ME drove my daughter to suicide
by ANDREA PERRY, femail.co.uk; July 21, 2012via Daily Mail
Fiona Smith had a bright future ahead of her as a landscape architect when she was struck down with the debilitating illness chronic fatigue syndrome - also known as ME
After a courageous nine-year battle to get help for the illness, which left her severely disabled and often bed-ridden, Fiona could take no more and took her own life in November last year.
She was just 31.
Now her mother Trish has spoken bravely for the first time of the daughter who she described as 'my best friend, adviser and confidante.'
Mrs Smith, of Bristol, broke her silence at a launch of a new report which revealed there is a major suicide risk amongst ME sufferers.
The report reveals a catalogue of failure and discrimination through the NHS and social services towards the 150,000 patients diagnosed with the illness.
The document highlights, in particular, the problems encountered by people who are most severely affected by CFS/ME. Many of those involved in the study have been confined to their homes or even bed-ridden for up to 10 years.
Conducted by Action for ME, the leading UK charity, it is the largest study published into ME and questioned 2,300 sufferers.
It found that:
• 51 per cent had felt suicidal as a result of the extreme pain of the illness coupled with a lack of support from the medical profession.
• 65 per cent had received no advice from their GP on managing the illness.
• 33 per cent had to endure a wait of more than 18 months before being diagnosed with ME, despite evidence that early diagnosis can help recovery.
Despite displaying classic symptoms of the illness, it took 19 months before Fiona Smith was suspected of having CFS/ME and a further two months before a formal diagnosis was confirmed. She became ill in February 1992 after a flu virus and shortly afterwards was so ill that she had to withdraw from her post-graduate diploma course.
Fiona deteriorated, becoming bed-ridden in July 1994 and often had no voice, was weak and in so much pain that she could do little for herself.
Over the next two and half years she improved very slightly but still was mainly bed-ridden and unable to wash or feed herself. Without professional advice she plateaued at this stage for two years.
After a battle with her local health authority, who initially refused funding, she was referred to an in-patient unit in Romford where she made a slow but steady improvement. But a series of relapses set her back nearly five years.
She had become so weak that she was too frail to attend six-monthly hospital appointments with the local consultant and instead her mother went to update him on Fiona's state.
He could offer no advice and in summer 2000 he stopped seeing CFS/ME patients and said that Fiona's GP would have to oversee her care. The GP had not seen another case as severe and was unable to help.
Mrs Smith said: 'By last November the future looked bleak. Now dependent on others for virtually everything - despite nearly nine years of day to day struggle to overcome the illness - it seemed that Fiona decided, quite suddenly, that she had had enough.
'Somehow she found the courage and the strength to hang herself from the curtain pole in her room.
'Why is it that some patients, despite maintaining excellent personal motivation and accepted as not having psychological problems or depression, steadily deteriorate to indefinite total dependency on carers?
'Why do they fail to respond to hospitalisation or professional interventions, which help others?They still seem to be a mystery to the medical profession but inevitably become forgotten as new patients emerge. I feel this category is seriously neglected and badly needs highlighting.
'The undertaker in our small village had handled three other ME suicides in recent years.
'There are many more like Fiona who are still patiently struggling and we must help them.
'The absence of a cure can be accepted but there is no excuse for such patients to feel forgotten and invisible as so many do.'
The Chief Medical Officer working group on CFS/ME is due to report on the most effective methods of treatment later this year.
Tony Wright MP, Chairman of the All Party Parliamentary Group on CFS/ME presented the report at today's launch.
He said: 'ME is a complex, much misunderstood illness. My post bag is full every week with people around the country in despair because of this illness. There has to be more money put into research.'
The illnesses cost the public purse £4 billion each year. Yet just £250,000 is spent on research.
Three times as many women suffer CFS/ME than men. Many girls under the age of 18 contract the condition, but there is no research carried out into the illness in childhood.
Read more: http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html#ixzz21HNf3iJN
Very sad news for the ME community: Emily Rose Collingridge died on March 18, 2012 after a lengthy hospital stay at the age of 30. No other details have been released. Emily was a strong advocate and wanted her experience to help ease that of others with severe ME, leading her to author the book Severe ME/CFS: A Guide to Living
. I include an excerpt from our last correspondence via her connection to the outside world - her Blackberry- to show in her own words what a shining star she truly was, and a bit of what she's had to endure during her illness. May Emily be at peace, and may all the awareness she has worked so hard to create continue to grow. My deepest sympathies to her family."Like you I'm sure, I am so pleased to think that my experience of severe ME will lead to others having a somewhat better time - and that's why I choose to make as much effort as is humanly possible in relation to awareness raising and the provision of information (though often it's very far from good for my physical health, it is good for my mental health - apart from when the frustration of campaigns etc not achieving change leads me to feel despondent over the situation for people with ME despite knowing that small progress does occur and, though we want and deserve much more, I realise that any improvements are nonetheless important and a crucial step towards achieving real positive change) . I know the fact that others also have done so before, or in addition to me, has definitely been of great benefit for me.
