the hospital failed to meet my needs during the last admission and I was forced to discharge myself before irreparable damage was done. Some of my days in hospital were amongst the most frightening of my life - and all because the hospital did not provide a care environment appropriate for someone with severe ME and thus my condition was magnified a hundred times over (it was so bad that I don't know how I stopped myself from screaming - I certainly could not hold back the sobbing). I was given a central line for long term intravenous nutrition and medication, but it had to be removed when I developed a serious infection; this in itself was another significant blow as other methods of delivering the symptom relief so vital to me are not so effective and complications have made tube feeding dangerous for me. All I wanted was to be able to turn the clock back a year. The old cliche that the simplest things in life are the best is true. I yearned to feel fresh air on my skin, to eat a meal, to enjoy the sensation of clean hair... But most of all, to feel less ill. Of course, nobody could make this happen for me. Somehow I had to find the strength to accept the nightmare I was stuck in and to have faith that, in time, my health would start to improve again.
So what is my life like now? Thanks to the strong drugs delivered round the clock by syringe driver and injection that currently keep certain symptoms reasonably stable, I am managing to stay out of hospital. However, it would take very little to change this and so my family and I constantly live with the worry of when my next health crisis will strike. It is impossible to describe how ill I feel every minute of every day - many people would find this hard to believe, but it is becoming worse than when I was in a High Dependency Unit, my body in shock and my organs failing. It really does seem incredible that I am not actually dying. I sleep for up to 20 hours a day and the only people ever to enter my darkened room are my mother (who is my 24 hour carer and as such is virtually housebound herself) and the community nurses who support us; I have no direct contact with anyone else, not even my father - despite living in the same house - as I'm simply not well enough. I am mostly cared for in silence as I myself can only whisper and hearing other people talk can make me feel even more horrendous. But when my mother comes in the room my head fills with all the thoughts, feelings and ideas that I would like to share with her and not being able to do so is beyond hard; even worse is having to spend so much time lying here alone because just having her company can intensify my symptoms to an unbearable degree. I desperately miss communicating with friends - I keep hoping to send them messages, but I never find the strength. I have not been washed properly for months - it's just not feasible. We've had to make the very emotional decision to cut off all my hair as my inability to cope with having it brushed meant that it had matted together into a huge, tight lump which was horribly uncomfortable. I have to wear nighties that button up at the front so that my mother can roll me into them, but I still have to leave a couple of weeks between changing as it is such a strenuous task (this despite the fact that they are frequently soaking wet due to the horrendous sweats I have on an almost daily basis). The sheet on my bed is often left unchanged for weeks as when it is my body's reaction is extreme: seizures, breathing difficulties, tremors, spasms, hideous pain and nausea. I struggle to cope whenever my mother changes my incontinence pads and find myself dreading those times. I always have to lie flat and have pillows surrounding my body as I cannot support myself; just lifting my head up for a few seconds, if possible at all, can leave me on the verge of losing consciousness. For hours each day my body is so hypersensitive that contact with bed covers can send me demented with pain. I require a drug which is one hundred times the strength of morphine just to be able to manage some ice cream and even then the swallowing exacerbates my pain and many of my other (100+*) symptoms. Having once been dangerously underweight, I can now do nothing to stop my ongoing weight gain caused by a restricted diet, medication side effects and the illness itself. I worry constantly about my teeth as brushing them isn't possible - it would make me dramatically ill and could send me back into hospital (and I dread to think of what would happen to my body if I was put through another admission) . The basic necessities of daily life are so far past my physical capabilities that my overall condition is steadily declining through the accumulative effect of chronic over-exertion. It always seems hard to see how I could get any worse and yet I do; it is impossible not to be frightened by this. The highlight of my day - my only real distraction - is going through the lovely post that kind and thoughtful friends keep me supplied with; some days I just can't manage this though and often when I do the effort involved results in a fever.
Mine is a tough life filled with constant physical pain and almost unbearable suffering, but I try not to dwell on it. Amazingly I am not currently depressed though I inevitably have my low days and I do get angry when I think of the huge negative impact that doctor ignorance and mistreatment has had on my body. I still have the intense passion for life that I had when I was that healthy little girl all those years ago and I can't wait for the day when I can get out of bed, walk out of my room and embrace every opportunity that comes my way. Sadly, I cannot see this happening before my 30th birthday in the spring of 2011. It's hard to believe that I am approaching such a landmark date. Everyone questions where their twenties have gone as life flies by so fast, but I really feel that mine have been stolen from me. And not just my twenties, but a large chunk of my childhood and teenage years too.
