The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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IT: 'I never imagined my sister would die' Roisin Wilson about her sister Sophia

Discussion in 'General ME/CFS News' started by Firestormm, Jan 24, 2012.

  1. Firestormm

    Firestormm

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    Cornwall England
    24 January 2012: http://www.irishtimes.com/newspaper/...310666209.html

    BY RISN WILSON

    'BEFORE MY sister Sophia got Myalgic Encephalomyelitis (ME), I had subconsciously developed a disparaging view of the disease. The little I knew about ME at the turn of the century was from how it had been portrayed in the tabloid press.

    ME had been painted as some kind of luxury illness, labelled yuppie flu. It seemed a very boring disease and I cant say I had any interest in it.

    I had got the impression ME was kind of a sabbatical illness, an excuse for a few weeks off work to recharge the batteries. So when my mum told me Sophia had ME, I wasnt that worried.

    Sophia, two years my junior, had had meningitis before and malaria twice. What was ME compared to those bad boys? My feisty sister could easily whip this lily-livered ME.

    I was living in New York at the time and on transatlantic phone calls with our Irish mum, she would tell me how my sister had had to leave her London life because she was too ill to look after herself. She told me Sophia was getting worse and that nearly everything hurt my sister.

    I thought my mum was exaggerating; how can everything hurt Sophia?

    Light hurt my sister, noise, smells, vibrations, the list went on. My then 26-year-old sister had almost zero energy and had to lie in a blackened room day and night, wearing a blindfold and earplugs, in constant pain.

    If that wasnt bad enough, the doctors treating her said this disease was a mere wrong belief, despite doing no physical tests on their patient. And just for good measure they called my mum an enabler, for believing her youngest child was genuinely ill and threatened to remove her as Sophias carer.

    I listened to what my mum told me, but I couldnt really take it in. How could Sophia be so desperately ill for months on end? The ME my mum described was like nothing I had read about on the net. ME is often referred to as Chronic Fatigue Syndrome (CFS) and the information my Google searches revealed at the time did not correspond with what my mum was describing about Sophia. I believed my mum, but I could not grasp just how ill my sister was.

    By the time I came back to Britain, I was still none the wiser, but I was more clued up about telling people about my sisters disease, or rather not telling people about it.

    Upon hearing of my siblings ME, peoples reactions ranged from Is that all? I thought you were going to say something serious from your tone of voice, to polite humour-her nodding and baffled, sympathetic faces, and then the slam dunk of some responses.

    Maybe your sister has got issues with your mum/dad/whoever, or words to that effect. Issues! I snapped at the last person who suggested that, Issues! If you got ME from having f***ing issues, then the whole b*****d country would be down with it!

    Not long after I returned to Britain, 9/11 happened. My then husband was in the Twin Towers that day, and with hindsight, I can see I over-reacted to 9/11, because it was on the strength of that, that I decided to become a nurse.

    Throughout my three years of nurse training, I didnt tell a soul about Sophia and the ME. I dont think I even mentioned I had a sister. I saw how ME was viewed from the other side of the fence and it wasnt good or accurate. One day during my second year of training, I was on my cardiac placement and telephoned my mum on my break.

    She was distraught, because at that very time I was calling her, the police were breaking down the door so Sophia could be sectioned into a mental hospital.

    I didnt know what to do, so I called my brother Shane, who went straight down to help mum and Sophia. I then went back to the ward and couldnt say anything to anyone.

    And it was around that time I nearly cracked. I very nearly told my personal tutor about my fears and concerns for my sister. I was about to blurt it out once when my tutor mentioned that our confidentiality could be broken if somebody was at risk or over something illegal.

    Confiding about Sophia could have me seen as an enabler, it could have jeopardised Sophia even more; I couldnt risk it. I stayed schtum and blamed my tears on PMT and the stress of course work.

    Visits to Sophia were rare and precious, they had to be in the dark with only a smidgen of light. Her body may have been torturing her, but Sophias mind was still all there. Those 13 days in the mental hospital had done irreparable damage to my sister, though, she went downhill from there.

    I never imagined Sophia would die from ME, I thought she would outlive the lot of us, by years. But my sister became the first person in England to officially die from ME, a dubious honour indeed.

    Sophia was 32 and had been bedridden for the last six years of her life. I was in shock and grief-stricken for months after her death, but in among all the pain, there was a tiny part of me that felt lighter; that tiny light was one of relief, relief my sister was not suffering so unbearably anymore.

    The post-mortem revealed the physical evidence of Sophias ravaged nervous system, proof at last her disease was of physical origin. Sophias death from ME made news around the world, but it hasnt changed how people with ME get treated in Britain well not yet it hasnt.

    When Sophia got sectioned, the event was tape-recorded. This profoundly moving audio is included in the award-winning documentary Voices from the Shadows , a film made out of sheer desperation by the family of a girl who suffers with severe ME.

    This documentary includes the stories of other ME sufferers and carers, as well as expert medical opinion and facts. This film needs to be shown to as wide an audience as possible.

    Voices from the Shadows will literally save lives and spare much unnecessary suffering and bring much-needed understanding about the reality of ME. This documentary urgently needs a way to be seen by the masses. Please go to Voicesfromtheshadowsfilm.co.uk for more information.

    Sophia suffered and died from ME, but nobody else should have to.'
     
    taniaaust1, ahimsa, beaker and 5 others like this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Personally, I'd like to tattoo that onto Wessely and Reeves' arses, so when they bend over to sell their psychobabble ability to hush up embarassing problems to their next client, the client may read the results of their actions.....
     