Your experiences have been incredibly similar to mine! As you probably know, I also improved to the point of being able to walk a little in the house with a walker before relapsing as a consequence of a hospital stay. Not only has my ME at its worst, as with you, made it seem to me and those around me that I must be dying, complications of my illness have actually brought me very close to death in reality - I could so easily not be alive today and I would die now if it were not for the very powerful cocktail of drugs I'm prescribed and take daily via my tummy - I have a feeding tube through my abdomen, injection and syringe driver, the way in which we protect me from sensory, physic and intellectual stimulation and the IV infusions have from time to time in hospital. As I think I said in my appeal ME is truly a hideous, ugly, monstrous disease."
Here is an obituary for Emily Collingridge written by activist Matthew Smith that provides some back-story into Emily's experience of ME/CFS and some valuable links to her work:
Lois Owen in Derby, 2001 with her father, Roger
I'm very sorry to hear about the death of this kind-hearted 34-year-old woman who had so much potential to offer. This may seem an incredulous story to those who haven't experienced the ravages of very severe ME/CFS, but I fully understand why she couldn't go to hospital (which I'm guessing is the only place a feeing tube could've been inserted). When you are at this level of functioning, you have absolutely nothing to spare for the clamouring, invasive, demanding nature of hospitals. You can't stand even the trip via ambulance, let alone the treatment you get once you've been admitted. So, you choose the place you know for sure wont kill you - your home. Sadly, even refraining from hospitalization was not enough to save Lois' life. Sincere condolences to her family on the loss of their beautiful daughter.
via Derby Telegraph
Monday, february 27, 2012
"SIX words and she would be exhausted."
That was how Roger Owen explained his daughter's reluctance to be visited by doctors.
"She just couldn't cope with any more information than that," he said. "Even her lunch took four hours to eat because chewing used up energy."
University graduate Lois Owen, 34, died after her weight plummeted to just 3st 2lbs (20kg), leaving her exhausted and barely able to move.
She had battled for years with chronic fatigue syndrome and medics said she also had anorexia.
Neither Mr Owen or his wife could face sitting through the inquest held into her death. Mr Owen attended only to give evidence.
He told the hearing that those involved in Lois's care were "powerless" as everything they tried – from home visits to admitting her to hospital – made her condition worse.
Even Lois's GP said the best course of action was to allow her to remain bed-bound, at home with a team of carers.
Chronic fatigue syndrome is a disorder that affects one in 250,000 people in the UK and results in extreme tiredness. The cause is not known and there is no cure, although most people improve or recover over time.
But when Lois got a chest infection in March 2009, she was too weak to fight it off and she died.
At her inquest, held at Derby Coroner's Court, deputy coroner Louise Pinder ruled nothing could have been done differently to save Lois's life.
A post mortem examination showed she weighed 3st 2lbs when she died and her organs had shrunk due to "poor" nourishment.
Mr Owen said Lois's loss of appetite was caused by a lack of energy, but medics said she had anorexia.
And consultant pathologist Dr David Semeraro said cachexia, meaning a weakened body, had left Lois unable to fight a chest infection that led to her lungs failing.
Medics told the inquest they felt "powerless" as Lois, of Crosby Street, Derby, refused to be seen on a regular basis and wanted to be alone when she ate or drank.
GP Dr Ruth Lenehan said admitting her to hospital was "not in her best interests" as her physical condition "deteriorated" when she was taken from her bed.
Lois's health problems began when she was diagnosed with epilepsy at the age of 12 or 13, although medication meant it rarely impacted on her life. A year later, she was diagnosed with chronic fatigue syndrome.
Mr Owen told the inquest the condition was identified after his daughter came home from school feeling tired.
He said: "She was complaining of leg aches after walking two miles uphill to school. We didn't take too much notice at first but then it was getting worse.
"She was going to bed before 10pm. It meant her social life was quite limited."
Mr Owen said her daughter's condition "fluctuated" and she had been well enough to enrol at the University of Derby. Fatigue crept back into her life but she managed to complete her course.
She chose to remain in Derby after graduating in 2001 and set up a charity called Therapeutic Arts, which aimed to help people by providing free classes in painting, drama, poetry, sculpture and music.
