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Voices From the Shadows

Discussion in 'General ME/CFS News' started by Timaca, Dec 13, 2011.

  1. eric_s

    eric_s Senior Member

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    I would not say the people affected don't matter. I can't believe that. There might be some people who don't care much, but there must be others as well and i would even think that they are the majority. But maybe they don't know enough or are have a wrong impression because they have heard too much biased information? I think organisations must try to better reach out to politicians and present them this kind of evidence. Top quality sientists who say things they way they are. If people at the CDC or similar institutions don't care probably one would have to try to reach people higher up. In the government or in parliament. And i guess we would have to be more present in the public space. I know that's hard to do, but i believe it's possible. It's possible for me, to some degree, and then it must be possible for others too. I know for some people it's impossible to leave the house, but in these many hundreds of thousands or millions that have the illness there are many who can do something. If officials really don't want to help us, i think we need large demonstrations/events. I say events, because where there is interest in us and goodwill there is no need for us to be confrontational. So we could just be there and seek contact with the public, explain the situation, distribute material, sell things, etc. Our powers are very much limited, but still i think we need to try to be more present. So that people outside of our community also learn all these things that many of us and these researchers like Montoya know. I was pretty overloaded for some time now, so it stresses me to even say these things, because it will be tough to organise, but i believe this is what needs to happen.
     
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  2. eric_s

    eric_s Senior Member

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    In Autsralia you seem to be doing quite a good job, though. The group at Bond just got 800'000$ and now Heapsreal wrote that they've applied for another grant of 1.9M$. That's not bad...

    I think one other thing that could help is to try to make testing that provides objective evidence for our problems available in more places. Tests like the mitochondrial function profile, CPET according to the Stevens protocol, tilt table testing, etc. If many people do these tests and there is a lot of data from these tests showing abnormal results, one can show that data to decisionmakers and skeptics. I think this should help.
     
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  3. Dolphin

    Dolphin Senior Member

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    The 800'000 dollars is from a private foundation for CFS and other research.
     
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  4. Dolphin

    Dolphin Senior Member

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    Which is exactly the opposite of what happens in the English clinics and probably Belgian rehab clinics also.
     
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  5. eric_s

    eric_s Senior Member

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    I knew the 800'000 came from the Mason Foundation, but maybe i said it in a way that was not really clear. Yes, it can also be dangerous if governments intervene, especially in places that are less open-minded and where there is a strong lobby for the bad approaches. So probably there it would be better to first work with private doctors or on an individual basis and not officially ask the government to start clinics. And once we have enough data and enough doctors and scientists who understand and one feels they could prevail over the other camp it might be safe to ask the gov't to do something.
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The governments of australia are trying to cut back on disability payments etc and get people functional so they can care for themselves. I think the australian govt realise that sick people are a costly burden on the health system and i think they realise that 'cures' for illnesses in the long run will help the health budget.

    The state government have been on board with the Bond uni from the start and local hospitals have been used for cfs patients to have blood taken etc.When it comes to conspiracy theories, i think australia is maybe more neutral then the UK with wessely and possible the USA with the CDC making a mess of the lake tahoe outbreak etc and both now trying to cover up there mistakes. AUstralia isnt perfect but didnt really make any decisions but just followed the leader, so know one here trying to cover their tracks.

    I think that because of some good cfs/me research in the 1990s in Newcastle australia, that some of the medical establishment realise something medical isnt right with cfs patients. DOnt get me wrong, the treatment of cfs by the majority of doctors is crap but there is a reasonable research history here that if other researchers looked into it, it would convince them of physiological abnormalities with us. The big problem with every country is establishing it nationally as a serious illness and advocating for more cfs/me research and treatments. Maybe because of the lack of arse covering, countries like Norway, maybe australia etc are going to find the answers, maybe also why top American cfs experts are joining forces with overseas researchers is to avoid all the conspiracy stuff of their local governments. I think there are enough smart researchers out there who can find the answers but arent given a chance due to lack of funding and government support. All this is just my opinion.

    cheers!!!
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Generally, I disagree. Yes, it can be dangerous to get more money given to a government entity that wants to crush us like CDC. In that case, I ask the government to first change the leadership (get Unger out). But with an agency like NIH that funds some bad studies, tries to obfuscate and drag it's feet, but also does fund some good studies, it really is worth it to lobby for more funding for more of the good studies. We already have enough evidence that this is a somatic disease and that research is grossly underfunded and even in that underfunded pool, biomed research is underfunded. So what we really need is to keep marshalling our evidence (use the evidence we do have to persuade) and really raise a racket. Otherwise, this BS will just keep going on and on.
     
