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Death in Derby due to 'chronic fatigue syndrome and anorexia'

Discussion in 'General ME/CFS News' started by Firestormm, Feb 27, 2012.

  1. Firestormm

    Firestormm

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    Derby Telegraph on-line: 27 February 2012: http://www.thisisderbyshire.co.uk/L...t-fight-life/story-15332610-detail/story.html

    Lois weighed just 3st when she lost her fight for life

    A UNIVERSITY of Derby graduate died after her weight plummeted to just 3st 2lbs due to chronic fatigue syndrome and anorexia.

    Lois Owen, 34, secured a first-class degree before becoming bed-bound and too weak to walk or even speak.

    Her condition meant she was unable to fight a chest infection and she died.

    An inquest into her death heard she declined help because medical appointments left her feeling exhausted. Even noise and sunlight "drained her" and carers had to move around her quietly.

    Her food had to be liquidised, as chewing used up her energy. Sometimes, it took her four hours to eat lunch and digesting just one spoonful of solid food a day such as mashed banana was a "positive" step, the inquest heard.

    She slipped into unconsciousness after having possibly not eaten for four weeks and died two days later.

    A post-mortem examination found her organs had shrunk due to her being "poorly nourished" and that, ultimately, she died from both lungs becoming inflamed.

    Consultant Pathologist Dr David Semeraro said cachexia a wasting condition that can be caused by anorexia and chronic fatigue contributed to her death.

    Dad Roger Owen said she had a "kind and loving heart".
     
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  2. Firestormm

    Firestormm

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    Full story: http://www.thisisderbyshire.co.uk/T...ndrome-tired/story-15332461-detail/story.html

    Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat


    "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."
     
  3. Enid

    Enid Senior Member

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    I'd put it (to correct) ME/CFS followed by anorexia - I well remember all of the symptoms and stones in weight for no reason falling off - later difficulties in swallowing anything at all. A very sad story firestormm. Just hope the medical etablishment (epecially behaviourists) wake up here. Their ignorance (and lack of any interest or concern) at least is offset by the volume of research findings we rely on from overseas. What is the matter with medicine in the UK that psychiatric treatment is seen as best intervention when illness(s) are simply not understood. Devastating. Disasterous treatment and lack of all round.
     
  4. Calathea

    Calathea Senior Member

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    She went down to 3st2 (that's 44lb/20kg) and no one tried feeding her through a tube? How on earth does this not involve serious neglect? Any doctor monitoring a real anorexic woudl have hospitalised them long before that point. When you're that weak with ME, there's a good chance your cognitive issues are too severe for you to think your way through a problem as well. The parents don't seem to be aware of the inconsistency of their story: if she really was choosing not to eat deliberately, then yes, that's anorexia. If you want to live, you have to accept that you have to get nourishment down you somehow.

    I am deeply disturbed that this woman was allowed to starve to death due to ME and no one seems to have lifted a finger to stop it. To be honest, with every ME death that I've heard of that's reached the press, the story given by the family sounds odd.
     
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  5. maryb

    maryb iherb code TAK122

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    Too sad for words and - everything was done that could be done - I don't think so. Perhaps lookiing for infections may have been a start.....The medical profession beggar belief, they have a one track mind, on-one thinks outside the box, they are supposed to be the brightest people - really???? Just too easy to put anorexia on the death certificate.
    I lost 2 and 1/2st in 6 weeks when I had a viral re-activation, me who could eat a horse under the table before I got ME.
    I was admitted to NHS hospital 3 times and not once was I tested for viruses, diagnoses varied but they settled on migraine - nurses said to me privately they thought it was a virus, eating toast took so much energy I remember just sucking it. I immediately went down to Breakspear and blood tests showed I had active CMV infection.
    When dealing with ME doctors should realise the importance of infections/ herpes viruses in particular, the are held under control by the majority of the pop but for some of us they are constantly re-activating, they don't learn this in medical school - its time they got with it. But will they? they are in the USA slowly but in the UK - not a chance.
    For the sake of some testing perhaps Lois could have been helped, we'll never know because it wasn't done.
    A bright young life lost, she sounded a beautiful person too. Her family must be devastated.
     
  6. Firestormm

    Firestormm

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    I am still rather stunned by this news. Wasn't aware of the death previously (or sadly cannot recall). You can post comments beneath the article in the Derby Telegraph if you are able. Sad, shocked and angry all at the same time. Will take me a while to process all of this I think. Still I did try and express my feelings in a comment.
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    "False death belief"

    You can't die from ME, ME is just a mental condition!

    /furious, vitriolic, outraged sarcasm mode off

     
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  8. Boule de feu

    Boule de feu Senior Member

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    My feelings exactly. Too sad.

    I was already very touched by Christy Gaffey's death and now this.
    This is what made me sob. It is the straw that broke the camel's back. I feel pretty vulnerable right now since I just relapsed. I can understand why Lois would refuse to go to the hospital to get the proper care. I did not go to the ER last week because I was too sick. I decided to see my GP less often for the same reasons. And who in their right mind would accept to be treated as a psychiatric patient when we all know (too well!) that it is a physical illness???