ME has taken so much from me and inflicted so much pain. After 23 years there is still no end in sight. It truly is a hideous illness.
N.B. Much of this was written prior to my relapse. Recounting what has happened since my relapse has been a huge undertaking which has taken 15 weeks of writing a sentence at a time and had a significant impact on my symptoms. However, I feel it to have been a very important task. ME is extremely underestimated. If there is a chance that describing my current life as well as my past experiences will help people to understand the enormity of this largely hidden illness, inspire health professionals to improve the care offered to sufferers or provide the small comfort of knowing one is not alone to others who are struggling with severe ME, I am pleased to do so no matter how difficult.
Pain: muscle/joint/bone/neuropathic/vein (anywhere and everywhere in body), headache/migraine, abdominal, pelvic, toothache, earache (and itching inside ears) Muscle: pain, weakness (despite natural strength remaining evident at times), fatigue, tightness, stiffness, spasm (inc. dystonias), twitching, tremors, rigidity, hand/foot clawing, transient paralysis, inability to open eyes, collic, extreme problems with sustained muscle use
Joint: pain, stiffness Flu like: malaise, exhaustion, aches, (post exertional) low grade fever (approx. 37.5-38.0 deg), sore throat, tender/swollen glands
Sensory: light/sound/touch/smell/chemical/taste/vibration/movement/medication (e.g. antibiotics)/weather hypersensitivity, extreme reaction to sudden noises/movements (e.g. doorbell or door opening), extreme pain response to only slightly painful stimuli, extreme pain response to painless stimuli, sudden sensory overload, inability to filter unnecessary sensory information (leading to significant restriction of cognitive abilities and increase of ill feelings) strange sensations (e.g. pins and needles), loss of sensation, inability to judge position of limbs.
Gastrointestinal: nausea/vomiting, acid reflux, icrease or decrease in appetite, severely impaired motility leading to constipation, paradoxical diarrhoea, bowel cramping/pain, flatulance, digestion difficulties, faecal incontinence
Urological: difficulty emptying bladder (leading to frequency and leaks), painful spasms, pain on urination, bladder ache, incontinence
Cognitive: impaired memory (inc. temporary loss of significant information from the past, forgotting things I've been told recently and stopping speech mid sentence as a result of being unable to remember what I'm saying), (occasionally) inability to recognise familiar people, poor concentration, brain fatigue, impaired intellect, confusion/disorientation, sense of disconnection from environment, brain "freezing", cognitive slowing, difficulties normally associated with dyslexia/dyscalculia/dysgraphia/dyspraxia, difficulty learning entirely new information, difficulty or inability to understand speech (often sudden onset), reading difficulties (inc. word blindness), using wrong word in writing or speech, difficulty/inability to make decisions (trying to make decisions can cause overwhelming ill feeling and brain paralysis, sometimes leading to panicky feelings), difficulty multi tasking (despite natural ability!), loss of meaning of time, difficulty with telephone conversations
Eye: blurred vision, "floaters", other visual disturbance, pain, twitching, inability to open, watering
Sleep: hypersomnia (up to 20 hours sleep in a day), insomnia (up to about 60 hours without sleep), frequent waking, disruption of circadian rhythm, difficulty getting to sleep, light/unrefreshing sleep, dream changes
Temperature: extreme temperature fluctions (largely unrelated to environment), cold hands and feet/poor circulation, (post exertional) low grade fever (approx. 37.5-38.0 deg), sweats
Other: excessive thirst, salt cravings, dizziness, vertigo, orthostatic intolerance/difficulty standing still, fainting, myoclonic jerks, clonic seizures, absence seizures, hallucinations, palpitations, raised resting heart rate/tachycardia, swollen feet/ankles, extreme pallor, cyanosis, tinnitus, panicky feelings (associated with degree of illness rather than thoughts/circumstances), difficulties with speech, difficulties with chewing/swallowing, allergies, poor fine motor skills, difficulty with physical tasks requiring a sequence of movements/actions, clumsiness/poor coordination, problems with balance, episodes of feeling high/hyperactive thoughts/behaviour, weight gain independent of calorie intake, hypoglycaemia-like symptoms, breathing problems, mouth ulcers, bacterial or fungal skin infections, menstruation changes, painful menstruation
I'm hoping you will help me with something simple. Let's get severe ME in people's hearts and minds this Christmas.