  8. Dolphin

    Dolphin Senior Member

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    eric_s's comments were in reply to me. I was talking about services in the UK. I would see that as separate from research: governments can fund services and not research and vice versa - in a lot of health systems, they are different pots of money [with the research budget being a tiny fraction of overall government health spending e.g. 1-2% - in the US, the ratio isn't as big as the government is less involved in providing healthcare for a lot of the people].
     
  9. Kate_UK

    Kate_UK Senior Member

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    Bob likes this.
  10. Enid

    Enid Senior Member

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    OK - lets blast to (UK in particular) until this illness comes out from the shadow of the UK psychiatry clique.. Curse them to end of my days ( renal failure). And the pathetic (whoops we got the answer try CBT).
     
  11. Kate_UK

    Kate_UK Senior Member

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  12. Nielk

    Nielk

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    from Chicago Sun-Times- Review of : "Voices from the Shadows"

    A howl of desperation for those who cannot howl
    Uploaded by Roger Ebert on February 10, 2012 3:38 PM | 4 Comments

    Scott Jordan Harris in the UK

    There is a shot in "Voices from the Shadows" that shows a man in his twenties lying forlornly in bed. Like the rest of the documentary, it exists to illustrate the miserable effects of the illness Myalgic Encephalomyelitis, or ME, which is often unhelpfully called Chronic Fatigue Syndrome.

    There is a detail in the shot that haunts me. The man has a beard, of a length and thickness unusual, and unsuitable, for someone his age. He has the beard because he is unable to stand up long enough to shave and because having his parents, or a nurse, sit and shave him as he lays in bed is messy, uncomfortable and undignified. Every morning he thinks about shaving but his reserves of energy are so limited that he has to choose between being able to go to the bathroom because he wants to shave or, later in the day, being able to go to the bathroom because he needs to go to the bathroom.


    He could shave instead of telling his carers what he feels able to eat that day, or instead of eating it, but that's not a sensible idea. He could shave instead of speaking to the friend who will visit him for ten minutes in the afternoon, but he hasn't spoken to anybody besides his parents and his doctors in two months, and he really wants to talk to that friend. He could shave instead of counting out and swallowing the painkillers he needs to roll over in bed without wincing but ... well, that's just crazy talk. Besides, you need light to shave, and electric light gives him migraines and blurs his vision. Every day, this pattern recurs. Although shaving is always on the list of things he wants to do, it never makes it to the top. And so the beard grows.

    None of this is discussed in "Voices from the Shadows" - the man is unnamed and his beard is unmentioned - but I know about it because I have the same beard. I have the same beard because I have the same illness and, apart from three years of remission in my teens, I have had it since I was 11. I'll be 30 this year. I always hope to get better. I never expect to.

    As a child, I was an inexhaustible over-achiever and what, in America, is called a straight A student. At 10, I was an assistant karate instructor and on course to be one of the youngest black belts in Britain. At 11, I had a routine inoculation - a common catalyst for ME - alongside the rest of my school classmates. I was never inexhaustible again. Eighteen hours later, I couldn't lift my arms. My skin erupted in a rash. Daylight burned my eyes. My migraine made me cry. My dad thought I had measles. I wish he had been right.

    I couldn't go back to school for a year. My childhood stopped, and I measured time by counting down the intervals between doses of painkillers. A couple of doctors, and several teachers, didn't believe I was ill. I learned a new term, one whispered to my mother and father when doctors thought I couldn't hear, or couldn't understand: 'school-phobic'. If it hadn't been for my combative parents, my saintly GP and my fast mouth, I would have been referred to a psychiatrist, or reported to a truant officer.

