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The Crime of CFS


To misdiagnose a patient suffering from Myalgic Encephalomyelitis with Chronic Fatigue Syndrome is a crime. CFS is nothing more than “lazy doctor syndrome” diagnosed because the Dr is inexperienced, can’t find the real problem, or just doesn’t care. The 2 stories in this note focuses on Shophia Mirza as told by her mother Criona and Lynn Gilderdale. There has been sufficient time since the death’s of these 2 young women for the laws to have been changed forcing the Dr to either diagnose correctly or refer the patient to a Dr who will. To do neither is a crime. We are not Lab Rats.

Sophia Mirza

Sophia was the youngest of my four children. As a child she had chicken pox. When she was 17 she was a passenger in two separate car crashes. Shortly afterwards, she was hospitalized with suspected meningitis and was given a lumbar puncture. At 19 she went travelling and working in Africa, before which she had to have multiple vaccinations. Whilst in Africa she had two doses of malaria.

In 1999, Sophia got the ‘flu. She could not recover from it. By December of that year she could only leave her bed to have a bath. In June 2000, she was moved into the tenth floor of a high-rise block of flats. There, she would have a bath each day where she relaxed for about an hour. Within three months she “crashed” and had become bed-bound. I could not understand why, as she had done nothing different during this time.

I then heard about a carbon monoxide detector. I bought one and sited it near the ventilator shaft in the bathroom. It registered positive ++. I informed the council and the gas board who sent a man around to see it. He flashed a torch around in the shaft and said that it was fine. He did not seem to understand the seriousness of it and treated me as if I were invisible. From that point onwards any sort of chemical, such as soap, powder, perfume, detergent, cleaning liquids, car fumes, etc. sent Sophia into further decline. She was also badly affected by electromagnetic fields, which also included human beings. The block of flats was filled with TVs, radios, etc. She had also the multiple symptoms of ME including severe pain. She became even more ill, if that were possible. She also felt the building swaying in the wind which, in turn, escalated her symptoms. I had not realised that architects build in a “sway factor” to tall buildings in order for them to remain stable.

Sophia’s room had to be completely “blacked-out” and she also wore eye pads as any form of light seared her eyes and affected her in other ways. She had to wear ear plugs as any noise or sound, even the sound of a voice, made her even more ill. She could not bear to be touched for the same reason, even though she craved the human touch and the comfort it gave. Since that time she had been unable to have either a bath or a hair wash as water too magnified her symptoms. She was only able to lie on her right side. She had, for most of this time, been unable to speak. She had been unable to read or write, listen to the radio or have any electrical gadgets in her room. She was unable to have visitors. Her G.P. was at a loss as to what to do. The G.P. suggested that I put Sophia “away in a home and get on with the rest of my life”. I did not agree. Years ago, I had nursed patients with all sorts of diseases; never had I seen anyone so profoundly ill in so many diverse ways, as Sophia.

During one of my visits to Sophia’s G.P., I was told that Sophia had made herself ill and that I was keeping her ill and as long as I was looking after her she would never recover. The G.P. said that it would be better with me out of the flat and independent carers installed. In 2001, the G.P. approached an M.E. clinic, telling me, for legal protection of the G.P. and the surgery. Sophia asked me to research the clinic, which cost thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started. I spoke to a couple of ex-patients who were afraid to have their names used; they said that this clinic was run on the lines of mental health and used Graded Exercise, although it claimed to be a neurological clinic. They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to the clinic.

By 2002, Sophia had to eat every 20 minutes, else her symptoms would escalate to even more severe heights. The doctor told me that a number of psychiatrists had been approached who had not wished to be involved in such a case adding how lucky we were to finally get one who would agree. I voiced my fears that Sophia would be removed from her flat; both the doctor and subsequently the psychiatrist assured me that this would never happen. This proved untrue, later.

I had already given the G.P. copies of Margaret Williams’ “Denigration by Design” and “Information for Clinicians and Lawyers” by Marshall, Williams and Hooper; I now gave copies of these to the psychiatrist. It would appear as if neither of them had even read these.

