Mother arrested for mercy killing of daughter with M.E.

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Dec 7, 2008.

  1. Bluebottle

    Bluebottle New Member

    Mother arrested as 'yuppie-flu' daughter is found dead after 16 years in bed

    This is an absolute tragedy, and how insensitive of the newspaper to call M.E. 'yuppie flu'.

    The members of the psychiatric profession who have taken all the UK funding for M.E. over the last two decades, whilst insisting that M.E. is an 'abnormal illness belief', should bear responsibility for this young woman's wasted life and death.
    [This Message was Edited on 12/08/2008]
  2. ladybugmandy

    ladybugmandy Member

    i wish some lawyer would take the case and sue the UK government for not taking CFS seriously. they only listen when they lose money. I HATE this.
  3. findmind

    findmind New Member

    Where did you hear those words? The other posts I've read did not mention that!

  4. TeaBisqit

    TeaBisqit Member

    And we lose yet another one as the medical community and governments around the world continue to ignore the severity and seriousness of this disease. It's horrible. When will we get justice and the help we need?
  5. victoria

    victoria New Member

    FindMind, it's in the first paragraph:
    "A mother who nursed her daughter for 17 years with the disease ME has been arrested on suspicion of her murder following what is believed to have been a 'mercy killing'."

    What I find amazing is that they degraded her medical condition, calling it 'yuppie flue' as if it was nothing serious (typically what that term means!) when this is what happened to her:

    "...She had a tuberculosis immunisation in November 1991 and immediately felt unwell. She was diagnosed with ME in May 1992 and was left bedridden by her severe condition. She had been unable to speak since August that year. Her family said: 'Prior to her illness, which left her paralysed, unable to speak, eat or drink and until recently, no memory, she was an active healthy teenager full of life's dreams."

    That's unbelievable! This is an unspeakable and outrageous tragedy. Wonder if there's anywhere anyone can write to help show support for the mother at least, it might give her (and her family) some comfort.

  6. findmind

    findmind New Member

    thank you; I did not read the newspaper articles (I have webtv and cannot "click" on many things).

    That poor mother.

    I think we'll hear where we can send messages of comfort and maybe even money to help in her defense...

    Tansy will know I'm sure.

  7. tansy

    tansy New Member

    and at this early stage in the police investigation it was foolhardy of them to do so.

    This is a tragedy; young people are often more severely affected and this is sadly reflected in the numbers who die.

    There is a large and active regional support group but the spokesperson for them has refused to accept the abuse and neglect genuine ME cases face within his area; he prefers to work with Peter White (member of the Wessely School). Sophia Mirza also lived in the same area; they failed her too. These tragic deaths highlight the need for clearer definitions and accurate information for doctors.

    The myths about ME have already cost too many lives.

    tc, Tansy
    [This Message was Edited on 12/09/2008]
  8. tansy

    tansy New Member

    Hi findmind

    As far as I know nothing has been set up yet. However, John Greensmith has a website where we can submit anything pertaining to ME, so that's a good option atm.

    The 25% ME group is another option; their contact details can be found at

    When I learn more I will pass it on.

    tc, Tansy
    [This Message was Edited on 12/09/2008]
  9. findmind

    findmind New Member

    Will look into this, but unless the money is designated to go to this poor mother, I'd be hesitant to send it anywhere.

    Maybe soon someone, some .org will come forward and let us know.

    Hope you are case you UKers don't know what that means: as well as can be expected, LOL!

  10. tansy

    tansy New Member

    are needed rather than funding for legal representation since the police are waiting for further post mortem results.

    A journalist met Lynn and her mother a few years ago and has written this article

    Yes I am AWACBE; I seem to be spending most of my time trying to play catch up and balancing that with not overdoing it. I was trying to deal with too many things but a few just kinda sorted themselves out so my list of things to do has become a tiny bit shorter.

    Hope you are also AWACBE.

    tc, Tansy
  11. findmind

    findmind New Member

    Know just what you mean. I have one brother coming in from 1600 miles away tomorrow; the next day, a very sick brother arrives at noon. I hae to drive them 150 to a small town where the sick bro. had to leave his RV several months ago. Stay the night, then drive back the next day.

    I'm trying to get on an earlier schedule, and it is soooo hard! And, I must have 3 meals a day to take my meds, and they only eat twice, so this should be a challenge. If I miss my Mestinon, bad things happen, especially if active for more than 3 hours, which I will be for two whole days. That's not even the getting ready for the trip, either.

    So, off to bed I go...
    Take good care of you...
    oh, we had sleet, ice and a dab of snow in south Texas last night...what fun it is to see snow down here! The kids (well, and lots of adults, too) just go nuts over it.

    Will get back at ya when I get home...
    Take it easy and be well...


  12. Bluebottle

    Bluebottle New Member

    The Times Letters page print edition and online

    11 December 2008

    ME patient mourned

    More needs to be understood about the sufferings of patients with ME

    Sir, Lynn Gilderdale was a valued member of the 25% ME Group and we are all heartbroken by her death (report, Dec 9), especially as we are fully aware of her mother’s total devotion to her.