Christmas is such a happy, fun time for most people. Hearing what it is like for those with severe ME is likely to make a huge impact on those who've never been in that position (even those with mild or moderate ME) and being reminded of such things will touch the hearts of those who've recovered. So let's use Christmas to get more help and support for people with severe ME.
Let's spread a powerful message as far as we can throughout the internet. Please post the following anywhere you can think of; forum discussion boards, blogs, Facebook groups, your Facebook status - literally anywhere and everywhere:
(Permission to repost)
It's that time of year again: time to write cards, buy presents and choose party outfits... time to celebrate Christmas.
Thousands of people, however, won't be well enough to celebrate.
Imagine not being able to wish your friends "Merry Christmas" because you can't speak, not being able to open the gifts you've been given because you're too weak, not being able to have the Christmas tree lights on because they leave you feeling desperately ill, not being able to eat roast turkey, Christmas pud or chocolates because you're unable to swallow (and too nauseous anyway), not being able to kiss under the mistletoe because you're in too much pain to have someone close to you - imagine spending Christmas Day lying in a dark, silenced bedroom whilst your family enjoy the festivities downstairs.
That's what Christmas is like for those with severe ME.
Want to do something to help them?
It's easy. Just take simple steps to support the promotion of the highly acclaimed book "Severe ME/CFS: A Guide to Living" (www.severeME.info). It is "the book every patient with severe ME has been looking for" says Vikki George, patient. The more widely it's publicised, the more help and support sufferers will get.
Click on the link below for details of what to do - it will take only a few minutes of your time.
And if you're a Facebook user: please, please use this message for your status. Give people struggling with severe ME the gift of public understanding by highlighting the pain and suffering that will be depriving them of Christmas.
What a winsome disease this is, it travels where it wants, lands on the unsuspecting, devastating, tearing lives asunder. Like a cuprous wind, whips up lives, and drops them down, bruised and wounded never to be healed, they lie in heaps of forgotten souls
It is a world full of people who complain and who live grey and empty existences. People who do not have the courage to resist, to have their own thoughts and get dragged by the crowd. It is hard to live in this herd if you are not like them, if you know what you think, if you are not scared to say what you think, and if you do not care about not being accepted by others. Then you don’t fit in, you are different, you are radical.
But an ill person cannot be like that. You have to be well-behaved, let yourself be brain-washed and follow the established road wearing a mask without thinking. If you have Multiple Chemical Sensitivity, an illness that is not recognized, you fight to survive. But don’t make too much noise and just follow others. Don’t think, don’t do. You are sick. Behave as such. You have to be obedient and ask for permission so that you will not be thrown out of the herd, a herd for which others kill themselves to be a part.
And in the ignorance that surrounds us, the seven capital sins are more relevant than ever, in these times when there seems to be a theory for just about everything. In these times of the decaying Welfare State.
With the senses numbed, SEX becomes another frustration in an empty life in which to drag yourself day after day without stopping to think.
It is a life with the frustration that becomes an unsatisfied HUNGER. Eat until you burst. That anxiety which impedes one from reacting and keeps one squashed under a mountain of human feed. The perverted pleasure in an overfed society.
An emptiness that invades us and a growing hate which turns into anger against all that does not suit us under childish and ridiculous excuses. INTOLERANCE becomes violence against those who are not like us, perhaps because those who think scare us.
Without being conscious of our lives, the days go by while we look at our pockets to see if we are better than others. We COMPETE in a silly race to show our success. We pretend we are happy. Inside, we are empty.
Life is a parenthesis of fear and of superficial comfort waiting for things to change WITHOUT MAKING AN EFFORT, sucked in by a system that wants us not to think.
We are dragged by laziness. We hate those who we think are better than us. They remind us of our not wanting to make an effort. We waste our lives wishing that they would stumble while we CRITICIZE their successes and, without knowing it, we wish they were as mediocre as us.
A cheap plastic beauty poisons us, one that makes us feel better for a moment in which we think we are better than others. A toxic beauty for which we don’t care about the price we pay in a world where real health is not valued. Enormous fake PRIDE, the arrogance caused by ignorance. Who wants to be healthy if one can seem beautiful even if being stupid? Who does not want to seem better than others?