The psychiatrist visited Sophia for 20 minutes one morning. The psychiatrist gave her no physical examination, which I found strange, given that her blood pressure was 80/60 and was unable to understand that Sophia’s “clock” was constantly on the move and that mostly her day-time was in our night-time. The psychiatrist did not seem to understand any of her myriad symptoms and the following day gave a lecture on M.E. to a large number of doctors; never having asked Sophia for her consent. The psychiatrist wanted me to be present, though I had reservations, and gave everyone there a handout about Sophia and our family, (which I only received later as part of the pack of Sophia’s notes).

It read like a novel with some horrendous so called “facts” that I did not recognise as a true representation. I was also shocked at the misrepresentation of Sophia’s symptoms to the doctors and started to object, at which point I was ushered out of the room.

The following week the psychiatrist asked to see me at the hospital, in a manner that I interpreted that would not benefit Sophia if I refused. I had no option but to comply. I was told that if Sophia refused to go to the M.E. clinic, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act, then added that if I tried to stop this, then the psychiatrist would go to the courts to have me removed as the nearest relative. Furthermore, if I did not open the door when they would come to take Sophia away, that the police would be called to “smash the door down”. When I asked how much better Sophia would get by these proposed actions, the reply was given that it was “none of your business, that it was for the courts to decide”. The psychiatrist wanted to arrange for me to see a psychologist so that I could understand the good, that the psychiatrist, was doing to Sophia. I refused.

From Jan 2003, Sophia had started to improve; she was able to tolerate some light, talk, sit up and have a few visitors. This continued and I wrote in detail to Sophia’s doctor, informing of the progress. The GP did not want to know and said that Sophia could no longer remain a patient and that Shophia was being passed over to a colleague. Sophia asked for copies of her notes. These were given at a full price of $50 having first been abridged in case it would affect Sophia’s “mental health”. Despite no longer being her doctor, this very same doctor, along with the psychiatrist and social worker tried to enter the flat to section Sophia in May 2003. They were not allowed in. I then phoned the doctor and said that Sophia was devastated and that she did not want to be sectioned and that she was willing to go into a different clinic. The doctor said “it’s too late for that now”. The die had been cast; they were determined on their course of action.

The doctors, social workers, chief executives, courts and others were well informed in writing, by me, of all the events that were about to unfold in early 2003, and yet, Sophia was “sectioned” as a result of exercising her right not to go into a particular ME Clinic. There are many similar calamities being reported of young M.E. patients being separated from their families behind the closed doors of Family Courts; and families being torn apart. The children and their families appear to have no redress.

During 2005, I was collating material to give to The General Medical Council. Before she died, I told Sophia that I wanted “to go public” so that others could possibly be saved such suffering. She answered … “then it will all have been worth it” … these were her last words. After Sophia died, I asked, as her “personal representative” to see all her notes. This was refused. I was told that I would have to go through the courts in order to access them.

I have read suggestions that 95% of professionals and public do not believe that such an illness is possible. Of the people who dealt with us, about 50% said that Sophia was making herself ill so that she could get attention. The rest said that I was keeping her ill so that I could have some meaning in my life. A mixture said that she just wasn’t ill at all, that it was all “in the mind”. I do feel that I owe it to Sophia and all the other sufferers and their families not to allow this story to be airbrushed out of history. I have over 190 letters written between 2000 - 2003 to back up everything that I have said. In no less than 66 of these, was it said that Sophia has severe ME.

Following the loss of Sophia, I and my family feel we are free to speak the facts as experienced by Sophia. Whatever we say or write now will not bring her back to us. Sophia wanted to get better and live, but she needed to be able to live as a “free person”, not ruled by fear, incarcerated behind the locked doors of a mental hospital. This was not allowed. In order to get “help”, she had to agree that she was mentally ill; this she would not do. She lived her beliefs. I have never in my life known a braver or more courageous person than Sophia. She was an inspiration to us all. I do believe that every parent would say exactly the same about their child who is suffering from ME. It was Sophia’s wish that her living and suffering should not be in vain, but that it would help others. Only time will tell.

