PART 2 ME long report on deaths(ALSO SEE # 1 posting)

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

  1. sues1

    sues1 New Member

    12. Testimony about Casey to CFSAC by Mary Schweitzer

    On July 4, 2005, sometime between 2:30 am when his mother kissed him good
    night, and 6:30 am when his father came downstairs, Casey Fero died in his

    His heart simply stopped. Casey Fero was 23...

    13. Ean's Story by Barbara Proctor, Ean's mother

    'On Monday 23rd May, two social workers arrived on our doorstep and took Ean
    away under a "Place of Safety Order".

    We were not even allowed to go with
    Ean in the ambulance. Ean was to be in the joint care of Dr C,
    psychiatrist, and Dr B, a paediatrician, at the local hospital.

    During the whole time Ean was in care, we were allowed to see him for only
    half an hour a day.

    He was alone in a ward, could not move, could not speak,
    and had no way of getting help if he needed it.

    He had been told that he had
    been taken away from us because he was dying.

    Ean had to endure the most
    horrific mental torture.'

    14. Sick, Not Tired by Ciara MacLaverty

    If the medical administrative staff are anything like the students they work

    they will be told little or nothing about Myalgic Encephalomyelitis

    (ME), the illness that has kept me largely bed-bound for the past 15 years.

    I've lost count of the times medical staff have said to me: "I don't really
    know very much about ME. You get tired a lot, don't you?"

    No. I'm 35 and haven't been "tired" in the conventional sense of the word
    since I was a teenager.

    As anyone with severe ME will tell you, it has
    nothing to do with being tired and everything to do with being physically

    15. "No Total Rest" prescription is irrelevant to acute ME From Ciara

    It's been almost 20 years since I was first diagnosed with ME. The

    controversies surrounding causes and management of ME have raged through the

    decades but one fact remains constant: I took a virus in 1987 and I have

    never had a day's full health since then. My health appears to be

    permanently damaged. Ditto hundreds of thousands of sufferers.

    I want to express my concerns over the widely touted dictate that "Total
    and/or Prolonged Rest is counter-productive in ME."

    Even some of the
    moderates, who are firmly in the "ME is a serious physical illness" camp,
    can advocate this position.

    16. Autopsy Findings from a Special PWC/ME ©2005 by Alan Cocchetto

    'As to this PWC/ME's determined cause of death: Seizure disorder,
    rhabdomyolysis, acute renal failure and shock.

    Our patient is a longtime PWC/ME who had been seen by a battery of

    physicians. Like this patient, many have been on various pain medications

    that are quite common for those with this disease. Upon arrival at the

    hospital, they developed multisystem organ failure secondary to severe
    Acute renal failure and subsequent shock led to their

    17. Ten things severe ME sufferers wish ME societies would do: by Ricky

    18. BEFORE THE LIGHT DIES By Gurli Bagnall

    'Like a number of other ME sufferers, I have succumbed to heart failure, a

    complication of ME which I believe is directly related to years of medical
    neglect and abuse.

    My condition is terminal but at this point, I have
    outlived the specialist's expectations by about a year. I am therefore

    conscious of the fact that, contrary to his belief, the "time-table" is not
    set in concrete and I need a contingency plan. '

    19. The Right to Die: The need to support and pass 'Right to Die'
    legislation in Australia

    around the world. Written by an Australian person with severe Myalgic

    2006, (name withheld by request). An excerpt:

    'I know this is a touchy subject, but it's a very important one for people
    with severe ME.

    I believe future generations will look back and be appalled
    at how we allowed such extremes of suffering in severe illness/disability.

    The children of the future will see us as savages, torturing our own kind.'

    PLEASE NOTE: The full text of this piece is very graphic and is a very NON=======
    sugar-coated description of severe M.E. and so may be upsetting to read.********

    Those who would like to read the full text can do so at:


    A note on the upsetting content of some of these articles:

    Some of these articles may be quite hard to read, and quite upsetting, but

    it is so important that the stories of those severely affected by M.E. or

    who have died from M.E. are told finally; in the M.E community as well as to

    the wider public. The only thing worse than having severe M.E. or having a

    family member die from M.E. is to have the whole world - including the M.E.
    community -

    ignore it, or pretend it isn't happening or can't happen.

