PART 1 ME Long report on deaths

Discussion in 'Fibromyalgia Main Forum' started by sues1, Jun 25, 2006.

  1. sues1

    sues1 New Member

    ALSO READ PART 2 another posting

    'The Severity of M.E.' section has been updated.

    Some new feature articles have been added, as well as some links to new
    articles on external sites also. New articles and links include:

    1. Cancer and Myalgic Encephalomyelitis

    An Australian mother* explains the difference between how her daughter was

    treated by medical staff when she had cancer and when she later developed

    Myalgic Encephalomyelitis - and the devastating additional burden the

    ignorance and psychological propaganda surrounding M.E. has caused her child
    to have to bear.

    2. The Story of Sophia and M.E. (from the Invest in M.E. website)

    This is the heartbreaking story of Sophia, who through medical maltreatment

    and neglect, died of M.E. in 2005. This story illustrates all too tragically

    that M.E. is a serious neurological illness which is too often dismissed out

    of hand by doctors; sometimes with devastating consequences.

    3. The result of the inquest into the death of Sophia Mirza (from the Invest
    in M.E. website)

    This inquest shows very clearly that the name

    Myalgic Encephalomyelitis IS
    correct (as opposed to 'CFS' or Myalgic 'Encephalopathy') because there is

    clear evidence of inflammation of the spinal cord as well as that

    Encephalomyelitis is a debilitating neurological illness which can sometimes

    be fatal, as it was for Sophia.

    'Today, 13th June 2005, the inquest into the death of Sophia Mirza was held

    in Brighton Coroners Court, England. The cause of death was stated as

    renal failure as a result of CFS' The pathologist also said -

    'ME describes
    inflammation of the spinal chord and muscles.

    My work supports the
    inflammation theory. There was inflammation in the basal root ganglia.'

    4. Inquest Implications by Eileen Marshall and Margaret Williams, 16 June

    There can be few people in the UK ME community who have not by now heard the

    results of the inquest into the tragic death from ME/CFS of 32 year-old

    Sophia Mirza, the beloved daughter of Criona Wilson from Brighton. Although

    severely sick with medically diagnosed ME/CFS, Sophia was abused by the

    doctors charged with her care by being wrongly sectioned under the Mental
    Health Act. '

    [This is just one piece of evidence, of many (see more below), which shows

    that Sophia Mirza's was NOT the first death from M.E. as many ignorant media

    are now claiming.

    Unfortunately this is nowhere near the 'first'
    M.E. death. See also: ]

    5. Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006
    [On the inquest into the death or Sophia Mirza.]

    The law which states that a person can only be sectioned if he is a danger
    to himself and/or others,

    has been swept aside by the above mentioned
    self-serving monsters masquerading as doctors.

    Many will dismiss this as fanciful rubbish.

    After all, we live in civilized
    societies where such things could never happen.

    Unfortunately, they can and
    they do. It happened to the recently deceased Sophia Mirza.'

    6. Suzy's story (on Invest in M.E.)

    'Less than a year on from the start of this bad deterioration, the illness
    turned into a nightmare of the worst kind.'

    7. A Personal Story-Sheila Barry (on Invest in M.E.)

    'I believe that the actions of the psychiatric lobby to have ME classified
    as a psychiatric illness

    and to prevent research into the cause, and a
    diagnostic test were the major reason that my daughter [a ME sufferer,]

    chose to end her life.'

    8. Shannon's Story (on Invest in ME)

    'I'm 24 years old, with skin milk-white from staying indoors. I've been

    house bound and mostly bedridden for six years.

    Even my dad doesn't believe me at times that I'm really sick.

    Or he
    latches on to some far-fetched explanation of things, or wacky new

    If a doctor tells him it's psychological, he's believed the
    doctor over me. I hate that. Always I have to defend myself.'

    9. Issues related to severe ME and the involvement of the UK Psychiatric
    lobby By Greg Crowhurst, September 3rd 2005

    'There are an estimated 62,500 people with severe ME /CFS in the UK

    "seriously inadequate health care" according to the Chief Medical
    Officer (DH 2002) [3].

    Quality of life tests indicate that people with

    severe ME/CFS feel similar to patients with AIDS two months before death in
    their ability to do things.

    The terms 'fatigue' and 'chronic fatigue' were not associated with this

    illness at all until the name was changed from ME to Chronic Fatigue

    Syndrome (CFS) in 1988 in the US [6]'

    10. A survey of those most severely affected by ME/CFS (by the 25% ME Group)

    The 25% M.E. Group sent out a questionnaire to its members to help it

    prepare a submission for an inquiry into M.E. The whole submission is over

    50 pages long (it also includes information from previous surveys they have

    11. From Pat Fero on her son Casey

    It has been 12 weeks since my son Casey died.

    Notes and e mails continue to
    arrive at my home and at the office of the WI CFS ASSN.

    The support from
    many diverse people and groups has helped me and my family work through
    these difficult times.

    The University of Wisconsin forensic pathologist found that our son Casey
    died of myocarditis,
    that is, he had heart damage, inflammation and the
    tissue was full of viral infection.

    Casey also had old fibrosis, indicating
    that the viral infection was not of a new onset.

    The pathologist was
    "shocked" at this finding. I am not shocked considering Casey's long
    standing CFS and the research in this area.
    See more of this report in a second posting.........Susan

    SEE PART 2 POSTINGS ALSO for more[This Message was Edited on 06/25/2006]
  2. sues1

    sues1 New Member

  3. caroleye

    caroleye New Member

    Great post; everyone needs to read!

    Thanks & LIGHT*************carole

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