Between January and June 2003, I wrote letters to the Acting Chief Executive of the NHS Primary Care Trust and to many others, making them aware of the situation and how the World Health Organisation (WHO) classification of ME, as a neurological disease was being ignored. No replies were received from the Trust directly. I made a video of Sophia, which I gave to a solicitor. The solicitor visited Sophia and assured both of us that there was no way that Sophia fulfilled the criteria of a person who needed sectioning.

In July, the professionals returned - as promised by the psychiatrist. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital. Despite the fact that she was bed-bound, she reported that she did not receive even basic nursing care, where her temperature, pulse and blood pressure (which had been 80/60), were never taken. Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned. The nurse asked me to cook for Sophia as the processed hospital food made Sophia more ill. Sophia also had to deal with all the nurses constantly going into her room and talking to her.

The psychiatrist made it quite clear to Sophia’s solicitor that Sophia would not be released. Sophia’s solicitor then requested a tribunal, which was held two weeks after Sophia’s sectioning. The tribunal lasted 8 hours. They released Sophia. It was too late; the damage had been done. Sophia relapsed, not to where she had been before, in Spring 2003, but to a hell-hole to which she had never been. She never recovered from this “treatment”.

A few weeks later, her G.P. removed Sophia from the practice list of patients. I visited the new G.P. who Sophia had been allocated to, and asked what their personal views on M.E. were? The response was that it was a mental illness, but that the new G.P. did not interfere with the patients, but let them “get on with it”. I thanked the G.P. and left the surgery. From that point on, Sophia never asked to see the doctor, neither did the doctor ask to see her. The hospital sent a letter saying that we could now have copies of Sophia’s notes - we had been trying to get them for over 8 months. Within the letter from the hospital they said that the psychiatrist we had seen was no longer working there. Within these notes we saw correspondence from Sophia’s first G.P. (who was not mine), to the psychiatrist, asking for me to be sectioned !! I had not realised just how far that G.P. was prepared to go in order to have independent carers looking after Sophia.

We tried to take legal action. Funding was refused on the grounds that … “there was insufficient evidence of clinical negligence … and that there were no significant human rights issues which would justify the use of public finds to pursue this matter ... There is no further right of review against this decision”.

Between 2003 -2005, Sophia struggled hourly / daily to get back to the point of health she had prior to her incarceration. By July 2005, it seemed as if she had started to progress. In September, this monster of a disease took another turn. Sophia had become allergic to any and all types of food. Physically, she could eat, but the reactions were so severe, e.g. knives stabbing into her head, that this precluded her body being able to accept the food. Five weeks later, any sort of water or liquid had similar devastating effects on her; her glands would balloon-up and she felt as if the circulation in her legs was being cut off. She could only bear about 4 fluid ounces of water a day, which was used to moisten her mouth. At the end of October she got an ear infection. Her head and neck swelled-up like a football, she was in agonizing pain.

During these weeks, I asked her on a regular basis if she wished me to call a doctor? Her answer was always the same, “no”. Way back in 2003, when she knew that the doctors were treating her as a mental patient, (and ignoring what the WHO said about M.E), we discussed the subject. She asked me never to let a doctor near her who did not concur with the WHO. I promised.

From Tuesday 22nd November, Sophia could not move an inch, neither could she sleep. On Friday 25th she died. I did not cry. I gave thanks that I had been able to keep my word that she would never be locked-up in a mental hospital again. All my grieving had been done during the previous 6 years and especially during the last 9 weeks, when I used to walk the streets with tears streaming down my face, knowing that there was nothing that I could do to help or comfort Sophia. Family and friends came to say their goodbyes to her. Four hours later, I phoned the new doctors, only to be told that Sophia had been removed from their list since July of 2005. I said that neither Sophia nor I had removed her name. They did not seem interested. The doctor did not come out. I then called the ambulance men, who in turn called the police and the coroner’s staff. The ambulance and police staff were kindness itself.

Those last 9 weeks were something else. I had to take the responsibility for implementing Sophia’s wishes. By virtue of this monster of a disease, she still had to remain in blackout conditions and in isolation as to do otherwise would automatically tip her into another unknown hell. Even when I knew she was in agony and that she was virtually on her death-bed, she could not have the comfort of me or anyone even holding her hand or sitting with her. I had to know that my child was dying and do what caused her least pain, irrespective of my own feelings. We each had our own agony, as did the rest of our family and friends.

