Voices from the Shadows

[Daisymay]

This is being posted on behalf of Natalie Boulton & Josh Biggs, director/producers of Voices from the Shadows:


Voices from the Shadows

Voices from the Shadows is a deeply moving and compassionate film that helps others understand the daily reality for severe ME sufferers: the disbelief, trivialisation, ignorance and complacent self-assurance of ill-informed professions causing such a devastating impact on ill patients.

It is an act of witness by two people closely involved, and shows how five British families have struggled against the odds, with supporting evidence by three ME specialists who expose the deception and confusion which has led to tragedy.

This is a valuable tool everyone can use to show to family, friends, co-workers, doctors, healthcare workers and MPs, to help others understand what they are living with and encourage support in bringing about change.

"Voices" won the Audience Best International Documentary Award at the California Mill Valley film festival in 2011, where it was given full support by Dr Montoya from Stanford Medical school.

The trailer can be viewed at http://www.youtube.com/watch?v=fxZG4QVkO2k

This film is now available on PAL DVDs to purchase from the USA and UK as well as many other countries - from the website:

http://voicesfromtheshadowsfilm.co.uk/shop-dvds/

These PAL DVDs can be viewed on computers and on some multi-format DVD players in the USA and Canada, and on both DVD players and computers in Europe, Australia and NZ.

Please help by distributing this email to friends, family, colleagues and ME charities.

Reviews of the film:

"Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced." Prof. Leonard Jason

"I think the film was powerful and it should be actually part of medical curricula in medical schools in the US (it) shows how medical arrogance combined with narrow vision knowledge can be so toxic and can bring more suffering to a group of patients that are already suffering at deep levels." Dr Montoya Stanford Medical School.

"Voices from the Shadows is a poignant documentary, which unveils the reality of people with severe ME/CFS and their carers We hope that this type of initiative helps to promote a revision of preconceptions about ME/CFS in health researchers and professionals, and to bring renewed interest for research in this field, particularly in light of mounting biomedical research evidence in ME/CFS." Dr Eliana Lacerda CFS/ME Observatory at the London School of Hygiene & Tropical Medicine.

Natalie Boulton & Josh Biggs

 

[cfidsurfer]

Thanks for posting. I just bout a USA copy!

 

[Daisymay]

Great cfidsurfer, it is a very powerful documentary. Just to add...... I don't think it is adviable for ME children to watch.

 

[Googsta]

I was wondering if someone could maybe mention where the money goes as I know some people are burning copies for others.

They mean no harm, they think they are helping out fellow sufferer's but it is short sighted of anyone to this, akin to shooting ourselves in the foot.

Thanks

 

[Joshb]

Hi Googsta

To be very brief. This project has been paid for by mum and dad at their own expense. Mum has worked on the project unpaid for 5 years and continues to work on it every day.

Making a one hour documentary costs tens of thousands of pounds - too much to even consider trying to pay for it from the sales of the dvds! The money from sales mostly goes towards the manufacturing of the disks, suitable for giving to professionals, and some of the associated costs of getting the film out into the world.

We also need it to pay for some of the work involved in having a subtitled version made - which desperate people in other countries have asked us to make. We have to cover all the costs ourselves and then hope to get enough back to pay for making the dvds - if people buy them!! We are also working on a new development for the film which will help with medical student training.

The alternative would be to ask people for donations to make the above possible. We haven't done this because we didn't want to compete with donations for ME research, or abandon further projects.

Many people have been fantastically appreciative in their support; buying copies to give to key people and making amazing efforts to organise screenings and distribute DVDs. While I'm sure its not being done maliciously or with bad feeling, or any harm intended, the financial effect of people pirating the DVDs is only hindering and at worst jeopardising our efforts.

by the way I'm afraid i don't keep up with the forums very often so if you do have questions etc please drop either of us a message on the Facebook page or via the contact form on the website which we both pick up.
Thanks
Josh

 

[Mya Symons]

Hi, DaisyMay. Thank you for the link to this movie. I tried to purchase a DVD from the United States with my Visa debit card, but the system won't let me. I have over $1,500 in my account. I am not sure what is going on. I will try again later.

 

[Daisymay]

Hope the system let's you buy one later Mya, if not you could perhaps try and contact them via the Voices website and see if they can help.

 

[Daisymay]

Josh thanks for the info and thanks a million to you and your parents for all your work and all the money you have ploughed into this. It is an outstanding film, just wish we could get it seen on mainstream TV, that would really open people's eyes big time.
BW Daisymay

 

[Purple]

Josh thanks for the info and thanks a million to you and your parents for all your work and all the money you have ploughed into this. It is an outstanding film, just wish we could get it seen on mainstream TV, that would really open people's eyes big time.
BW Daisymay

Absolutely agree that it's an outstanding film.

 

[Mya Symons]

Hope the system let's you buy one later Mya, if not you could perhaps try and contact them via the Voices website and see if they can help.

I just opened a Pay Pal account and I will try that first. If that doesn't work, I will try to contact them. Thanks for posting this. I think this will be a great video for those that don't understand ME/CFIDS (like not so understanding relatives and friends).

 

[Googsta]

I was wondering if someone could maybe mention where the money goes as I know some people are burning copies for others.

They mean no harm, they think they are helping out fellow sufferer's but it is short sighted of anyone to this, akin to shooting ourselves in the foot.

Thanks

Hi Googsta

To be very brief. This project has been paid for by mum and dad at their own expense. Mum has worked on the project unpaid for 5 years and continues to work on it every day.

Making a one hour documentary costs tens of thousands of pounds - too much to even consider trying to pay for it from the sales of the dvds! The money from sales mostly goes towards the manufacturing of the disks, suitable for giving to professionals, and some of the associated costs of getting the film out into the world.

