b Trailer video | Voices from the Shadows Voices from the Shadows

Trailer video

The first trailer for ‘Voices from the Shadows’ released with our announcement of the film’s completion in May 2011.

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  1. Jane Colley September 1, 2011 at 9:45 am #

    Well done for making this film. It looks to me as though it will portray what living with ME is really like.

    My daughter had an ME misdiagnosis for half her childhood and lost years of normal life. When she became really ill she spent most of her life lying in bed, white as a sheet, often noise and sound sensitive. On bad days she couldn’t bear to be touched.

    Eventually her illness turned out to be Lyme Disease – she had been bitten as a tick as a small child. When she was treated for this she regained her health and has now been living a totally normal life for the past four years.

    She never wanted to be ill, she just wanted to get well. The big problem is that children like her are invisible and totally neglected by the health system.

  2. Jan W September 22, 2011 at 1:45 pm #

    Thank you so much for all the time and effort and money you have put into making this film. I so hope it will be the beginng of the message getting out to the medical profession the media and the public that M.E patients ARE really sick, DO want more than anything to get better and that our treatment is nothing short of a scandal which is being covered up.

    I have been ill for 17 years now and lost so much of the life I should have had. It is frankly unbelievable that the terrible deaths of Lynn Gilderdale and Sophia Mirza among so many others, can have been so hidden from public view or professional interest in this country.

    For myself, I learned fairly early on that the best way to stay as well as is possible is to keep away from NHS doctors as much as possible. Their ignorance and satisfaction with that ignorance is astounding and does more harm than good.

    Instead I read the research papers, educate myself and provide myself with whatever treatments and care I can afford that have proved helpful. I remain mostly housebound and partially bed bound.

    The scientific research is overwhelming but still ignored. I think there is an excellent case for a class action lawsuit against the UK government for its deliberate failure to provide research, treatment and support for a disease they want the public to believe does not exist because it would cost too much to deal with effectively.

    We must get the embargo on the MRC research files lifted. Even state secrets are not embargoed for this long and now we must wait until 2071. What is it they are trying to hide?

    • Rita March 26, 2014 at 8:27 am #

      I agree with the above lady. I have lived with it for 12 years and have learned to keep what I have a secret for fear of maltreatment…… I just do the best I can with what I have every day and do not tell anyone because of the horrid mislabeling. Here where I live if a doctor thinks you have ME/CFS, they actually discriminate against you and don’t want to see you. I had a nurse tell me confidentially that the doctors in this city think people with CFS are lazy and malingerers. There are very few specialists here and I have been refused required treatment because of my illness. So now, I rarely go to the doctor for anything. What for? to be abused? and the time and energy it takes to get there is more than I can handle anyway! So if I go it is for a lung infection that can be treated at a walk in clinic without me saying anything about my medical history. I pretend I am healthy except for whatever issue I go in for. No one understands. NO ONE!!! not family, not friends, no one!! unless they have it or have a close family member with it. My family is not supportive at all and deny its existence. My son actually says it is a “life style choice!” how insulting and humiliating and unloving and uncaring! So hurtful and so painful. No help from anyone!! Alone, isolated……..After being a high functioning executive in senior management and being known as the energy bunny, the dynamo, the ball of fire, the timex watch that takes a beating and keeps on ticking!! all my friends are gone and so is my career a long time ago. I was at the peak when hit with this, on tv shows, radio programs, keynote speaker, presenting to hundreds of people! I loved my life!! and thought I would always be the energy bunny and never run out of energy!! how cruel this disease is and how cruelly society is treating those suffering with it!!

  3. Linda Danielis November 18, 2011 at 9:12 pm #

    Just a few seconds shows how powerful the message can be with a moving image. I look forward to a greater distribution here in the UK.

  4. cindee November 27, 2011 at 1:13 am #

    Hi,

    I cannot view the trail or. Can you help please? Thank you :-)

    • Admin December 5, 2011 at 7:43 pm #

      Hi Cindee, You could try watching it on Facebook or vimeo if you are having problems.

  5. Patricia January 24, 2012 at 11:48 am #

    Thank you for making this film – hopefully this can be the beginning of ME being taken more seriously. My sister Sue suffers with severe ME and watching this video is like seeing her, needing to wear blindfolds and dark glasses, housebound and often bed-bound, unconscious for huge amounts of time with hemeplaegic migraines. Like these others she has lost years and years of what would have been active and busy life. It is heart-breaking. Please keep the site updated with details of the DVD when we can purchase it.
    Thank you.