An autopsy was performed on Sophia. No cause of death could be found. A fortnight later more tests were carried out with the same results. Her heart was then sent away for testing which still showed up no abnormalities. Simon Lawrence from the 25% ME Group asked us if we would consider some research being done on Sophia. We readily agreed as we wanted others to benefit from Sophia’s life and death. Sophia’s spinal cord was taken away for research by Dr Chaudhuri in Romford and Dr O’Donovan in Cambridge.

Permission for this was granted by the coroner. I understand that the coroner was unusual in allowing such research to be performed. Everyone at that office was most helpful to the two doctors involved. For this I am so grateful. The final tests have yet to be completed, but up to the present time the results of Sophia‘s spinal cord show “unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to brain through spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).”

Sophia’s Medical Records:

Social Services Records:

Lynn Gilderdale

Lynn was sporty and athletic and excelled at ballet. She rode horses and was an accomplished musician. After a routine TB inoculation, Lynn never recovered and then flu, bronchitis, tonsillitis and glandular fever all occurred within three months. A psychiatrist took over her case when an ME specialist referred her to him as he never saw such a severe case of ME. The psychiatrist misdiagnosed her with hysteria. She worsened and ME confined her to her bedroom and she was unable to move her legs, swallow or eat and at times recognize no one. She could no longer speak. She lived with tubes in her nose, chest and inner thigh. At age 20 she went through menopause. During her last hospitalization she picked up four infections. In 2007 she attempted to take her own life.

Lynn was not put through Graded Exercise Therapy but was put on an "activity regime". This consisted of doing certain amounts of exercise, schoolwork and socializing regardless of how she felt.

In the months leading up to her death in December 2008, Lynn Gilderdale kept an online diary available only to her close friends and family - where she chronicled her miserable life trapped inside a body paralysed from the waist down by ME. It was typed out agonisingly slowly on a hand-held computer then transferred to an internet site. Headed with the words 'DNR (Do Not Resuscitate), it described how desperate she was to end it all and the harrowing dilemma faced by her parents who, while desperate not to lose their daughter, were all too aware of her wish to commit suicide.

Here are extracts from Lynn's journal - a deeply poignant testimony to just how unbearable her life had become.

Early 2008

“OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons and even if you don't agree with it I hope you won't judge me too harshly. Here goes, (deep breaths). Basically I think some of you have known for a while I have had enough of this miserable excuse for a life, of merely semi-existing for the last 16-and-a-half years. I have had enough and I want to die. This is no whim and certainly not just because of the reactive depression diagnosed a few months ago. I am no longer on anti- depressants because they weren't doing anything for me.”

“I really, really, really want to die and have had enough of being so sick and in so much pain every second of every day and, basically, one serious health crisis after another. I am so very, very tired and I just don't think I can keep hanging on for that elusive illness-free existence, that ever-diminishing hope that one day I will be well again. This is something I have thought long and hard about. I'm sure it's what I want. I have discussed and continued to discuss it with my parents at great length. Although they obviously desperately don't want me to go, they can see I have just had enough and understand why I can't keep hanging on for much longer. A few months ago, some pretty extreme situations arose and I was finally tipped over the edge.”

“I tried to end my life by sticking a syringe of 24 hours of subcut (subcutaneous) morphine, which normally goes in my 24-hour subcut butterfly needle, straight down into my veins using my Hickman line and simultaneously a syringe full of air. This was not a desperate cry for help, it was a serious attempt to end my life. It should have been enough to kill a grown man. No. it didn’t finish me off. I have become tolerant to morphine after being on it for years”

“I am so very, very tired and I just don't think I can keep hanging on for that elusive illness free existence”

“All the overdose did was render me unconscious for a few hours until I finally felt Dad shaking me awake. That was really the first time my parents knew how depressed I was. I had managed to hide it by using my time-worn, fake-happy face, when they are around. I begged my parents not to tell the doctor what I had done. But I was put on anti- depressants. Drugs have stopped me from crying all the time, but it hasn't stopped me from my desire not be on this planet any more. Nothing can change my mind. I have since promised I won't try to kill myself again in secret.”

