ATTN: First OFFICIAL DEATH from Chronic Fatigue Syndrome

Discussion in 'Fibromyalgia Main Forum' started by 1sweetie, Jun 16, 2006.

  1. 1sweetie

    1sweetie New Member

    An article from news service dated June 16, 2006 states that: Chronic Fatigue Syndrome has been given as an official cause of death - apparently for the first time in the world.

    Parts of the article include:

    On Tuesday, coroner Veronica Hamilton-Deeley of Brighton & Hove Coroners Ct, 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 women, Sophia Mirza, has suffered from CFS for six years.

    The coroner's verdict is a breakthrough for those who argue that CFS is a physical condition, possibly with its roots in the immune system. Dominic O'Donovan, N 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.

    CFS specialist Jonathan Kerr of St. George's, University of London, says he is not surprised that inflammation in the spinal cord has been found in someone with the disease, as it is known to be associated with it. He says that the immune system tends to be over-activated in people with CFS and this may underlie the inflammation of the neurological tissue.

    The article has more information and you may can find it at www. The article was titled First official death from chronic fatigue syndrome and was written by Rowan Hooper.

    I received this article because I am subscribed to alerts on Google search for articles on Chronic Fatigue Syndrome & Fibromyalgia.

    [This Message was Edited on 06/16/2006]
  2. lenasvn

    lenasvn New Member

    I absolutely love this!!! Many thanks for posting this, this is what the "fingers-in-the-ears" people need to read!!

    Bless the soul of Sophia Mirza.

    Your link won't work, can you reinsert it?
    [This Message was Edited on 06/16/2006]
  3. musikmaker

    musikmaker New Member
  4. fight4acure

    fight4acure Member

    Thank you for sharing this information!

  5. MamaDove

    MamaDove New Member

    Just wanted to thank you for passing this along, I copied it and will bring it to my support group tomorrow...

    Sophia's experience will surely benefit those suffering with CFS, to finally be recognized as serious...

    Thanks again...

    Peaceful days ahead~Alicia
  6. 1sweetie

    1sweetie New Member

    Thanks to all of you that found the correct link. I put in the link that showed on the page I copied.

    I will delete my link and have insert the one that you found.

  7. livin4him

    livin4him New Member

    have often wondered about this.
  8. painandagony

    painandagony New Member

    I can just hear my friends now: Oh she probably died from something else, they just don't know what it is yet.

    So, so, so, scary. Poor Sophia. I can only hope that it does help us to get more "credit".
  9. 1sweetie

    1sweetie New Member

    I am glad that I found the article and I posted it for informational purposes. Now I feel that more needs to be said. She is not a statistic but someone that had to do battle to prove her illness.

    I honor this woman that died and her family, for not only dieing from this disease, but having to battle and to suffer greatly from not being believed.

    It is admirable of the mother to be concerned for others during her time of loss.

  10. kholmes

    kholmes New Member

    I am very saddened to read about the death of Sophia Mirza. Let's keep her family in our thoughts and prayers.

    Good for doctors O'Donovan and Kerr for being willing to testify and attribute her physical problems to CFS/ME, especially in the UK. Though her death is tragic, this is actually good news for furthering the research of CFS and strengthening the credibility of people with this all-too-physical illness. It's interesting how validated her mother sounds at the end of the article, despite her grief. The coroner's results are a kind of victory for Sophia.

    And please, let's not let this news add more fear or stress to what we already feel, having to deal with CFS or Fibromyalgia day to day; there's a very wide range of severity and symptoms with this illness. The fatality rate of those with CFS seems very low.

    [This Message was Edited on 06/16/2006]
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  11. Jordane

    Jordane New Member

    Only 32!!! Pray for her and her family.

  12. NyroFan

    NyroFan New Member

    How could it not be possible?

    Like someone else said: awful

    Yet: the doctors might pay a little more attention.

  13. bioman85

    bioman85 New Member

    How does CFS cause dehydration? This seems really flaky to me.

    And congrats to everyone excited about this news.[This Message was Edited on 06/16/2006]
  14. 1sweetie

    1sweetie New Member

    I was discussing that with my DH. My only thoughts were that I was so ill when I first crashed that I could not care for myself. I also know that many with CFS are dehydrated and do not know it. It makes orthostatic hypotension so much worse. My blood pressure was dropping 40 to 50 points every time I stood.