But, a year after setting up the business, she suffered a relapse of her chronic fatigue syndrome and was largely bed-bound until 2004.
Dr Lenehan told the inquest Lois was sectioned under the Mental Health Act in July of that same year after "throwing" herself out of a window, leaving her badly injured with fractures.
Mr Owen said his daughter told him she had begun "hearing voices" and that she later blamed it on dehydration.
With anti-psychotic medication, consultant psychiatrist Dr Subodh Dave told the hearing that she "progressed well", put on weight and was discharged from hospital as an outpatient in October 2005, allowing her to return to work. She was discharged from Derbyshire Mental Health Trust completely in March 2006.
But another chronic fatigue relapse towards the end of 2006 led to her again being bed-bound. She never recovered.
Mr Owen said he and his wife, who live in Bradford, did not believe their daughter was ever clinically anorexic.
He said: "We took her out in 2005 for a meal, near Christmas, and she surprised us by deciding to have a steak. She enjoyed her food.
"We feel she never had a problem with food except for when she was unwell. When she didn't want to eat she said it was because she didn't have the energy."
Mr Owen said Lois believed she would get better.
He said: "She could not communicate orally for the last two-and-a-half years of her life. But she left bits of writing and in them she wrote her plans for her business and a list of five books she wanted to write.
"By her bedside there was a five-year plan, starting in 2009, of things she hoped to achieve. They were to do with her home, her business and her writing."
Dr Lenehan said she never saw Lois out of bed because she was too "frail and thin".
She said Lois did not allow her to visit frequently.
Asked about the last time she saw Lois – four days before her death – she said: "She appeared thinner than when I had seen her previously. I was able to communicate with her via hand gestures and writing. We discussed admitting her to hospital but she felt that would make her condition worse."
Dr Lenehan said she and Lois's team of carers had done all they could to help her.
Christopher Ward, professor of rehabilitation medicine at the University of Nottingham, agreed with Dr Lenehan, adding "there was a sense of powerlessness" among her carers.
A team from Derbyshire Care Services visited three times a day to prepare food and clean. Care co-ordinator Charlotte Wilson said a care plan – agreed by Ms Owen and her family – was followed.
Deputy coroner Louise Pinder recorded a narrative verdict.
She said Lois had received "appropriate care" in the circumstances and ruled she had not been neglected, accepting Ms Owen "remained in control of, and was responsible for, all decisions relating to her care".
Lois wrote book about condition to help others
Lois Owen's love of writing and helping others is what led her to pen a book on tackling chronic fatigue syndrome.
Now her father, Roger Owen, has had it published in his daughter's memory – and says that a chronic fatigue charity has expressed an interest in selling the book.
Lois wrote chapters in her stronger years, Mr Owen said.
The book, Bed Without Boundaries, details her own battle with the syndrome and suggests therapeutic activities to help other sufferers.
Mr Owen said: "She finished it in 2003 and it's based on her experiences of chronic fatigue syndrome up to that point, such as being bed-bound as a teenager and her relapses.
"After she was better for a while, in 2004, she managed to update it. It was her dream to have a book published. When she died, I edited and illustrated it."
Mr Owen said Lois had started writing four other books but never finished them due to poor health.
He said she was a talented writer and that he and his wife had kept 100 of her poems. "It's one way of remembering Lois," he said.
The former University of Derby student was among only a few people on her combined psychology, healing arts and drama course that graduated with a first-class degree in 2001.
From then, she and a friend set up a charity. It offered free sessions in painting, drama, poetry, sculpture and music.
Its aims were to help users express themselves and improve their learning. It folded in 2007 because Lois was too unwell to help run it.
Mr Owen said helping others mattered dearly to Lois.
He said: "Her friends told me of a time when they got off a train and looked back to see her talking to a homeless person sat on the floor. Everyone else had walked by. She had a heart for the underprivileged. It's ironic she tried to help people but that no-one, in the end, could help her."
In honour of all the people who have died while living with (and often directly because of) ME/CFS http://www.ncf-net.org/memorial.htm
Sophia Mirza, 1973-2005; UK
ME/CFS has been cited as the 'cause of death' on death certificates issued in the US and Australia. There are likely more deaths due to ME/CFS than are reported, as 'heart failure' may be cited (for example), without citing the cause of the heart failure as ME/CFS. This article is about the first such death in the UK. There is tons of information available on Sophia Mirza's case including copies of medical reports, the death certificate and more because her mother, Criona has meticulously recorded and commented on her daughters' history in hopes of holding those authorities that contributed to her death accountable. Criona Wilson has set up her own very comprehensive website at: www.sophiaandme.org.uk
The following article helps explain how ME/CFS is biological in nature. Unfortunately, Sophia Mirza had to lose her life to help convince those who believe otherwise. To keep within copyright regulations, I have reprinted about 200 words of the original article. Please use the link at the bottom to view it in it's entirety. Sophia's mother has posted video on YouTube, so you can see what a brave young woman she was. Braver than those that relegated her to a psychiatric wasteland that helped contribute to her demise.