I work on a help line for ME, in Kent and I hear so many horror stories, and medical abuse I and a few activists that can make london APPG's get there and tell it like it is, but under the Labour government, we might as well be banging our heads against a brick wall.
I attended and spoke at the Inquiry, and I feel as I brought the message from Kent and how we were being treated, my evidence was not reported with the honesty that i gave it.
I am hoping I will be well enough to go to the DWP conference given by AFME so as I can con confront AFME with the evidence and ask how they are going to deal with the Alter research, are they going to put their heads in the sand or fight for our rights, I am under no elusion that I will get a truthful response.
Then I hope to well enough to go to the APPG in November, to see if our new government have, the openness and fairness that they say.
It is so hard to make plans with ME, I can have one good day use it a be ill for a month, but I feel that if ME people or their carers can make it to places and explain in a cogent manner one day we will be heard.
I believe in a universal justice, even though it is slow, and I think of Martin Luther King, Ghandi, and Emily Pankhurst, that they did not give up, and in the end justice rose above evil.
My husband cannot support me as he has Parkinson's disease, but I have promised myself that I will fight till by last breath, as I only live 40 miles from London I and my other ME friends will get there, and what a motley crew we are, walking sticks and mobility scooters, decending on the APPG. One of my friends has to nudge me every now and again as i faze out. If only there were more activists there, they look at us as though we are ready for the psych' ward, well at times when my brain goes to mush I must sound like it, many people ask me if I have been drinking, when my speech starts to be affected by the ME, only wish I had been down the pub, swillling back a few jars.
This is to let you know, that we are doing our best to fight for you and your wife and all the children laid waste by this disease. My daughter and I have what you call moderate ME, although it causes a lot of pain and exhaustion, we do have windows of normality.
I hope this makes sense as I will not say I work very well cognitivly.
Karl Krysko, BA (hons), BSc.
We have gleaned for quite some years now from the early super work of people like Suzanne Vernon that exercise challenge elevates the abnormal expression of already up regulated genes in ME patients.
We also have plenty of evidence that mitochondrial compromise is involved in these patterns of metabolic dis-regulation, and can result in such outcomes as oxidative stress, which is potentially very damaging. For every extra molecule of vital ATP energy mitochondria are required to produce with activity demands, in ME these damaged cell organelles also release one extra unit of super-oxide. There is a direct one-to-one correlation between both cell products, and the oxide acts just like smoking 5 cigarettes a day that will also produce a given level of cell damage.
Graded Exercise or Graded Activity Therapy in any patient suffering from ME whatever the severity will thus increase the demand for ATP energy and hence increase super-oxide leakage longitudinally as well. GET and GAT is therefore like telling our 5 a day smoker that going to 30 or 40 a day will not harm them, and then reporting that doing so does not appear to make patients worse. Such irresponsible and dangerous statements have even been made by ME supporters in regard to CBT and GET here in Wales, for example, where we unfortunately still have several such therapy clinics.
A protracted long-term GET induced oxidative stress complication is only one of very many other molecular consequences involved, where systems can similarly be over driven causing potential damage to DNA, the vascular system, cell membranes and channels, other cell organelles, and so on almost endlessly, just as with additional ‘graded nicotine’ use. And, of course, GET and GAT clinics do not check-up on their clients some years down the line to see how they are doing health-wise, any more than does the tobacco industry.
With CBT, also, patients are not generally encouraged at all to investigate medical and research findings, or attend national or local ME support group meetings since such warnings about oxidative stress, and the like, will only re-enforce the patient's 'faulty' health belief that they are still organically ill, "following some long since passed viral or traumatic incident, and that has merely left them physically de-conditioned." (Or so the story goes). Because of the latter state, any current additional activity only induces a fatigue or pain response accordingly (unfortunately confirming the patient's misinformed suspicion that they are still medically sick).
So, the CBT aim is to discourage talk about ME symptoms, discourage the use of quite unnecessary health props such as wheelchairs or walking sticks, and restore the original level of fitness gradually by incremented exercise and activity that should eventually return the patient to symptom-free normality, and even work.
With this CBT approach, ME patients will never be given medically helpful advice showing, for example, that CoQ 10 could block the action of super oxide in oxidative stress, protecting patients from its effects.
Keeping patients deliberately in the dark medically in this way, and from informed understanding and choices about what damage GET and GAT itself can potentially do according to current informed thinking, has got to be immoral and a scandal, and will deserve its place in medical history one day, with its promoters.