    Lying to other sufferers (or the public) that ME can never be extremely
    severe or fatal

    as sadly many ME sufferers (and their websites, and several
    big M.E. charities do) completely dishonours and disrespects those who have

    died from the illness, or are severely affected.

    We need to use these deaths, to put them in peoples faces and force them to
    see them and acknowledge them.

    ... to make sure they didn't all die in vain
    and are not forgotten or further ignored as they were in life.

    This needs to
    happen not just for all those who have died but also for the stories

    of all
    those still 'living' with very severe ME, right now. All these stories need
    to be told LOUDLY and REPEATEDLY

    for the benefit of the dead (and their
    families and friends), the severely ill and for all of us who have Myalgic

    So although this type of material may be upsetting to read in the short
    term, I think it will benefit us all in the long run many, many times more.

    That is just my thoughts on it anyway. I hope you'll agree. Lecture over!

    Where links are not given, the links to each article are available on the

    'The Severity of M.E. page' (which also contains many more articles on this
    topic) at:


    A call for your M.E. story!

    For some time now, I've been after as many M.E. sufferers as possible to

    tell their own 'Day in the Life' stories, or to explain their 'M.E. Story'

    to be featured on my website; to let the world know what M.E. really is,
    from the horses mouths as it were.

    I'd like to repeat that call!

    If you would like to have your M.E. story, or your day in the life story
    made public

    and for it to aid public awareness of M.E. I am very happy to
    help you do so.

    Parents of children with M.E. may of course also submit
    their child's story, as told by them.

    Stories from the more severely affected will be given priority as these
    stories are so rarely seen elsewhere,

    but any story which highlights any of
    the harsh realities of M.E. (economic, social, family etc.) is also very

    there are many different ways of being severely affected by M.E.

    Names can be changed on publication if you have a need for anonymity.

    See: for more


    Okay, that's it for this month!

    Over the next few months (fingers crossed) I hope to be able to announce the
    completion of a big new project....!

    (I know I said the same thing last month but I have been unavoidably delayed
    by the usual annoying things.)

    On a related note, for the last 3 months or so I have been physically unable
    to answer all but the very mimumum amount of email (short occasional emails

    to my closest friends only, with few exceptions). This problem looks like
    continuing for some months unfortunately,

    but I do hope to get to it all
    eventually (over the next 3 or 4 months hopefully).

    So please know it REALLY
    isn't personal that I haven't replied to your email yet, I haven't replied
    to almost anyones sadly. (I HATE this illness!)

    On that note (again), best wishes everyone and all the best in your battle
    with M.E. (or your loved one's battle with M.E.), until next month.

    Jodi --
    A Hummingbirds Guide to Myalgic Encephalomyelitis:

    Reeves should have been sent to jail in the mid-1990s.

    The CDC shouldn't
    even be involved in ME; after the profoundly botched (nefarious?) Tahoe
    "investigation" of 1986-87,

    the Secretary of Health should have banned the
    agency from further activity in the field and fired the scientists involved.

    (In a rational world.) I'm tired of saying this. I really am.

    PWMEs who
    think it's reasonable, at this late date, to try to negotiate for help with
    this agency

    or any other agency or person employed in the DHHS are complicit

    in their own demise and threaten every other PWME, as well, by propping up
    the status quo.

    Hillary Johnson, author of Osler's Web

    PLEASE BE SURE TO READ both part 1 and 2 postings.
    [This Message was Edited on 06/25/2006]
  2. findmind

    findmind New Member

    good job...! Thanks!

    Do you know when/where Hillary Johnson made that quote? Was it in her book?

    Does she have a website, do you know?

    Thanks again..burying our heads in the sand will not allow us to breathe!

    There's always hope!
  3. sues1

    sues1 New Member

    I always say if your head is buried in the sand....your rear side is exposed. Not smart either.

    I always hesitate to post such news, but I know we have to see all possibilties in order to protect ourselfs and help others.

    Yes I believe it was in Hillary's book, the quote. I have the book, but it is lent out.

    I do not know if she has a website, I have not looked for one from her.This was part of a newsletter and sender said all could be used, but to exclude her email addy as she does not have time/energy for all. Hillary did not do the newsletter.
  4. arronlee

    arronlee Member

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