There is also an excellent piece written by Sophia's mother at the investinme.org site, detailing the way both she and Sophia were blamed for Sophia's ME/CFS by authorities that did nothing but let them down time and again. After reading through Sophia's medial records, I see a huge, but common problem emerge: authorities being so set on doing their job, even if it's to the detriment of those they are supposed to be assisting. It's one of the worst cases of ME/CFS negligence I've ever come across; I highly recommend reading it.
First official UK death from chronic fatigue syndrome
16 June 2006 by Rowan Hooper
Coroner Veronica Hamilton-Deeley of Brighton and Hove Coroners Court, UK, recorded the cause of death of a 32-year-old woman as acute aneuric renal failure (failure to produce urine) due to dehydration as a result of CFS. The deceased woman, Sophia Mirza, had suffered from CFS for six years.
Dominic O'Donovan, a neuropathologist at Oldchurch Hospital in Romford, UK, who gave evidence at the inquest, said that Sophia's spinal cord showed inflammation caused by dorsal root ganglionitis - a clear physical manifestation of the disease.
"Sophia's case sheds light on CFS because there were changes in her dorsal ganglia - the gatekeepers to sensation in the brain - and we know that fatigue depends on sensory perception," he says. "What we need to understand is what happens that makes fatigue more persistent, without there being an obvious systemic disturbance."
The verdict was welcomed by Sophia's mother, Criona Wilson, who had to fight for recognition that her daughter was physically - rather than mentally - ill. Sophia was sectioned for two weeks under the Mental Health Act in 2003.
People die from ME/CFS, but not from states of chronic “fatigue” or “CFS/ME” as defined by the Wessely School.
On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28-30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.
In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is “a greater death rate than normals in the same age range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644).
This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615-626).
Perhaps the most tragic and well-known death from ME/CFS is that of Alison Hunter from Australia, who died in 1996 and whose death certificate stated the cause of death as “Severe progressive ME”. She was just 19 years old. The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel. James Ibister, Head of Haematology at Royal North Shore Hospital, Sydney, said: “To be honest, I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me”. Alison, he said, suffered “terrible physical distress compounded by insults and inhumanity” (www.ahmf.org).
In 1998, an ME/CFS sufferer wrote: “I’ve had ME for nearly five years, 18 months of which were a living hell. The physical suffering (inability to walk unaided, chew, swallow, breathe properly, hold my head up, hands which became spastic) was bad enough, but the brain symptoms were at times unbearable – my brain exploding with stimulus until I thought I’d gone mad (and) the room spun like I was drunk, making me feel physically sick. The bed felt like it was moving. I had explosions of light before my eyes. Worst of all were the ‘seizures’, which felt like I was having a stroke – pins and needles on my head and face, drooping muscles around my mouth, my head would start to tip backwards, absolutely terrifying. I live alone, yet have been refused home care, disability living allowance or any form of medical advice. The public need to be shocked by seeing the severely affected, those being tube fed, shaking, uncontrollable, paralysis, unable to hold up their head, speak, see, control bowel movements. The myth that ME is never fatal must be dismissed. I know of several people who have died of the complications ME can bring” (Perspectives, September 1998:26).
UK Coroners are now providing incontrovertible evidence that ME/CFS can lead to death. This is something that the ME/CFS community has known for many years. The UK authorities keep no statistics, so the actual number of deaths from ME/CFS remains unknown.
In 1992, a 30 year old woman in the UK who had suffered from ME/CFS for five years committed suicide; the post-mortem study (using polymerase chain reaction) showed enteroviral sequences in samples from her muscle, heart, the hypothalamus and the brain stem. No enteroviral sequences were detected in any of the control tissues. The researchers stated: “The findings further support the possibility that hypothalamic dysfunction exists in the pathogenesis of (ME)CFS (and) they suggest that the chronic fatigue syndrome may be mediated by enterovirus infection and that persistent symptoms may reflect persistence in affected organs” (McGarry et al. Ann Intern Med: 1994:120:11: 972-3).