    Eventually, I recovered. I went to high school, and tried to reclaim the time I'd lost. I was captain of the debating team, the rugby team and the athletics team. I was on the basketball team and the swimming team and the cricket team. I wrote the school play. I was champion athlete on sports day two years running. I played rugby for the town and the county and the local club, sometimes four times a week and twice a day.

    And then I started to feel ill again. A few months later I was back in bed, trying not to throw up the little food I could keep down, exhausted by the effort of cleaning my teeth, and as completely reliant upon my parents as I would have been if I'd become quadriplegic. I stayed that way for years. Once, when I was sick of being 16 years old and unable to take a damn shower by myself, I tried to take one while my parents were out. My legs buckled and I had to lie on the bathroom floor. I was there for two hours. I was never well enough to finish high school. Again, there were doctors who thought I wasn't really ill. There still are.

    I'm in a better situation than most of the ME-sufferers in "Voices from the Shadows." For one thing, my symptoms are not as severe as they used to be and I am able to work a little from my bed. (I'm a film critic. Or at least as much of a film critic as one can be without ever really getting to the cinema.) For another thing, I'm still alive.

    "Voices from the Shadows" does not just document the effects of ME: it documents the abuse of those who have it by doctors who fail to recognize it is a physical condition and treat it instead as a mental illness. The World Health Organization has defined ME as what it is - a neurological disorder - since 1969. Especially in Britain, but elsewhere too, sufferers born more than twenty years later are still being treated as malingerers.


    Of the patients profiled in "Voices from the Shadows," two stand out. One is Sophia Mirza and the other is Lynn Gilderdale, whose face - pretty and pale, and somehow serene despite struggling not to grimace with pain - is one of the film's unshakable images. I knew Lynn Gilderdale. I didn't know her well, but then it wasn't easy to know her well. She could barely move, and the idea of her leaving the house was laughable. She had 48 Facebook friends and I was one of them. We exchanged occasional emails. I took longer to reply to hers than I should have. I didn't realize the opportunity to know her would be so brief.



    Lynn's agony was incessant: her ME tortured her with an intensity that shocked me. Before I knew her, Lynn's body had been damaged by doctors who thought she was at worst lazy and at best mentally ill. She never recovered, and her life worsened day on day. In early December 2008, a friend told me that Lynn was dead, and that her mother had been arrested for murder. Lynn's illness had become insurmountable and, one night, she attempted to overdose on morphine but didn't have the strength or co-ordination to do it. Walking in on her, Lynn's mother - in a supreme act of maternal love - assisted with the overdose. An autopsy revealed that Lynn's spine was severely diseased. Her illness had been purely physical.



    The film doesn't describe the circumstances of Lynn's death, and offers no opinion on assisted suicide. (The endorsement of the actions of Lynn's mother implicit here is mine and not its.) This is neither bravery nor cowardice on the part of the film-makers: it is an astute decision made to ensure the debate about this film does not became a debate about assisted suicide. "Voices from the Shadows" is not about the tragic circumstances of Lynn Gilerdale's death: it is about the tragic circumstances of her life.



    Sophia Mirza's ME was similar to Lynn's, and far worse than mine. As a girl, Sophia was bright and beautiful and lively - and then she developed ME, and suddenly she was none of these. But her doctors didn't believe that such a change could be due to physical causes and so they insisted she simply didn't want to be well. In the most excruciating sequence in Voices from the Shadows, we hear the recording Sophia secretly made when those doctors, accompanied by police officers, forced their way into her home and took her to a secure mental institution. There, like other patients profiled in the film, she would no doubt have been forced to exercise - to prove to her that there was no physical reason why she could not. (Exercise only worsens the symptoms of ME; nevertheless, it is still prescribed as a treatment.)

    But she was too ill even for that. The stress of being committed to a mental hospital when she had no mental illness, of being fed food she couldn't eat, of not being allowed to sleep when she needed to, and of being treated at all times as if she was physically healthy, made her symptoms deteriorate to such an extent that a judge eventually ruled she should be allowed home. She never recovered and, two years later, she died. Sophia Mirza was bullied to death by medical professionals who ought to have helped her; no criminal charges have been brought against them. An autopsy revealed that Sophia's spine was severely diseased. Her illness had been purely physical.