“Injecting morphine is the only reliable suicide method I have access to myself. There's no other possible way to do it on my own. Dad was quite heartbroken. He said: 'I understand, but what would I do without my best mate?' This made me sob even harder than I already had. After talking to me for ages, they both were extremely reluctant but agreed that if something life-threatening did happen to me they they would inform the doctors and nurses that I didn't want to be revived in any circumstances.”

“I refuse to go back for more treatment. I know there is a slim chance that I could fully recover and live a relatively normal life but even if I wake up tomorrow, I still won't be able to live the life I dreamt about living. My ovaries have packed up - I won't be able to have children, my all-time favourite wish. I am already 31 years old. By the time I have found the man I want to have children with I will be far past the age. I cannot see myself ever being well enough to do any of this. Also, my bones are so osteoporotic that every cough and sneeze could cause a fracture. How can I live the life I have dreamed of; swimming, sailing, running, cycling. The kind of life I had before it was taken away from me at the age of 14.”

“My body is tired and my spirit is broken. I have had enough. Can you understand that? I hope you can, I really, really do. In addition to not wanting any life-saving treatment, if I am ever presented with an opportunity to leave this world, I have to admit I will grab it with both hands. I understand people think I am just depressed or worse - suicide is far from easy in my opinion - or they think it is ridiculous to be thinking of suicide when there is still a chance I could recover. I was 30 last year, the desire to leave all this pain and sadness behind me has nothing but increased. I want to die so, so much.”

“Mum and I have spent hours on and off discussing everything, despite her doing her best to make me see things differently. My resolve to leave this life has done nothing but intensify. I am sorry. I know this may be a shock to some of you. Try to put yourself in my situation. Every second-of life in intense pain, feeling permanently and extremely ill, not just lying in a bed resting but 100 per cent reliance on others to care for my basic needs.“

“Even if I wake up tomorrow, I still won't be able to live the life I dreamt about living”

“I have survived because of tubes of medicine, pumps and drugs. Without all this modern technology I wouldn't be here. Imagine you lived in one small room, in one single bed for 16 years since the age of 14. Imagine being 30 years old and never having kissed someone properly. Yep, I am that pathetic 30-year-old virgin that everyone ridicules. Imagine having the painful bones of a 100-year-old woman unable to move without risking a fracture. Imagine being unable to get the spinning thoughts out of your head, other than by slowly typing emails.”

“Imagine not being able to turn yourself over in bed or move your legs. Imagine having to use a bed pan lying down and having your mother wipe your bum for you. Imagine having never been in a pub or club at 31 years old. Imagine never having been able to fulfil one thing above all else - that thing that should be a right for all young women, the right to have a young child. I know someone women are unable to, but it doesn't stop my heart from aching and the need to hold my own baby. Imagine being imprisoned inside the miserable existence that is your life. I don't have to imagine that. My body and mind is broken. I love my family. I have nothing left and I am spent. How are Mum and Dad coping with all this? They are utterly, utterly heartbroken, naturally. Although I fear they won't get over losing me and they don't want me to go, and despite all the pain they must be in every time I discuss this whole thing, they must understand why I've had enough of this life and can't keep hanging on. They both said they would either die or feel the same. I am so lucky to have incredible parents. I desperately want to die. Mum and Dad know I have made up my mind. They have made sure repeatedly that this is what I truly want.”

“And now I'm not going to resist temptation if a way of ending my life falls into my lap. There's a quiet dignity and a resolution to make this time special. Both of them have always been there for me. Even though I can't imagine how hard this must be for them, obviously they won't want to lose me but they can't bear for me to suffer any more than I have - that's true unconditional love. I will never be able to thank them for putting my needs above theirs. However sad it is, it's going to be my time to go very soon.”

“My body and mind is broken. I love my family. I have nothing left and I am spent”

“I am afraid I can't lie. I still crave suicide with every fibre of my being. I promised my parents that I won't attempt to do it in secret again. If the chance falls into my lap I will grab it with both hands. Mum regularly goes through everything with me. I never waver, I just become more and more sure as time passes. I have always stated that if I was unable to make a decision myself the power goes jointly to my parents. I trust them implicitly with my life and death. I know they won't do the selfish thing in keeping me here purely for themselves.”