Not, therefore, to diminish any of the important comments of Greg Crowhurst, in one way the long-term effects of both CBT and GET are more deviant, covert and eventually health compromising to the less severely effected ME patient attending these UK NHS Clinics because, mercifully, the severely effected individual simply cannot sustain the damaging upward trend to extra effort required in graded exercise and activity that the approach demands over time. But the stronger ME patients might go on damaging themselves, like chain smokers, for many months, years or indefinitely, looking well enough - until something gives.
I am delighted to be given permission to publish this inspiring article by Eva Caballé, whose book "Missing: A life broken by Multiple Chemical Sensitivity" , not yet published in English, has had the most extraordinary impact in Spain and around the world. Please do read Eva's remarkable account of how she became an MCS activist here : http://nofun-eva.blogspot.com/2010/03/become-mcs-activist-in-365-days.html
During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve.
My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. But although I got sick suddenly, the process itself happened slowly. I was preparing for MCS for many years before I was aware of it. My body was warning me repeatedly without my understanding what it wanted to tell me. But how could I know that everything happening to me was the prelude to MCS? It’s almost impossible to know since information about MCS is kept secret from the public and when anyone dares to raise a voice, they are automatically silenced by those who say MCS is all in the minds of the patients.
It’s not easy to understand what happens to you as you search for a diagnosis, all the while trying not to fail during the long journey while you are riddled with attempts to damage your self-esteem as you struggle with a more diminished health status every day. The last stage of this particular metamorphosis happens when you finally know what it is happening: you have MCS. And then you start to reconsider the life you have known before in order to adapt yourself and to survive into the future.
All of us have gone through the stage of crying over things that we have lost, to hate what we have become. Where is that tireless and impulsive person who took the world by storm? It’s a natural, healthy and necessary stage. But oddly, then comes the most difficult thing: to find our place in this new world in which we’re doomed to live.
And surprisingly, when I thought that my life couldn't’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.
The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. My timid voice started to be heard on my blog, No Fun, and then gathered strength thanks to Delirio’s articles, which were translated into several languages. And the first of them, “The Naked Truth about MCS,” was read on the Spanish Radio 3 program Carne Cruda. It was then that I finally dared to do something I had never imagined I would ever do: to write a book.
The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. Missing: A Life Broken by Multiple Chemical Sensitivity is a fulfilled wish as I report the situation in which we live. It’s my metamorphosis inside the metamorphosis of living with MCS. It’s my testimony, my life, my reflections. It’s also my contribution to the fight we’re doing at an international level to have MCS fully recognized. My book is the clearest proof that MCS didn’t take away my essence or my attitude; MCS didn’t steal my dreams but rather it changed my dreams so that I could help others.
We have decided that it is the ones who are suffering who are the true Church, who know God. In their poverty, He shines most brightly. As all choice is taken away He is the one choice revealed most splendidly, brightly, truly.
It is His Grace that keeps us going here, not the institutional Church here but those like Theresa and Pauline, authors of the Breakthrough Prayer , and all those others who reach out, who know God.
Theresa says the Breakthrough Prayer :"all came about as I was contemplating the plight of children struck down with M.E.and the horror faced by their parents, struggling to keep them out of psychiatric units; sometimes forced to leave the area and find refuge in safer counties where better understanding through a sympathetic pediatrician might be found.So I phoned my friend Pauline and the prayer came into being.I think it is very powerful and beautifully prayed by Linda."
The first BP was in October 2001 to coincide with the Feast of Our Lady of the Rosary. So for everyone , we had "Our Lady of the Rosary please pray for us".
God our Father, we love you and know you love us. Today with one voice we beseech you to help us in our suffering.
May we bathe in the light of your love and healing, giving us strength to get through each day. By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair.
Enfold in your special love, those who live alone enduring further isolation and lonliness. Dearest Father we pray fervently for a major medical breakthough in ME.
Bring your Divine inspiration to the researchers of this terrible disease, which is sweeping across your beloved earth .
May the mountain of ME be removed and thrown into the sea.
We are not allowed to stop dreaming. Dreams we have not chosen. Dreams that are sold to us as indispensible for our happiness. And we sleep carefree and dream. We dream and we buy to be able to sleep and to keep dreaming about more stuff. We sleep deeply warmed by the glow of the robotized masses, heads full of dreams that don’t allow rest.