    "Visions from the Shadows" isn't technically or artistically impressive. It isn't the bold new work of a brave new film-maker. It is a howl of desperation from co-directors Natalie Boulton and Josh Biggs - the mother and brother of a young woman with ME - on behalf of those who cannot howl themselves. Much of it consists simply of people sitting and talking about ME. What makes this invaluable is that the things they say are seldom said. Or rather, they are seldom listened to.



    No documentary has ever devastated me like "Voices from the Shadows." Unless you are an ME-sufferer, it's unlikely to have quite such a powerful effect on you - and I am glad of that. I couldn't in good conscience urge people to see a film that would do to them what "Voices from the Shadows" did to me.

    Although "Voices" joined "The Artist" and "Albert Nobbs" in winning a prize at 2011's Mill Valley Film Festival, it has no theatrical distribution deal. Boulton and Biggs sell European DVDs of the film through their website; outside Europe, it is streaming for $2.99 from MUBI.com.



    I can't be impartial about this film, and I can't conclude my review of it - if this is a review of it - with the customary, balanced summation of why you should, or should not, try to see it. But I can, with total sincerity, say this: if I could make everyone in the world see just one film, this would be the film I'd choose. It's my film of the year. It'll be my film of the decade.

    As a critic, I spend my life hoping to find films that will be speak to me. "Voices in the Shadows" goes beyond that. It is a film that speaks for me. And I want you to hear it.
     
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  13. justy

    justy Senior Member

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    Thanks Nielk for posting the review - i watched the DVD last week with my husband. It was excrutiatingly moving, my husband sat open jawed in disbelief throughout the whole thing, despite caring for an M.E sufferer and listening to me banging on about it all the time, he was still very shocked.

    It brought home to me how lucky i am to be so functioning and reminded me that the very severe sufferers will never even be able to join us here - i do hope we all remember them and hold them in our thoughts every day.

    If anyone wants to borrow the film in the uk i could send it on - send me a pm. But what i would really like is for the medial professionals and the politicians t see this film. we already know about it and are suffering enough.
    Take care, Justy.
     
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  14. Nielk

    Nielk

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    I found a promo code: popcorn
    You can watch it free!
     
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  15. CJB

    CJB Senior Member

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    Thanks, Nielk, for the code. Just finished watching it. Very hard to watch.
     
  16. Nielk

    Nielk

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    I too just finished watching. I agree that it is hard to watch - very emotional and tremendous feelings of frustrations. I thought it was very well done.
    I would think most people watching it would be very moved by it and they would get a good picture of how severe this illness can be.
    The way they have treated patients in the U.K. is not to be believed. It's like from the dark ages! Is the psychiatry lobby there really so powerful?
    It's a total disgrace. I hope many people will watch this.
     
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  17. Purple

    Purple Bundle of purpliness

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    Until when is this code valid please?
     
  18. Nielk

    Nielk

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    Until April 22.
     
  19. ukxmrv

    ukxmrv Senior Member

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    Nielk, thanks for your support for us in the UK. Yes, the psych lobby is that strong in the UK.

    Patients face a "postcode lottery" in treatment with few understanding doctors. I'm largely without healthcare unless I can afford to pay for it. The doctors who are supportive can often do little in the way of treatment as the General Medical Council will strike them off the medical register if they try. Access to even the means to survive are being threatened as benefits are restricted.

    ME patients sometimes have only their families to fall back on - and that's for those of us lucky enough to have supportive families. There are adults with ME "living" in poverty with little if any support. I know of people in dire situations left to rot on a pittance (which is now under threat).

    It is a disgrace - thanks for saying that.
     
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  20. Nielk

    Nielk

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    I'm bumping this because I think it's so important for people to watch it.
    You can watch the documentary on MUBI.com - use pro code: popcorn and you can watch it free.
    Just put in Voices from the Shadows in the search feature.
     
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