  6. Amanda January 25, 2012 at 9:51 am #

    Very very moving, and true!! More needs to be done in UK and Ireland for sufferers of ME FM and CFS.
    At some point we all feel like we cant go on. Not every one makes it through these feelings!!

  7. alex j January 25, 2012 at 7:51 pm #

    I`m glad this was made,though it made me tearful… i`ve suffered from ME for 21 years, the cruelest thing i saw at the start was the nhs`s treatment of ME sufferers, 21 years later, still the cruelest thing i see is the nhs`s behaviour & blind stupidity to ME patients…..i hear cruel stories off my friends often. of how some stupid arrogant doc said or did something that made them angry or their health worse. most dr`s should NOT be practising medicine.

    what you said jan w,is so true “For myself, I learned fairly early on that the best way to stay as well as is possible is to keep away from NHS doctors as much as possible. Their ignorance and satisfaction with that ignorance is astounding and does more harm than good.” you are 200% true. just becuase something isnt understood it doesnt make it “psychological” these stupid drs dont learn from the mistakes of the past, MS was considered “hysterical paralysis” until the 1970`s & some drs still misdiagnose this with depression.dystonia was also treated as psychiatric until recently….these drs that say oh its psychological have NEVER even researched it for an hour…. & the nhs ME clinics the nhs made are just them trying to make it look like they are doing something, i went a few times, i saw 2 docs, i mentioned treatments i`d tried from the last 6 yrs that have been in the press & on tv newsbroadcasts , they`d never heard of them…..they are NOT specialists and have no interest in this illness. if they`d studied it for a few hours in their own time they would of known what i was speaking about.

    we are treated so badly & they keep getting away with it. it has to STOP

  8. Shirley January 26, 2012 at 7:14 pm #

    What a wonderfull film I have had me for twenty years.Nobody would believe me when i told them,how many symptoms i had.Lets hope the Doctors will watch this film and believe us.

  9. Adam Werth February 4, 2012 at 5:18 pm #

    Great to see. I hope that this will reach as wide an audience as possible.

    I have a more mild form of ME. I was a conscientious student and very active when at school. I worked hard and made it to Oxford University, whereupon I had the misfortune to succumb to glandular fever during my second year, which left me with a post-viral fatigue from which I still suffer 11 years later.

    I got my French degree; I then gained my law degree equivalent over 3 years instead of the normal 2, and worked for 2 years as a trainee corporate lawyer in a large international firm. Attitudes towards my problems were not sympathetic. I was not kept on and since then, have done a few temporary roles, mainly in commercial companies in a legal capacity.

    The fight never ends, and the stress of having to mask one’s problems – the fatigue, the depressed state, the accompanying symptoms, as well as having to try as hard as possible to pretend to be an individual with what is perceived as a normal amount of energy – all of this, in itself, is tiring.

    If this crippling disability, this dark shadow that silently takes away all that strength and vitality that its sufferers yearn to rediscover, could be exposed to a wider audience, then there is hope that, in conjunction with further research and the support of believing medical practitioners, understanding will increase, and that those living with this disability will receive the care they deserve.

    Well done for this. I aspire to your achievements is making your voices heard.

  10. Erika January 30, 2013 at 12:49 am #

    Thank you for this. Though at the same time I am so distressed to hear of numerous people having had the same experience I had; that of being treated as a psych patient when your body is screaming for help.

    I ended up in a youth mental hospital for six months when I became ill with M.E. five years ago. The pediatrician I saw decided within moments of seeing ”anti depressants” and ”self harm” on my medical record that it was psychosomatic. The staff at the hospital assured me they believed me, and that I should push for a diagnosis, whilst at the same time telling my parents it was purely down to my mental state.

    Even now when I see professionals the fact I was in a mental health unit and the fact I have a mental illness means that it is a battle to be even considered as suffering from a physical health issue as well… Never mind the battle that then follows, to be taken seriously with a condition which is still regarded as ”laziness” and a lack of will power.

    SO much needs to change.

    I really hope it does. I hope it for me, for my son, for my M.E. friends, and for people I feel love for despite having never met them, because I know what every single day is like for them.

    Come, live a day in my shoes, feel my pain, have my crippling headache, have my swimming head every time I move, have my need to use a walking stick despite being 21 because my balance and strength is too poor… Have that, and the rest, and then we will discuss how M.E. can be cured with mind over matter thinking.

    Again. Thank you for this. I am hopeful it will make a difference.

Trackbacks/Pingbacks

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