Emily Collingridge, severe UK ME patient, has died aged 30

This evening I read the very sad news that Emily, severe UK ME sufferer, has died.

She bravely wrote the book Severe ME/CFS: A Guide to Living.


Emily Rose Collingridge, 1981-2012



20th March, 2012 Indigo Jo
Today I heard the very sad news that Emily Collingridge, the author of the book Severe ME/CFS: A Guide to Living , had died. She passed away in hospital last Sunday afternoon, after a long admission. She was 30 years old and had been bedridden since her late teens, during which she had worked in a voluntary capacity for AYME (the Association for Young People with ME) and the family support charity, Home-Start. She did both of these jobs from her bed, but was forced to stop when she suffered a devastating relapse in 2005.

After her health improved marginally, she wrote her book on severe ME, with the co-operation of experts including Dr Nigel Speight, and numerous friends in the ME community including fellow sufferers and carers. It was published through AYME which sold it at cost to most of those who bought it, and at a subsidised price to severely affected members of AYME. The book received widespread acclaim, including from the 25% ME Group which is opposed to AYMEs position on matters such as the NICE Guidelines (the PACE trial had not been published by then). Having corresponded with Emilys mother Jane and others on the Facebook group set up to promote the book, it was clear that the Collingridges subscribed to none of AYMEs revisionist views about ME; they regarded it as a neurological disease and expressed dissatisfaction at the lack of biomedical research and the influence of Prof Simon Wessely and others like him. They also discussed the possibility of setting up special units for environmentally sensitive patients, including those with ME.

She suffered another major relapse after the book was published, and initially reported that she had found her own book to be of great value in managing it. She never recovered, and wrote of her terrible suffering on Greg Crowhursts Stonebird website. She remarked that, if you saw her, you would think she was about to die. She was admitted to hospital some time in late 2011, after being on the urgent list for some time, and her family turned over the group and promotion of the book to others.

Some articles that Emily wrote or contributed to:

I wont let M.E. curse ruin my life: how Emily, 18, is fighting back (appears to be from the Daily Mirror)

An interview conducted when Emily was 19

Fatigue Not Worst Symptom of ME from the BBC, quoting Emily as then AYME press officer

I had three years of nothingness, of hell from the Daily Telegraph in 2008, after the death of Lynn Gilderdale (it is Lynn, not Emily, in the accompanying picture)

From 6 to 30: A Life with ME , describing her condition since her last relapse, published last year

Emilys ME Awareness appeal, published here (among other places) last year

Emily also features in the book Lost Voices , published by Invest in ME, and a picture of her briefly appears in the film Voices from the Shadows . In the credits to this film, there was a message that some of those featured in the film had deteriorated inexorably during its making; her young death clearly highlights the urgency for serious biomedical research into the cause of, and potential cure for, this devastating neurological illness

Emily wrote this just over a year ago:


Emily's Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope."

By Emily Collingridge 2010-2011

Very heartbreaking.

Anyone who thinks this disease is just about a little bit of fatigue needs to read this.

Hmm, this doesn't sound like ME. Sounds more like neuropathic pain. See, for example:

Elliot Krane: The mystery of chronic pain

I have no words...just tears.

Hi nanonug, ME has neuropathic pain as a component. It also has other neurological signs. With no neurological signs at all, and no post-exertional symptom exacerbation, a diagnosis of ME is probably a misdiagnosis. In the UK for example CFS and ME are considered synonymous by many, yet ME has serious neurological signs, and to get diagnosed with CFS you only need prolonged fatigue.

On misdiagnosis, I can recall Simon Wesseley in a very old article saying the misdiagnosis rate of CFS is 70% in some hospitals. However it was interesting when a locum published in the BMJ (if I recall correctly) that he rediagnosed HALF of SWs patients as having other disorders when he saw them. This included, I think I recall, heart disease and asthma.

The second most common symptom in ME is pain. Hypersensitivity to stimuli is extremely common. Half of all CFS patients (an ME criteria was not used) have neuropathy (small fiber neuropathy). Three of four specialist autopsies show spinal nerve ganglia damage. Pain, neurological signs, and nerve damage are all a part of ME. Heart damage is common too, as is vascular damage. This is a multisystem illness.

What is one symptom you do not have to have to have ME? Chronic fatigue. Severe exacerabation of all symptoms, including severe fatigue, from minimal exertion, is the hallmark. If you have a mild case of ME, and pace yourself successfully, you might not be chronically fatigued most of the time. Hence its not chronic. Just try to do something over your limit though and it will be back.