    Just telling a patient that they have to change their set of mind won't change anything. It won't make us feel better.

    I have a friend who decided to get euthanized so she would have to go through what Lois had to go through (it is legal in Belgium). Sometimes it feels that it is the only way out, especially when the pain is unbearable. Lois allowed herself "to let go".
     
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  9. Boule de feu

    Boule de feu Senior Member

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    And why would it be wrong to write that she died from anorexia due to unmanageable ME symptoms?
     
  10. Nielk

    Nielk

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    This is so sad that I'm laying here crying. Not that it takes much the last few days for me to cry. I have managed to pretty much do that all by myself but this story is so despicable! Yes it's terrible neglect!!! No matter if the anorexia was a result of ME or it just was a coincidence that she had both. It was such a senseless death. The fact that we are afraid of doctors is due to a gross negligence of the medical field all over the world. The major cause of course is the immense push to make us out to be psychiatric patients, which is ridiculous. But, even the ones who feel we are psychiatric patients how do they wrap this around their brains?We still all have human rights. Is it okay to neglect one to the point of allowing them to starve themselves for 4 weeks and die?
     
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  11. Desdinova

    Desdinova Senior Member

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    Nice to see they labeled her with anorexia, really really Nice. Let me guess she had a fear avoidance of food and really had plenty of energy. :rolleyes:
     
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  12. Enid

    Enid Senior Member

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    Yes quite Desdinova - shows how limited their vocabulary (and knowledge) is. Can't find a place in their little "boxes" yet. Far too complicated for them ME.
     
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  13. Firestormm

    Firestormm

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    The pathologist actually said Cachexia and Chronic Fatigue [Syndrome]:

    My source being wikipedia (sorry) but:

    Cachexia (play /k??k?ksi?/; from Greek ????? kakos "bad" and ???? hexis "condition")[1] or wasting syndrome is loss of weight, muscle atrophy, fatigue, weakness, and significant loss of appetite in someone who is not actively trying to lose weight. The formal definition of cachexia is the loss of body mass that cannot be reversed nutritionally: Even if the affected patient eats more calories, lean body mass will be lost, indicating there is a fundamental pathology in place.

    Cachexia is seen in patients with cancer, AIDS,[2] chronic obstructive lung disease, Multiple Sclerosis, congestive heart failure, tuberculosis, familial amyloid polyneuropathy, mercury poisoning (acrodynia) and hormonal deficiency.

    It is a positive risk factor for death, meaning that if the patient has cachexia, the chance of death from the underlying condition is increased dramatically. It can be a sign of various underlying disorders; when a patient presents with cachexia, a doctor will generally consider the possibility of cancer, metabolic acidosis (from decreased protein synthesis and increased protein catabolism), certain infectious diseases (e.g., tuberculosis, AIDS), chronic pancreatitis, and some autoimmune disorders, or addiction to amphetamines. Cachexia physically weakens patients to a state of immobility stemming from loss of appetite, asthenia, and anemia, and response to standard treatment is usually poor.[3][4]
     
  14. Calathea

    Calathea Senior Member

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    The woman hadn't eaten in a month. That doesn't sound like failure to retain weight despite eating enough calories, that sounds like starvation. We have medical means to help people who are unable to eat, and they were not used. The patient was too ill to speak, and with that level of ME there's a strong chance that she may not have been able to think coherently, let alone to communicate her wishes. Something is very badly wrong here, and there should be an investigation.
     
  15. Boule de feu

    Boule de feu Senior Member

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    Not too long ago, my mom died from liver cancer and had cachexia. She starved to death (3 weeks).
    It is a horrible experience to witness. I feel very sorry for her poor parents who could not do anything for her.
     
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  16. Enid

    Enid Senior Member

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    If there was a "fundamental pathology in place" - why was it not investigated and diagnosed much sooner - there are enough possibilities on Wikipedia. I wonder if the Docs considered. I recall a long period of being too tired to eat (apart from GI problems - the whole functioning of the digestive tract). Drip feeding was required for some patients in Norway for some time I was told by friends in their ME Association. They just could not eat.
     
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  17. Firestormm

    Firestormm

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    I am really sorry to hear that Boule. That must have been horrible to witness let alone experience. I am sorry if I triggered a memory x
     
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  18. Boule de feu

    Boule de feu Senior Member

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    No need to worry about that, Firestormm. You did not triger an old memory. The memory will stay forever in my mind. Once you have experienced what cachexia is, you can't forget it. It is a very scary thing to witness.
     
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  19. Firestormm

    Firestormm

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    It's frightening. This whole day I have been simply stunned and in a daze really (of the not usual variety). Knocks the stuffing out of me when this kind of thing happens. Although this one especially because of the cachexia and what the family went through as well of course as Lois. RIP sweetheart.
     
  20. Desdinova

    Desdinova Senior Member

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    Well that's a whole heck of a lot better than Anorexia, and miles away from any mind body mumbo jumbo.

    Still I have to agree with Calathea's statements on the matter.
     

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