The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Article: ME drove my daughter to suicide

Discussion in 'General ME/CFS News' started by Ember, Apr 22, 2012.

  1. Ember

    Ember Senior Member

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    by ANDREA PERRY, femail.co.uk

    http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html

     
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  2. Wildcat

    Wildcat

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    "After a battle with her local health authority, who initially refused funding, she was referred to an in-patient unit in Romford where she made a slow but steady improvement. But a series of relapses set her back nearly five years.

    She had become so weak that she was too frail to attend six-monthly hospital appointments with the local consultant and instead her mother went to update him on Fiona's state."


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    .


    The Romford Clinic Offered no more than CBT and Graded Exersise (Plus the Fraudulent NLP Scam 'Lightning Process', promoted by the Romford Clinic Lead, Lesley Findlay) - Romford was a Scandalous 'So Called' ME Service:


    How many more ME deaths are we to read about in Britian???? - Before determining that the WHO Classified and Serious Neurological Immune Disease Myalgic Encelphalomyelitis, is a Serious and FATAL Disease, that is NOT defined by Fatigue - and that people are Dying from ME in Britain every Month!!

    We desperately need a more decisive Criteria (Canadian Consensus Criteria or The International Consensus Criteria) to identify ME, and to separate ME from other unrelated conditons that include fatigue!
    .
    Because, it is becoming increasingly clear - that Myalgic Encephalomyelitis, is Fatal.
    .

    .
     
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  3. free at last

    free at last Senior Member

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    Hi Ember
    Its a disgrace that this is going on worldwide. Its turned into a battle of specialists.Of who is right, is it mental ? is it organic ect. But it must run deeper than that because cases like this poor girl, and many others we know about, should surely spur some in influential positions, be it either goverment or medical, into action, But we see it does not for the most part. I can only guess why, and i think the main reason is the stigma, that those in positions to study this illness, that have got it so clearly badly wrong, are influencing the masses, who are in a position to do something about it.

    Its not acceptable that if a tumor shows on a organ, then sympathy and treatment starts straight away. yet those in the stigma of ME/CFS could be on there last breath. Yet still get the dis belief, that these prominent specialists have created around the world. Untill evidence arises that is indisputable. And i mean INDISPUTABLE. This lack of care, or caring, will continue. If that evidence ever comes to light. we will see the apologies that we have seen in Norway recently. But untill then forget it. Many will continue to suffer alone and scared, because nobody of any power is really listening. I know theres a air of change, i know theres some specialists who are speaking out. But untill they have proven there case. It really will not change the big picture. And its the big picture that is the thing that will stop this neglect of those who are dying in silence. Which is why the xmrv saga has been such a huge dissapointment, and likely damaging. Because once again those in positions who we really need to admit they was wrong, can still stick to there guns, and say see, told you so, no consistent organic illness will be found, which will influence goverment figures, medical proffesionals, GPs, on and on. My sympathy to the family of what this poor girl suffered, Its just heartbreaking.
     
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  4. free at last

    free at last Senior Member

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    Yes i agree, small changes can be bigger than what we think sometimes. You are right, this is a first start, towards that road, it may not change everything overnight, but its a start, because untill fatigue is seperated, from the severe, often ( but not always ) starting with flu, ME. GPs are still being trained its all the same thing, and another death, and lack of proper care will continue.
     
  5. Wildcat

    Wildcat

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    "Failure and Discrimination" towards those diagnosed with 'CFS' or 'ME'!!!

    Too Right! Neither the Medical Establishment, the NHS, Colleges of Medicine, the MRC, or the Leading 'CFS' Charities (AFME. MEA, AYME, The Sussex CFS Society)... have really addressed the total Failure of British Policy on ME - or its 'morphing' of ME into an all-purpose fatigue disorder.

    .
     
  6. free at last

    free at last Senior Member

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    Its a belief system gone mad Wildcat ( on there part ) these deaths prove that, its so damm weird they cant seem to see it so clearly ? No wonder we have so much distaste towards those that have let this situation reach this point. Even now i cant i belive how i was left to get on with it, so i know why these deaths are occuring
     
  7. taniaaust1

    taniaaust1

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    When will those who are supposed to help us START LISTENING to ME people. Why did she have to battle with her local health authority to get the care she was saying she needed and obviously crying out for? One wonders what impact that battling would of had on the ME/CFS... no one can doubt that any impact would of been negative.

    She obviously knew she was sick enough to need some form of inhospital care. Who knows what it was which helped her. Ive found that just being cared when when you need to be eg being cooked for or whatever. Can help us recover some from this illness due to we are in fact doing less (less PENE etc)

    If she did have any CBT while in care, it may not be necessarily the fact of doing that that helped but rather due to having to just do less. When we they understand that its excertion which makes us so much more worst esp those who have this illness severe?