Bye, Alex

It all sounds very much like ME to me. At my worst, I went thou 9mths in that state she describes including paralyses at times as I was so weak..

Many of the ME symptoms will put one into that state...just the ME symptom where one is neurology overwhelmed by stimuli can be enough to go into such a state.. a state in which to be washed is unbearable even if one can stand the pain of being touched.

Not just paralyses or weakness and the symptom of overload, may cause someone to be unable to look out of window but there is also the symptom of light sensitivity in which many severe cases have to be kept in darkness. (I couldnt tolerate any light at one point and had to stay in darkness, nor being spoken too..as sound, it caused almost seizures). I can completely understand not being able to be moved.

With severe ME.. the body being ones prison is the best way to describe it. EVERYTHING is unbearable for all different kinds of reasons.. EVERYTHING starts triggering off complex of symptoms. Just ones eyes seeing another persons finger move can be too much for ones brain and set off symptoms from seizures to a far worst headache, head spins cause their finger moved too fast. I couldnt always be spoken to and if I was, I couldnt often understand language.

I needed silence, complete stillness.... darkness... or I crashed worst into a comatose state in which I didnt wake up for 3 days.

What we read here, would only be a small part of her ME story and symptoms. Im sure along with the ones she mentioned, she would of had lots of other symptoms not mentioned in this post. All we are seeing here, is a tiny glimpse of her whole suffering.

Note.. it isnt pain which made her keep her mother away, but other symptoms (probably the brain and neurological overload being triggered by "mothers presence and movement and sound) which leads to major symptoms and more of a crash may of been a big one affecting her in the way above.. to the point where she couldnt have mother come near and administer her pain killers.

Im so glad she was able to share how it affected her as I do think there is too little knowledge of the effects of severe ME.

Im so so sad she's passed, I cried a lot reading this post but also relieved for her. One part of her would of been craving to excape the ME nightmare. She at least has that now.. freedom from the ME prison.

Condolences to those who knew her.

ICC ME Criteria are here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full#t1

Relevant bits include:

However, when I was more mildly affected, a lot of these symptoms weren't major problems (once I lived a relatively quiet life, in a relatively quiet environment, etc.).

Then you have a lot to learn about ME.

Thank you for the link, nanonug.

Unfortunately, it sounds exactly like ME to me. Severe neuropathic pain is common in severe ME as is Emily's exquisite sensitivity to normal stimuli.

I send my very deep condolences to her long-suffering family.

Yet another life is snuffed out by the disease that is effectively ignored in the UK. Those responsible for this, who block biomedical research into this devastating disease, should hang their heads in shame............................yet again.

C.G.

That is tragic. What a loss.

You may like to read Emily's story in her own words below:


From 6 to 30: A life with ME by Emily Collinridge, author of The Essential Severe ME Handbook
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.

My Symptoms

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

<>Emily Collingridge, 2010

I am so saddened to hear of Emily's suffering. What an amazing and brave person she was for always trying to help others. It's so important that we have the words of severe M.E sufferers such as Emily to highlight the devastating nature of this disease.
Justy.

No words to describe my sadness & anger at this news. How many more have to suffer before this terrible illness is taken seriously

Thanks Alex for explaining it for nanonug far better than I could. I remember the bad days when just a gentle shower felt like somone was beating me with a spikey hairbrush, any stimuli, someone talking, my husband screwing up a carrier bag was torture, any direct light, and on and on with symptoms like this so many of us with ME have experienced.
My heart goes out to Emily's family in their grief, to lose a daughter at this age, is tragic, and having watched her suffer so much for so long.

This is such a sad story. Nothing else to say apart from Rest in Peace Emily.

In regards to the pain..
as I have previously said, I experienced two weeks of low blood sugar at whatever the hell ti was that triggered my ME, and in youth, meningitis
I can assure you that the sensations/pain etc of ME is VERY like some of that, epseiclaly low blood sugar

Sensitivity to sound/light
crankiness
terrible headaches etc


As for this lassies' death
may she rest in pace

Requiescat in pace, Emily

This makes me deeply sad. The only comfort is knowing that her torturous pain is at an end, after nearly 25 years. But it makes me cry to think that such a courageous, big-hearted young woman had to die without ever regaining the good health she longed for. It makes me angry that 25 years later we aren't much further along.

How many deaths like this will it take until they stop saying that people don't die from ME/CFS? How many children must have their lives interrupted and filled with pain? How many more people have to suffer before they stop the lies? How many...

It's just so wrong.

Thank you, Emily, for bearing witness. Thank you for writing your book to help others with severe ME and the people who care for them. Thank you for your inspiring courage and will to live. Requiescat in pace.