Lynn’s Live Journal was the one place where she felt safe uttering her deepest, most troubling thoughts. Using a ­specially-designed handheld ­computer, and ­adopting the pseudonym Jessie Oliver, it was on the internet networking forum that she shared her desire to die with her closest friends. After suffering a severe form of ME which left her bedridden and unable to speak or feed herself for all of her adolescent and adult life, she had decided she was never going to recover, and wanted to ensure her life would end before total degeneration robbed her of all dignity.

The revelations about her decision were made to her parents, Kay and Richard, and her small group of friends in the last two years of her life. To those who were invited to share her innermost thoughts it was a painful, yet understandable, choice. Many of them were girls and young women who suffered the same illness; some, such as Lynn, had been confined to their beds and housebound for years as a result of ME.

"She did mention to me and very few others that she had an overwhelming desire to die," said Emily Levick. "I recall the time I first read about it. I cried, and then immediately texted her, as she was so afraid that her friends would think badly of her for it, and I wanted to reassure her that I could never think badly of her.”

"She had battled for so many years, and was so desperately tired. It was quite literally heart breaking to read something like that, but I did understand her reasons. I believe I would have felt exactly the same if I were in her situation." Her mother and father were kept well informed of her decision. A Do Not Resuscitate note was placed on her ­medical notes under her own wishes and she later went a step further and directed that a "living will" should be drafted in which she stated her wish not to be resuscitated or subjected to any medical intervention if her quality of life was too poor. "She knew it was very difficult to talk to me about that subject because no one wants to hear it coming from their ­daughter," said Richard Gilderdale, a former policeman. "I always used to say to her I was a coward because I listened to what she said and then she would always look at me with a knowing look in her eyes and say, 'Look, it's never going to go away, dad.' Her feelings were that she had made up her own mind that she couldn't carry on."

Yet despite this clear statement of her intentions, and fresh guidelines from the director of public prosecutions to reassure relatives who help the terminally ill end their own lives, Kay Gilderdale was brought before the criminal courts this month charged with the attempted ­murder of her 31-year-old child. After she was acquitted of attempted murder today amid applause in court, the trial judge joined campaigners, friends and lawyers to ask why was she ever prosecuted? Kay Gilderdale was the second mother this year to face a criminal trial for the death of her child. Last week Frances ­Inglis was convicted of murder after giving her brain damaged son Tom an overdose of heroin. Lawyers say the Gilderdale case highlights the fudge over the law on assisted suicide in this country.

While the DPP's guidelines are ­supposed to reassure relatives of the terminally ill that they will not be prosecuted for assisting suicide, they do not address cases where the sick person is so ­incapacitated that helping them involves the relative taking direct action to end a life, said Saimo Chahal, the lawyer who represents Debbie Purdy, whose legal challenge led to the latest guidelines.

Lynn's friends say it would have been beyond her comprehension, having expressed her wishes so clearly and her admiration and love for her parents so fervently, to have ­foreseen that the mother who tended to her every need for the 17 years of her illness, would be prosecuted for following her wishes and helping her to die.

A criminal judge, well used to the difficult balancing act when considering any assisted suicide, questioned the necessity and wisdom of the prosecution six months before the Gilderdale trial at Lewes crown court, East Sussex. Pointing out that the accused had admitted aiding and abetting suicide, he invited the Crown Prosecution Service to drop their case of attempted murder against her.

"It strikes me," he said, "that it may not be in the interests of justice to pursue [this] when the defendant has pleaded guilty to a substantive count like that. Assisted suicide is a serious charge that appears to address exactly what happened. Wouldn't it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo-jumbo?" For the last fortnight that legal mumbo jumbo has been played out in court. Kay Gilderdale, a dignified women has sat smartly dressed in the dock listening intently as her actions were depicted by the prosecution as an attempt to murder her daughter. She was only saved from a charge of murder because the toxicology tests had not been clear as to which dose of morphine or lethal drugs – the one Lynn administered to herself or the one her mother administered had killed her. Behind her in the public gallery family members listened as the details of Lynn's existence were explained to the jury.