    We represent ME sufferers who are totally bedridden, some of whom are tube fed and dependent on carers, and others who are lucky enough to be able to leave home in a wheelchair occasionally; two other members of our group have recently died with ME on their death certificates.

    Despite thousands of medical research papers showing immunological, neurological, endocrine, cardiac and gene expression involvement in ME, it is thought of as an illness of fatigue and even called chronic fatigue syndrome by the media and some doctors.

    Our members in reality have to deal every day with truly debilitating, frightening and overwhelming symptoms, and they also have to cope with the loss of anything resembling normal life.

    Lack of knowledge from the medical profession, and lack of understanding from a society which has been told for years that ME is merely fatigue, can make this awful situation truly intolerable. Lynn’s mother made the point that ME is greatly misunderstood and that Lynn suffered from the stigma as well as bravely fighting such severe illness.

    ME sufferers need to have their suffering recognised, and biomedical research funded, if more deaths are to be avoided.

    Hayley Klinger

    25% ME Group

    Troon, Ayrshire
  13. gapsych

    gapsych New Member

  14. doxygirl

    doxygirl New Member

    aren't the doctor(s) and anyone else who she has seen for her illness be arrested as well......

    because if they did NOTHING to help her then they contributed to her death!

    Also could someone elaborate as to why they think the mother killed her and not the disease itself?

    when will this ignorance stop?

  15. tansy

    tansy New Member

    Hi Kina

    Lynn was a member of the 25% ME group so you could send a message via them. Their contact details can be found at

    At this stage no one should be drawing any conclusions; Lynn was very severely affected and from what I have learned her mother is unlikely to have murdered her because she was a burden. Police investigations are ongoing and it'll be some time before we know how they will proceed.

    The ME Assocation wants to raise money to fund a tissue bank in the UK so more can be learned about ME. In Sophia's case permission to carry out a meaningful autopsy was granted but it rarely happens here or in the US. In the past autopsies proved invaluable to researchers. Dr Kerr commented that he was not surprised at the findings including the inflammation related to a herpes infection many years after she first became ill.

    If there is an upside to this it's that media coverage has highlighted how severe ME can be; so often it's portrayed a chronic fatigue or merely psychosomatic.

    tc, Tansy

  16. tansy

    tansy New Member

    Hi Doxy

    After Sophia Mirza's death several doctors were reported to the General Medical Council who decided there was no case to answer!

    The sad irony is that Lynn and Sophia lived in the same area and had been made worse when treated on a psychiatric ward. Yet the severity of their conditions, then becoming even worse following the wrong kind of medical interventions, was not accepted as genuine.

    Doxy one of the reasons I have posted warning about drawing conclusions at such an early stage is that the severity of her illness may have been a bigger factor than is being reported. Lynn might have been able to tolerate morphine better than I but in my case over time the side effects built up and I had to cease using it even though it helped with my post operative pain. Many of us have problems metabolising meds; my GP had finally got that recently so after many years he is making more informed suggestions.

    tc, Tansy
  17. tansy

    tansy New Member

    This is an extract from evidence being presented at the Judicial Review

    *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).**
  18. tansy

    tansy New Member

    for patients with ME, CFS, GWS, lyme disease etc; vested interests have had too much say in how these illnesses are defined. I do wish everyone in the US would recognise the CDC has been edging in the same direction so what's happening in some European countries could become more prevalent in the US.

    Hope you are all doing well.

    tc Tansy
  19. tansy

    tansy New Member

    I understand Lynn Gilderdale, a 31-year-old woman who was seriously
    ill with ME for 17 years, who died last Thursday in Britain, as if I
    knew her.

    I understand her mother (54), arrested on suspicion of murder, who
    has been interviewed and bailed to return on March 6, in the same

    Gilderdale fell ill after receiving a BCG vaccination for TB when
    she was 14, before being diagnosed with ME in May 1992. For much of
    her life, she was unable to leave her bed, communicating with her
    family through sign language.

    In February 1992, I received vaccinations to travel.

    By May 1992, the month and year Lynn got her diagnosis, I was in
    Cambodia and had a virus not unlike malaria. The field hospital
    where I was tested could not be conclusive.

    There are photographs of me, all over the world, in summer
    temperatures from 24C to 40 C -- wearing jumpers. I felt cold, ran
    fevers: most of them were low grade, but sometimes the crawling
    spiders and bogeymen of childhood came calling.

    When I got back to Ireland, I spent a year in and out of tropical
    disease units, cameras down the throat and up the bum. No one could
    tell me why I was so tired. They -- and I -- suspected it was my
    high stress levels.

    I gradually recovered and went back to being a fit person with a 14-
    hour day and a social life. Except I habitually cancelled things,
    because I was not "feeling well".

