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Guardian: ME is often dismissed - but sufferers like Emily Collingbridge are dying

Discussion in 'General ME/CFS News' started by Firestormm, Mar 30, 2012.

  1. Firestormm

    Firestormm

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    30 March 2012: http://www.guardian.co.uk/commentis...gridge-chronic-fatigue-syndrome?newsfeed=true

    ME is often dismissed but sufferers like Emily Collingridge are dying

    How many young people have to die before 'chronic fatigue syndrome' merits properly funded biomedical research?


    By Scott Jordan Harris

    [​IMG]

    ME sufferers such as Lynn Gilderdale, pictured, and Emily Collingridge have died as a result of the disease. Photograph: David Cairns/Rex Features

    On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six. Major news organisations have all but ignored her death the death of a noteworthy campaigner while suffering from the very condition she tried to persuade the world actually existed just as they continually ignore so many important stories about the illness she had.

    That illness is a neurological condition called myalgic encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. Even those doctors and lay people who acknowledge the illness often refer to it by the ridiculous name "chronic fatigue syndrome", which is almost as damaging to ME sufferers as the symptoms we suffer.

    Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn't cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis.

    Around a year ago, she wrote, "I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now." She is now dead. To call the illness that savaged her "chronic fatigue syndrome" is like calling stomach cancer "chronic upset tummy".

    Remarkably, she was in her healthier periods able to write a book called Severe ME/CFS: A Guide to Living, which is an invaluable text for many ME sufferers. It is published by AYME, the Association for Young People with ME, of which Collingridge was a prominent member. Her most important work, though, was her appeal for adequate biomedical research into ME.

    I recently wrote a piece for the website of the Chicago Sun-Times, discussing both my history of ME and my reactions to the new documentary Voices from the Shadows. For anyone who wishes to understand the agony ME can inflict, and the dangerous ignorance endured by many who have it, the film is a must-see. One of the ME sufferers it profiles is Sophia Mirza, the first person in Britain whose death was officially listed as being caused by chronic fatigue syndrome. Another is my late friend, Lynn Gilderdale, whose mother assisted in her suicide after Lynn's condition became unendurable.

    Both Mirza and Gilderdale suffered and perhaps died because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession. Mirza was committed to a mental institution to treat an illness that was purely physical and never recovered from the damage that did. Gilderdale, too, was referred to a psychiatrist when she needed physicians working from the results of cutting-edge studies. The question we must ask is obvious: how many young people like them, and like Collingridge, have to die before their illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

    Collingridge was a great light for thousands of victims of severe ME whose lives pass in almost total darkness. It is essential that her tragedy is not overlooked. We must all understand that the cause she championed in life the urgent need for proper recognition of, and research into, ME is made even more urgent by her death.
     
  2. Valentijn

    Valentijn Senior Member

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    Wonderful to see such a strongly worded article run on a major paper's website. None of that "GET/CBT can help" BS!
     
  3. Firestormm

    Firestormm

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    It has prompted a good debate in the comments section too Valentijn.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    I cried to read that on a newspaper site. Finally more will recongnise how serious this illness can be and actually is for many of us.

    We live day by day... not knowing if we will be better or maybe dead in the next year or two... many of us getting more and more things medically going wrong with us by each year.
     
    Firestormm likes this.
  5. Valentijn

    Valentijn Senior Member

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    Yeah, some of the comments are pretty bad, but at least it's creating a dialogue. Better than people going on thinking the same thoughts without being challenged.
     
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  6. Firestormm

    Firestormm

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    Two articles in mainstream press in two days. Good news is that it raises awareness.

    Bad news is that it takes a scandal like young people dying or being neglected to make any impact.

    Even more bad news is that the impact is unlikely to sway medical opinion or affect research direction or funding directly.

    I do hope Scott contacted Emily's parents before his article was published. I feel sure he did. Cause of death has still not been officially reported of course.
     
  7. Boule de feu

    Boule de feu Senior Member

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    My question, exactly!

    How many young people have to die before 'chronic fatigue syndrome' merits properly funded biomedical research?


    How many will have to die...

    How many will have to suffer...

    Chapeau! to the journalist. He wrote that Lynn was his friend?
     