Don’t even dare to stop having sweet empty dreams. Don’t even dare to stop breathing deeply and find yourself lost in the nightmare of other’s dreams, without being able to wake up; in a world that burns you and locks you into an illness that only allows you to dream that your nightmares disappear.
Tonight you will go to sleep satisfied, snuggled up to your soft-skinned, seductively perfumed life, where everything is inoffensive and perfect. Your dreams will, once more, banish me to the hidden side of the world, where light pierces and sound scorches the nerves, where dreams become a cruel poison that slowly kills me and drags me from nightmare to nightmare with no way out.
Your toxic dreams bury my existence under a stone slab made up of three words: Multiple Chemical Sensitivity. Your world of ideal dreams sentences me to live jailed.
It's like a wire brush being scraped along your nerves while someone draws their nails down a blackboard and a saxophone screeched the highest note possible in your ears.
It's every pain you ever thought possible and then some - burning, searing, scratching, itching, stabbing, pulsing, throbbing...Some of these are all the time, some are all over, some migrate in indiscernable and unpredictable ways around your body for no ascertainable reason and at a time of their own choosing.
It's a physical disconnect between the act of will and bodily desire.
It's like being scrappy - like there is no coherence to anything-you think something and then it is gone, it's short term memory loss of the inability to assimilate concrete thoughts in the first place or act on them or translate them from the brain to the action.
You try to do something and your body and brain lack the facility to carry it out. No amount of effort makes a difference.
It's the aerobics class "feel the burn" all over 24/7 when all you have done is try to type this or hold a book.
It's effort beyond what you would have thought possible before you knew it - every tiny thing takes a supreme effort unimaginable to most people.
At its worse it's a coffin - being stuck in a coffin in agonising pain, unable to sleep or talk or hear or feel anything apart from a disgusting malaise that feels like an imminent death that doesn't come.
It's grief - endless grief of illness made worse by disbelief and ridicule.
It's the grief of loss - for me the loss of health, job, home, love, financial and physical independence - it's an endless well of loss and longing and yearning and fear and trying hard to accept it all and not wanting to because nobody hears and nobody even attempts to understand apart from those who live it or live closely with someone who does.
I don't know if that makes any sense...
" I had no idea that modern medicine could allow such suffering."
I lost the ability to swallow, to speak, to see, to move.
I was doubly incontinent, often paralysed, tube fed and in unbelievable pain, only just relieved by high dose morphine. My nausea was so extreme that it had to be treated with drugs normally reserved for patients undergoing chemotherapy. I could bear no stimulation; light, sound, touch or another person's movement felt like an assault. At times I didn't recognise my own mother and was confused about where I was. And yet, despite the seriousness of my condition (which brought me close to death), it was hard to find much needed advice on dealing with the relentless symptoms, endless practical problems, intense emotions and strain on relationships. Over time, however, I learnt a great deal about the ways in which quality of life can be improved and a little more comfort achieved. So when I improved enough to use a laptop I decided to share this hard won knowledge - and anything else I could find out - with others also stuck in the nightmare. ". Emily Collingridge
“the book every patient with severe ME has been looking for” Vikki George, patient
“an absolute MUST read… it could literally change your life” Chris B, carer
“this guide has it all” Liza-May Marshal, patient
“the most comprehensive support document imaginable” Christine Hudson, carer
“a book no severe ME sufferer should be without” Frances Goodchild, patient
“a lifeline” Sarah McLeod, carer
“Finally everything you wanted to know about severe ME but were afraid to ask” Tarsam Singh, patient
"After many years of being housebound and bedbound with ME, Emily Collingridge has put her heart and soul into this book, which should prove an invaluable resource for other people in a similar position" Simon Lawrence, 25% ME Group
Written in consultation with over thirty individuals with ME, carers and professionals, it has been written to help improve the lives of all individuals with severe ME, whatever their age. A4 in size, it provides over 130 jam packed pages covering every conceivable aspect of life with severe ME. It contains specific advice for carers, partners, siblings, friends, doctors, nurses, occupational therapists, physiotherapists, dietitians, speech language therapists, psychologists/counsellors/therapists, social workers and home tutors. Topics covered include symptom and activity management, personal care, tube feeding, mobility, welfare, communication, hospital admission, emotions, coping as a family, friendships and entertainment. It includes numerous medications, types of equipment and sources of help. Sold at cost to enable multiple copy purchase,Severe ME/CFS: A Guide to Living is available at the bargain price of £5.99 (overseas buyers will need to add postage).