On 18th June 1995, Consultant Radiologist Dr Eric Booth died from ME/CFS aged 48 years, having had ME/CFS for 16 years. Four years before he died, Booth wrote: “I have been very seriously ill for the last five years, being totally bedridden (but) am unable to convey this to my medical colleagues. I have come to believe that physicians suffer from compassion fatigue” (BMJ 28 October 1995:311). The autopsy findings were disturbing but were suppressed; Booth’s next of kin was warned by the Official Solicitor that action would be taken against her if she divulged the post-mortem findings, to the extent that she was reduced to a state of chronic fear.
In 1998, there was the well-reported case of Joanna Butler, a young woman aged 24 from Leamington Spa, Warwickshire, who was severely affected by and died from ME/CFS. She was nursed at home by her parents and was bed-bound for the last two years of her life and required tube-feeding. Although she died of ME/CFS, her parents were suspected of having caused her death by administering too high a dose of a medically-prescribed morphine-related compound, and the local paper (Courier) reported that the Warwickshire County Coroner (Michael Coker) ordered a police investigation. This investigation cleared them of blame but they were hounded to such an extent that they were forced to move away from the area (see the press reports in The Observer, 19th March 1998: “Tragic death of young ME victim” and the reports in the local paper, including the Courier, which carried a report on the ‘many who die each year’ of ME).
In January 2003 the wife of Richard Senior died of ME/CFS; the North Wales Coroner entered CFS as the cause of death on the death certificate.
On 4th July 2005 Casey Fero died of ME/CFS at the age of 23 in the US. The autopsy showed viral infection of the heart muscle. The pathologist was shocked at the state of Casey’s heart, which showed fibrosis indicating the presence of a long-standing infection.
In November 2005 Sophia Mirza died of ME/CFS in the UK and the death certificate of 19th June 2006 gives CFS as the cause of death, with acute renal failure.
Another UK death from ME/CFS occurred in May 2008 when a severely affected and courageous woman died in the North of England; her death certificate gives “Myalgic encephalomyelitis” as the cause of death.
Evidence from autopsies of people who have died from ME/CFS is chilling. In Sophia Mirza’s case (a 32 year old woman sectioned by psychiatrists who alleged that she was suffering from a mental disorder so she was kept in a locked ward and, according to her mother’s evidence, denied basic care), there was evidence of severe inflammation throughout 75% of her spinal cord. This was one of three such autopsies spoken about by Dr Abhijit Chaudhuri at the Royal Society of Medicine meeting on 11th July 2009 (see below).
A 2005 autopsy in the US showed oedema of the lower limbs; the alveolar spaces of the lungs were filled with inflammatory cells and there were small emboli scattered throughout the arteries; there was marked congestion of the liver and spleen; the bowel was ischaemic; there was mild inflammation of the kidneys; there was also evidence of rhabdomyolysis (the breakdown of muscle fibres resulting in the release of muscle fibre contents into the circulation, some of which are toxic to the kidney); the bladder showed a hyperplastic epithelium; the thyroid showed colloid filled follicles, with scattered dystrophic calcifications and calcification of the small arterial walls; the right occipital lobe of the brain showed areas of degeneration and degenerated astrocytes, and the white matter surrounding this defect appeared puckered.
The Medical Director of The National CFIDS Foundation (chronic fatigue immune dysfunction, a commonly-used US term for ME/CFS), Dr Alan Cocchetto, commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients” (http://www.ncf-net.org/forum/Autopsy.htm).
The Wessely School, however, including the three PACE Trial Principal Investigators and the Director of the Clinical Trial Unit, continue to believe that ME/CFS is an “aberrant illness belief” and they assume that all patients – including those with ME/CFS -- suffering from what they deem to be “medically unexplained symptoms” (which they refer to as MUS) or from “medically unexplained physical symptoms” (which they refer to as MUPS) are really suffering from the same mental illness, ie. somatisation, and as such their symptoms will never be medically explained, therefore there is no point in wasting health service resources in seeking a biomedical explanation.
The Wessely School claim that they are reacting against Cartesian dualism – the long-held belief in Western medicine that an illness is either “organic” or “psychiatric”. However, as Dr Mary Schweitzer (a US ME/CFS sufferer and patient advocate) points out, the Wessely School has simply turned Cartesian dualism on its head. Disorders such as schizophrenia used to be regarded as “mental”, but advances in understanding now show that the psychiatric disturbances that present in schizophrenia are manifestations of underlying organic pathology. In their own interpretation, the Wessely School has reversed this in relation to ME/CFS, claiming that the physical is psychological which hardly accords with 21st century medicine