  8. Enid

    Enid Senior Member

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    About time too Firestormm - having passed out three times amidst Docs telling me it was all in my mind - hat's off to those who know the real thing and continue to have to fight ignorance. (The whole pathetics of a psycho industry - hardly scientists - one wonders if real medicine at all - blind to biomedical findings - all I can say is try it out).
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Enid
    think you mean "psycho-analist" ? :p

    CBT = Crazy Burglers of Turds?! :eek:



    *puts on jacket of Protection from Outraged Mods +5* :D
     
  10. Min

    Min Guest

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    I don't think this is in the newspaper, it's just a member of the public's opinion on line on their 'comment is free' site
     
  11. SOC

    SOC Senior Member

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    You may want to go with the full armor, helmet, and gauntlets my friend. The jacket might not cover your throat or backside, and is absolutely no good against a strong Slap on the Back of the Hand, or Wet Noodle to the Head. I think I'd go with a simple Invisibility Spell and sneak away, myself. These mods know their stuff. ;)
     
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  12. jimells

    jimells Senior Member

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    The poor treatment these young people receive is a crime and a tragedy. To live like that and never even have a chance to have a life! At least I had a life for about 50 years - that's long enough to do a thing or two.

    Of course this is hardly the only disease where the patients are totally discounted and disparaged. A few days ago I listened to a U.S. public radio program called "The World". They told the story of a policeman in the U.K. who developed an enzyme deficiency that caused him to give off an odor of dead fish.

    Even though the odor was smelled by people around him, the brain-dead doctors told him, "It's all in your head!" I didn't hear an explanation of how a person's psychological illness could cause other people to detect imaginary odors.

    He was forced into a medical leave and had to end his career. Surprise, surprise, he became extemely depressed. I suppose at that point he was told all he needed was exercise and therapy.

    Believe it or not, he finally found a competent doctor who identified the disease, some kind of rare genetic disorder. Eventually he started a career in computers, which meant less sweating and less fish odors, and got his life back together.

    While it's too late for Emily and her family, maybe someday they'll write a happy ending for some of us as well.
     
  13. anniekim

    anniekim Senior Member

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    The writer has m.e. Great article
     
  14. Firestormm

    Firestormm

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    I think you're right Min. And the Sun feature yesterday may not have been in the hard copy either. Still, the internet does attract a heck of a lot of 'hits'. Indeed I can't remember the last time I bought a paper and I try and read the news online every day if I can.
     
  15. allyb

    allyb Senior Member

    Firestormm, or anyone who may know....... is this story in the actual paper or is it just online?
    I asked my son to get a copy and it is not in,
    I was gutted because it is such a strong influential piece
    If it is online only, might it be in tomorrows paper?

    The catalyst for both pieces seems to have been the DVD, Voices from the Shadows. Its such a powerful tool as this coverage shows.
    I am really not good at the mo, and writing is difficult but I just wanted to ask whilst there is momentum in the press here; has anyone else approached any media or anyone influential with the DVD??
    Or has anyone any ideas?

    I have given a copy to my MP who is pro active, also my local paper and posted about 20 to people I know asking them to pass them on.

    Sadly though, when my friend gave the DVD to our GP he said that he wouldnt watch it as he would rather spend the hour with his children, (who thankfully must not have M.E) which I could have understood had it been my holiday video. I had intended (silly me) as I had paid for it, as a gift to be used a valuable educational tool and resource. :worried:

    I will keep chipping away though, doing what I can , when I can.

    Kind regards
    allyb

    PS Thanks Min, just read your post
     
  16. SilverbladeTE

    SilverbladeTE Senior Member

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    I think there's a bunch of problems:

    1) The "professional" classes are great place for psychopaths and the like ot hide, seriously
    if you are four times more likely to meet a psychopath in Big Business..what's the odds for medical, police, legal, political sphere, hm?
    Some how I don't think that the "professional classes" would let themselves be part of any study to find such numbers.
    (and psychopath does not = atuomatic raving mass murderer, most aren't or ever will be)

    2) The despicable way young doctors are treated I'm sure must give rise ot serious mental health problems, 100+ hour work a week is jsut criminally insane!

    3) It's the oldest professional body iirc in the world (BMA) and with age and power, comes corruption
    hence such things, like the police, MUST have external, independant systems of review etc
    Instead, docs police docs...

    4) Much as I love the NHS, simple fact is, larger and organization worse beauracracy and ego contests etc etc all get, jeesh
    Gives much more places for scumbags to hide.

    5) Victorian attitudes and fact many docs came from a strata of the Middle Class that was incredibly out of touch with reality, the "Raj" as it were :p
    So younger docs today show much less of such.
    I loathe when folk go on about "the Good Olde Days!" rubbish! they were vile!!
    Rampant racism, abuse top to bvottom of women kids AND men (men used as cannon/mill/mine fodder and women who dared to complain were locked in asylums, sex abuse was so common lot of young women even girls were locked away to hush such up etc etc)
    Good Old Days, ha!


    Entire UK Establishment needs rooted out, top to damn bottom, it's rotten to the core :/
     
  17. anniekim

    anniekim Senior Member

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    Sun article was in actual paper :). Guardian article is not in print version
     
  18. Firestormm

    Firestormm

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    Thanks Annie!
     

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