    At Christmas 1997, I decided to go for three-week trip to Peru and
    not to have vaccinations. At the last minute I went to a clinic on
    the strong advice of a colleague, whose husband was from Lima, to
    get a typhoid injection.

    In January 1998, I got bad flu, struggled back to work, resigned
    after a few weeks and went to bed.

    I got out of bed in February 1999, after a year in which I had lived
    with a mystery, learning to contain its symptoms with ruthless rest,
    monastic dietary regime, supplements.


    A clinical diagnosis of Chronic Fatigue Syndrome from an asthma
    specialist Prof Austin Darragh followed.

    I remember sitting in front of him, weeping, asking him if he
    thought my symptoms were manufactured.

    "I wouldn't waste my time if they were," was his answer. He told me
    about Gulf War Syndrome, the effects of vaccination on already
    stressed immune systems.

    I went into the toilet and vomited. I had done this to myself. It
    was a real illness, with no specific cure or end.

    Some members of my family, friends, associates thought it was all in
    my head. There were days when I did.

    I tried to cut the grass, to resuscitate my road running. After
    these separate exertions, I spent weeks immobile, in pain, unable to
    move. I watched a heron outside my window, still, waiting to feed
    itself. I learned the strongest and best lesson of my life: waiting
    is an action.

    I am a high energy person, with a positive outlook. My
    physiotherapist, who treats me weekly for muscular and skeletal
    problems directly related to the condition, says that's a classic
    profile of those likely to get it.

    As the police statement said yesterday, it's a misunderstood
    illness. There are no yuppies any more. There is no flu for an ME

    There were days when I thought about killing myself.

    Today, I've been in tears, reading a story that touches my own past
    and present. Being bedridden at a young age, not having the energy
    to walk in the views you can see only when you can bear to keep the
    curtains open, is a living death, .

    There are 10,000 people in Ireland today who know that feeling, and
    250,000 in Britain, to some degree if not entirely.


    Every summer I have a resurgence of symptoms, a severe allergic
    reaction to pollen. My face swells, my lungs constrict and I watch
    the garden I cannot be outside in. I am a prisoner. My body fights
    itself, reacting even to the good in it as if it were a disease.

    I count blessings then, and wait for the energy you take for

    Lynn was a prisoner 12 months of the year. A prisoner with a
    positive attitude who possibly had enough.

    - Suzanne Power
  20. Bluebottle

    Bluebottle New Member

    Condolences can be sent via the 25% ME Group (for the severely affected):

    25% ME GROUP




    KA10 6HT

    from This is, please note this bit ""Some of her stories were just wicked, just wicked. There is no other way to describe the way in which she was treated," said Ms Colby.

    Suffering fits at specific times of the day, doctors would deliberately try to disorientate Lynn to suggest she was making it up. They would leave food across the room from her, and would leave her lying on the floor if she fell out of bed to try to force her to move."

    ME campaigners offer condolences to Lynn's family

    "LYNN GILDERDALE, who died on Wednesday last week, and her family, struggled not only with the terrible effects of Myalgic Encephalomyelitis (ME), but also the stigma attached to its sufferers.

    The root cause of the disease is disputed within the medical profession, with one school of thought suggesting the symptoms are entirely brought on mentally by the patient themselves.

    Jane Colby, executive director of The Young ME Sufferers Trust, has written a number of books raising awareness of the severity of ME, and spoke in detail with Kay Gilderdale about the problems Lynn had encountered after she was taken into hospital.

    In Ms Colby's 1996 book – ME the New Plague – Lynn's treatment was described anonymously.

    "Some of her stories were just wicked, just wicked. There is no other way to describe the way in which she was treated," said Ms Colby.

    Suffering fits at specific times of the day, doctors would deliberately try to disorientate Lynn to suggest she was making it up. They would leave food across the room from her, and would leave her lying on the floor if she fell out of bed to try to force her to move.

    Ms Colby, who fell ill with ME herself in 1985, and is still hindered by its effects, is working with doctors in Britain and the United States to try and prove the effects are caused by a virus she believes is similar to Polio.

    "You would not know how bad it was until you have seen somebody in that situation and had cared for somebody with it," she said.

    "You feel as if you have been poisoned, you are in pain constantly, you stink because of the sweat coming off you.

    "It is dreadful. We are all devastated and our thoughts are with the family at this time."

    Kay and Lynn Gilderdale worked not only with Ms Colby in trying to raise awareness of ME but were also members of the Kent and Sussex ME Society.

    Colin Barton, chair of the society, worked on several occasions fundraising with Lynn's father Richard, a former sergeant with Sussex Police.

    "In Lynn we have a very brave young lady. She worked tirelessly for years making the public aware of how severe the illness can be," he said.

    He explained how around 10 per cent of people diagnosed with ME were so badly affected they were left bed-bound.

    "The family have always done all they possibly can to help the cause of ME. The mother was a very caring woman who did all she could for Lynn," said Mr Barton."