    Nielk, maryb and Min like this.
  3. Enid

    Enid Senior Member

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    Thanks firestormm - these things need to be said over and over again until the UK medical establishment in denial over decades actually listen for once. I will personally curse them to the end of my own days as reactive autoimmunity sets in.
     
    Glynis Steele likes this.
  4. Kate_UK

    Kate_UK Senior Member

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    The DVD of Voices from the Shadows is now available to pre-order http://voicesfromtheshadowsfilm.co.uk/2012/dvds-now-available-to-pre-order/
     
    Min likes this.
  5. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    Irish Times Letters.

    Until we identify M.E. (Myalgic Encephalomyelitis) as a seriously disabling neurological illness, with a physiological cause and underlying disease process, quite separate from "fatigue" and its bedfellows, "chronic" and " syndrome", people will remain neglected, ill for decades and there will be some martyrs, including Sophia Mirza (I never imagined my sister would die, Irish Times, 24 January 2012 -- http://www.irishtimes.com/newspaper/health/2012/0124/1224310666209.html), Lynn Gilderdale and many others around the world, whose cases are not investigated, either in life or post mortem and from which tragedies we - quite disgracefully and unforgivably - are not learning.

    Chronic Fatigue Syndrome is a collective term that cannot be used in the singular, since there are at least seven different sets of criteria for it and it has been known to harbour people who have been subsequently correctly diagnosed (with, for example, Hypothyroidism, Coeliac, Crohns, Lupus, Lyme, Bechets, Myasthenia Gravis, MS and, of course, there will be others and unknowns), thereby delaying possibly suitable treatment for them. It is very likely that Chronic Fatigue Syndromes contain people with M.E. because, since 1988 and especially in the UK since the NICE guidelines of 2007, doctors have been told to prefer CFS. Diagnoses have been changed on medical records from M.E. to CFS in obedience.

    Yet researchers, having some reputation and influence, refer to Chronic Fatigue Syndrome as, "This illness ..." as though it is a single illness. others use a conjoined term, either way, CFS/ME, as though M.E. is one of a number illnesses under the umbrella of CFS (though I have never seen any other than M.E. so added after CFS/), or as ME/CFS, as though a collective term can somehow be a subset of M.E., especially when M.E. is, at the same time, said to be included within CFS. Most astonishingly, some allow "all of the above" (and even more, as synonyms, such as Post Viral Fatigue Syndrome, Chronic Fatigue Immune Dysfunction) and more than one set of criteria in the same study. I have never seen such a contaminated hotchpotch tolerated in any other area of study.

    In plain layman's terms, we are not comparing like with like. Not only is it logically untenable, studies which proceed, using any of the above will inevitably be invalid and unreliable. Most importantly, conclusions drawn about recommendations for treatment may not only be ineffective for people with M.E. but, in some cases, irrecoverably harmful. Such cautions have been issued by research scientists since 1988, when Chronic Fatigue Syndrome was born (Holmes et al., Chronic Fatigue Syndrome: A Working Case Definition, Ann Intern Med. 108:387-389, 1988) but stubbornly ignored.

    There isn't a fence to sit on. Unless you embrace Myalgic Encephalomyelitis (and I mean regard the World Health Organisation definition ICD-10 G93.3 and the International Consensus Criteria as merely a starting point and accept that nothing is sacrosanct - not even the name Myalgic Encephalomyelitis) you, by default, permit a level of contamination that is sufficient to render conclusions not only untrustworthy but perilous.

    In stark contrast, the M.E. Community Trust.org is dedicated to increasingly purifying the group of people most likely to have an illness that is best described as Myalgic Encephalomyelitis by eliminating type 1 and type 2 errors of omission and commission (that is, not excluding people who should be in and not including people who should be out) as a solid foundation. It would be of serious concern to think that researchers do not appear to know these High School textbook rules of experimental design; even more worrying if they did but thought they did not apply to them.

    Delays in progress, moving forward, can be due to inertia of people affected by M.E. not being sufficiently vocal or writing in support of us, as well as by reverse thrust, in the opposite direction, by the old guard CFS aficionados. It doesn't have to be aggressive but it does make it adversarial: If they will not dissociate their conclusions from M.E., we shall have to divorce ourselves from this partner enforced upon us in a shotgun wedding. We shall challenge in every stepwise progression that is made necessary by lack of response, (1) research proposals, (2) work in progress, (3) pre-publication stage and (4) if published, we shall call upon the publishers to retract, using the precedent of the XMRV saga (Retraction of Lombardi et al., Science 326 (5952) 585-589, 2009 in Science, 23 December 2011 -- http://www.sciencemag.org/content/334/6063/1636.1.full?sid=75056ed2-3fe1-43bd-8800-230299c64209) for the same principle of contamination.

    It would be better if they were to learn later rather than not at all. If we are ignored by people, who have some motive considered more important to them than people affected by M.E. - such as career interest or profit motive - then the work is not only logically and scientifically but also morally untenable and things are even worse than I believe.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org
     
  6. *GG*

    *GG* Senior Member

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    Concord, NH
    Thanks for posting this. Hopefully her sister is/will help in the UK or perhaps another country, which will eventually help the UK change it's "treatment"' in a major way!

    GG
     
  7. Nielk

    Nielk

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    This is a real gut wrenching read/fact of ME.
     

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