    DOH.. so they are just realising this? The NHS and other health depts world wide are the cause of so many of these suicides for so many different reasons thou I bet they dont take any responsibility for them.

    The lack of basic care to a very sick patient group which gives many no options to keep going on in the hellish way many have to do.. not being able to be clean.. not being able to cook and feed oneself properly etc. Basically no life due to the lack of care, lack of help and rejections of doctors to try to do all they can to help all cause they dont believe how very sick most are.

    Suicide is just one step further, from basically not having hardly what one could call a life.

    Any they dont understand why ME/CFS people are angry and angry about how we are treated by health professions, governments and health departments.. what idiots. There would be something wrong with us if we werent angry and upset about so many of us dying due to bad care, no research etc.
     
  8. ukxmrv

    ukxmrv Senior Member

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    This looks like a very old report (although the post above shows a current date)? One way to tell with the Daily Mail is to check the comments section and if it shows that no comments are being accepted it is usually an old report. They don't return the date of publication if people search for them on the interent,

    Tony Wright hasn't been Chairing the APPG for awhile. The CMO report was years ago (2002). Action for ME aren't likely to have highlighted severe suffers or suicides like this for a while.

    So, nothing has changed except that AFME got worse, the Romford Clinic got worse. To think of it every thing got worse.

    RIP Fiona Smith.
     
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  9. Firestormm

    Firestormm

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    Morning,

    Just wondering if this is indeed an article from today i.e. 23 April 2012 or not? Only it would appear to relate to events far earlier, and I noticed the comments are closed in the Mail - also the AFME logo is I think their old one and Tony Wright is no longer an MP....?
     
  10. Ember

    Ember Senior Member

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    I'm afraid that I simply went by the date shown at the top of the page. I did think after posting the article that there was something odd about reporting a nine-year battle to get help after Fiona became ill in February 1992.

    My apologies if this article indeed dates back to 2002. Oviously I don't know much about Daily Mail on-line practices. Perhaps the best I can do now is to remove the date shown in the post.
     
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  11. Tia

    Tia Senior Member

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    I recognize it so much! I've tried to commit suicide several times myself but didn't have the guts to pull through.. It's worse than death to be left laying in your own agony for years and years like this. Death is preferrable. So I really do understand her..just wish I had the guts.
     
  12. taniaaust1

    taniaaust1

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    Makes me feel better knowing that this report is old so they were aware of those things a long time ago (so not as blind as it appeared they were).

    it dont thou make me feel better knowing nothing has been changed at all in the years since.
     
  13. snowathlete

    snowathlete

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    its good that this made the press, so many dont. Its shocking how many people actually die of this illness, around 3% according to the Hummingbirds site. May not sounds like a lot but it is. None of these people should be forgotten, each should be visible, as each has been failed.

    I know there are some lists on some sites, memorials and the like, but how many of these people actually find themselves (their names, their photos) in front of politicians/policy makers? Does anyone run a campaign like that?

    I just fear that these people fade into the background, and their sacrifice isnt made to count.
     
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  14. redo

    redo Senior Member

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    This never stop to amaze me. 0.00025 billion. I think that for any syndrome, whether it be MS, lupus, FMS or other mysteries, society should spend at a bare minimum 10% of what the disease cost, every year, for science. Instead, we keep getting richer and richer, and the gross national happiness is at holt. When we could find money to launch a person to the moon in the 60s, there should be money for unravelling syndromes in the 21st century.
     
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  15. taniaaust1

    taniaaust1

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    I think it was Dr Elizabeth Dorsett (?) who first made that 3% statement.

    If 3% died from this.. it makes one wonder how many must get very close to death with it.. possibly 4?? times as many?? If one thinks of it in that way, it means that in something like 10% it would be life threatening.
     
  16. Foggy

    Foggy

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    Its disgusting how the medicos treat ME sufferers, no matter where you live.
     
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The medical profession sucks ass, like it or not
    and if mods don't like that statement TOUGH.
    They are not gods, but men, with feet of manure, not even clay.

    "All it takes for evil to flourish, is for good men to remain silent"
    That is the problem
    about 1/3rd of MDs are incompetant, bigots, abusive, perverts etc, and that's from personal experience (ME abuse is jsut one part, try sexual molestation of female patients as another)
    One third are competant, but are gutless and go with whatever the surrouding clique does.
    One third are awesome, but few stop the scumbags because the "profession" has a huge nasty "Code of Omerta", where they work to keep silent their crimes and abuses, similar to the Catholic Church issues, the profession is far more concerned with it's "reputation" than the good of it's patients.
    if that was not true, then Dr Harold Shipman could not have become the world's worst mass murderer!

    Time folk grew up on this: that profession needs PURGED, hard.
    At least the scumbags, mostly older generations (probably due to social class/background/history etc), are retiring or dying.
     

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