    No one told me to force fluids. I started with a neurologist and many specialist before I got a diagnosis.
    I do not know the circumstances but I have been "through the loops" with the medical field and anything can happen.

    They put me into respiratory arrest during the time that my blood pressure was dropping so dramatically. My husband saved my life in the hospital or I would have been a statistic also.

    I certainly am not excited about anyone's death and neither has anyone else that has posted seem excited. You need to rethink what you said. It was hurtful. The post was for information and as I later added we should think of the individual and her family and while I am saying a prayer for them, I will add one for you.

    [This Message was Edited on 06/16/2006]
  15. findmind

    findmind New Member

    Thank you for posting this information.

    Yes, CFS can cause dehydration and even death from causes more than that...

    I too have been severely dehydrated even while drinking 3-4 quarts of water per day! My dr. finally said I
    had a form of "centrally mediated" diabetes insipidus, for which I had to snort some type of nose drops which helped me retain my fluids.

    It passed withing a few months, as many CFS symptoms do, but untreated I have no doubt it could have killed me.

    See the Memorial List at the National CFIDS Foundation's site if you need any more proof of the seriousness that CFS can be to some....ncf-net dot org.

    Sophie is at peace now. My deepest condolences to her family and loved ones.

  16. sues1

    sues1 New Member

    I received this earlier, regular email, and have been agonizing on rather to post it.

    It is not that I felt that it should not be published, but I care about everyone here and did not wish to panic anyone.

    I feel like what KHolmes posted here (in part of posting):

    And please, let's not let this news add more fear or stress to what we already feel, having to deal with CFS or Fibromyalgia day to day; there's a very wide range of severity and symptoms with this illness. The fatality rate of those with CFS seems very low. (Amen from susan)

    For dehydration:
    I know of someone that died from a broken ankle, blood clot had formed. So anything i possible but not always probable.
    I had found that Pedilite generates me, I use the Kroger copy cat brand, cheaper and it works well. I feel better and ache less. I am going to check with health food store on their powered electrolyetes (SP?) which should do the same thing. I will see.......Blessings.......Susan
  17. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    This is "exciting" news. This dear lady certainly isn't the first to die from it, God bless her soul, but this is the first doctor validated and highly publicized admission of it. It is usually well suppressed and attributed to other causes, and all the medical literature falsely declared that the syndrome isn't ever fatal. I don't believe its often fatal, but I sure as heck always knew that it could in severe cases kill.

    I lost so much weight, uncontrollably while trying so hard to gain and was afraid I wouldn't stop. My blood pressure ws so low, 80/30, I saw star just from turning my head and was too weak to stand to brush my teeth, and was dizzy and nauseaus always.

    There is alot of pressure to suppress the fatality of this disease, but there have been other published articles of deaths. A regular here knew someone personally, a young man who quickly went downhill and died, and clearly from CFS. but insurance have had clauses that state specifically that the coverage won't pay out if the death is listed as CFS. That's alot of pressure to fudge the facts.

  18. butterfly8

    butterfly8 New Member

    Tragic though her death was, it has helped to provide publicity for cfs, My cfs doctor told me several years ago that several of his patients had died from cfs related conditions. However, the death certificate etc. always stated the related condition and never the cfs. eg., kidney failure.

  19. 1sweetie

    1sweetie New Member

    Not only does this happen with CFS as Jeanne mentioned, the listing of death on most death certificates for cancer is not cancer. Most people die from malnutrition, pneumonia, renal failure, etc. The same is true for many diseases. The important thing is that the doctor's acknowledged CFS on Sophia's certificate of death and that in the end Sophia and her family got the recognition that had apparently searched for while she was alive.

    Sometimes it list that cancer was the contributing factor. I know this because, as a former banker, I saw many death certificates during my career. They have to be presented to you to provide proof of death.

    I did not post the article to scare anyone or as one party mentioned excite anyone (thought that was really strange). I thought that it was informative and very SAD.
  20. Cromwell

    Cromwell New Member

    I was about to post same as my DH reads that mag and told me. About time though I am sad someone had to die first.

    Anne C

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