Until 14, Lynn had been a bright and sporty schoolgirl, who lived with her family in Stonegate, East Sussex. But after a BCG vaccination she was struck down by ME and within four months was unable to move from the waist down. As the illness progressed she became bedridden, lost her ability to swallow and was fed through a nasogastric tube. She communicated through a sign language, which she developed with her parents. In later years she used her computer to communicate online with fellow sufferers, building up a network of friends.

Lynn would frequently describe her fervent love for her mother in emails and texts to friends online. In one, written during one of her many hospital visits she said to a friend: "You asked if my parents are able to visit and the answer is they actually never leave my side. One of them's ALWAYS here and mum sleeps here too. "It's because I was treated so horrifically when I was first ill... so many mistakes have been made with my care here... mum/dad continue to do everything for me."

The dedication of her mother extended to every aspect of Lynn's life, according to friends. On her 31st birthday in September 2008, three months before her death, she told her mum how very much she would like to hear her online friends' voices, as she couldn't physically meet them. Her mother sent emails to a number of friends to arrange the surprise and on the day Lynn watched videos prepared by some friends, and listened to voice messages from others. "It meant the world to her," said a friend.

As the years went on her communications online had become increasingly desperate until in 2006 Lynn began talking about ending her life. "I'm tired, so very, very tired," she wrote in one communication. "I can't keep hanging on to an ever-diminishing hope that I might one day be well again... "My spirit is broken", she said, adding she would seize the opportunity to leave the world "with both hands".

Her final hours and the acts which led to Mrs Gilderdale being charged, began at about 1A.M. on Dec 3rd, 2008. She picked up a syringe of morphine – which she used daily to cope with the pain – and injected herself . But the dose was not enough and in the early hours Lynn begged begging her mother to help end her pain. For an hour Kay Gilderdale tried to persuade her daughter that now was not the time, but her decision was made and in the end the mother opted to help her child carry out her wish. Over the next 28 hours Kay Gilderdale neither ate nor slept as she helped Lynn die. At about 3am she handed Lynn two syringes each containing 210mg of morphine, which Lynn administered herself. When it became clear the morphine was not enough, and with Lynn now unable to administer anymore herself, Mrs Gilderdale searched the house for tablets. She crushed together anti-depressants and sleeping pills with a pestle and mortar and inserted them into Lynn's nasogastric tube.

At about 2am on 4 December ­Gilderdale gave her daughter two or three doses of morphine and later gave her three syringes of air, in an attempt to cause a fatal lung embolism. She also made a desperate ­telephone call to Exit, the assisted suicide helpline, to ask for help. At 7.10am that day her daughter died and the exhausted mother sent her ex-husband a text saying: "Please can you come now, be careful, don't rush."

Hours later Kay Gilderdale was arrested on suspicion of murder.

From the moment her daughter died Kay Gilderdale admitted what she had done. In a conversation with the family GP, notes of which were written for the police, she took the doctor through the last 28 hours of her daughter's life. She formalised this admission at a court hearing last July, admitting aiding and abetting suicide, which carries a 14 year maximum sentence. Despite the challenge by the trial judge the prosecution insisted it was in the public interest to charge her with attempted murder. Simon Clements, head of the special crime division in the CPS, said: "Once the evidence had identified that this was a case of Mrs Gilderdale, on our evidence, trying to kill her daughter, we were into the territory of attempted murder.

"So clearly our policy has always been that people are not entitled to take the life of another person, however sympathetic one might be to the circumstances and the state of health of the person concerned. It is a desperately sad case but we have to apply the law as it stands unless parliament changes the law." But Chahal said the case exposed a flaw in the law which had to be addressed.

"The law does not recognise the concept of a mercy killing attempt," she said, "which is what this case is about – a request by a daughter to a mother to assist her to die, in circumstances where the daughter … was not able to complete the act of suicide. There really needs to be a distinction made in law between somebody like Kay Gilderdale, who was acting out of love and compassion for her daughter and a cold blooded murderer taking a life."

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