We also need it to pay for some of the work involved in having a subtitled version made - which desperate people in other countries have asked us to make. We have to cover all the costs ourselves and then hope to get enough back to pay for making the dvds - if people buy them!! We are also working on a new development for the film which will help with medical student training.

The alternative would be to ask people for donations to make the above possible. We haven't done this because we didn't want to compete with donations for ME research, or abandon further projects.

Many people have been fantastically appreciative in their support; buying copies to give to key people and making amazing efforts to organise screenings and distribute DVDs. While I'm sure its not being done maliciously or with bad feeling, or any harm intended, the financial effect of people pirating the DVDs is only hindering and at worst jeopardising our efforts.

by the way I'm afraid i don't keep up with the forums very often so if you do have questions etc please drop either of us a message on the Facebook page or via the contact form on the website which we both pick up.
Thanks
Josh

THANKYOU to everyone involved & also for providing that info

 

[taniaaust1]

The alternative would be to ask people for donations to make the above possible. We haven't done this because we didn't want to compete with donations for ME research, or abandon further projects.

I dont think you should feel like you would be taking away from other things by asking for donations as what you are doing and trying to do there, IS JUST AS IMPORTANT... without good advocacy for the illness in various ways.. less studies etc will be done, less doctors will get interest in the illness etc.

Dont underestimate the value of what you are doing.

Thanks for what you are doing for the ME community.

 

[Don Quichotte]

Don't underestimate the value of what you are doing.

I agree with that.

I have seen this movie three times-

As a physician
As a mother
And as a patient

My husband also saw it with me (we saw it on MUBY).

It was hard to see and comprehend the young lives which have been violently disrupted not only by the illness, but much more by those who were supposed to help. Those who were unworthy of the trust you put in them.
It was hard to see how the refusal to accept the unreasonable psychological explanations for their illness, was seen as a mental illness in itself. It was hard to see the consequences of this approach. The way some of them were forced to do what they knew was wrong for them and made them significantly worse, the way they were sectioned to mental hospitals; The way they died suffering like prisoners of war. I highly recommend this movie to anyone who wants to understand what modern medicine can do if we are not cautious and do not use our clinical skills with true humility and wisdom.

I am so sorry that you have had to go through this. But, I think you have managed to turn your suffering into a constructive/important criticism. Something that I have been trying to do myself, but so far with much less success. You have managed to show with unquestionable credibility, the unbearable physical and emotional burden of the misfortune of having an "unexplained illness" in modern western society.

It is hard to believe that modern medicine-the most compassionate and caring profession can do that, can become a totalitarian regimen, but my own experience has unfortunately taught me that this can be so. Physicians can be unreasonable, even hostile to patients whose diseases do not fit their paradigms.

"It didn't have to make sense, because they were the doctors and nobody questioned them".
I think it is time, that we, the medical profession, will start to listen to those silent voices and start asking some serious questions.

 

[Snow Leopard]

There is an interesting review (by an ME sufferer/film reviewer) here:

http://blogs.suntimes.com/foreignc/2012/02/life-in-the-shadows.html

 

[Enid]

Good to see Snow Leopard (that is the talking about) - quite indescribable at the severe stage and the history in the UK of psychiatric ignorance and "treatment" utterly shameful. Tragic to see knowing but having somehow pulled back a little.

(please moderate out if you think fit - may the doubters all get a hefty dose of ME).

 

[SilverbladeTE]

Hi Googsta

To be very brief. This project has been paid for by mum and dad at their own expense. Mum has worked on the project unpaid for 5 years and continues to work on it every day.

Making a one hour documentary costs tens of thousands of pounds - too much to even consider trying to pay for it from the sales of the dvds! The money from sales mostly goes towards the manufacturing of the disks, suitable for giving to professionals, and some of the associated costs of getting the film out into the world.

We also need it to pay for some of the work involved in having a subtitled version made - which desperate people in other countries have asked us to make. We have to cover all the costs ourselves and then hope to get enough back to pay for making the dvds - if people buy them!! We are also working on a new development for the film which will help with medical student training.

The alternative would be to ask people for donations to make the above possible. We haven't done this because we didn't want to compete with donations for ME research, or abandon further projects.

Many people have been fantastically appreciative in their support; buying copies to give to key people and making amazing efforts to organise screenings and distribute DVDs. While I'm sure its not being done maliciously or with bad feeling, or any harm intended, the financial effect of people pirating the DVDs is only hindering and at worst jeopardising our efforts.

by the way I'm afraid i don't keep up with the forums very often so if you do have questions etc please drop either of us a message on the Facebook page or via the contact form on the website which we both pick up.
Thanks
Josh

This has GOT to be made an item the public can see for free, or the advocacy will have less effect, sorry
Please see how documentaries on Gulf War Syndrome and other issues, made freely available on Google video, youtube etc, have helped by raising the PUBLIC''S awarness.

Ordinary people will almost never buy such videos, thereby, have little understanding
"A picture is worth a thousand words"
And it's miles easier to send a link to a journalist etc, than a DVD

Please, PLEASE try and do a fund raiser to allow a public hosting or approach Google or Youtube or some such about this
I will very happily donate for such a thing

Also, see also how crowd sourcing has funded the start up of many new business and major computer games (which cost millions to start up, it's not a joke/infantile to mention such)

Well done, thank you!
Such work is, alas, of more import than any of the small-time research efforts, because our problems are NOT about science, it's about bigotry and deliberate, cold-blooded mass murder and monstrous abuse of due processes of law and public health, for profit.

 

[Enid]

Short answer to Josh is a big thank you and all those who participated revealing the real ME. for what it is - and yes we are in various ways getting there now. The suffering may move those with heart (obviously not the mumbo jumbo psyches) into science and research and medical discoveries (and many do) unravelling the real basis of this disease, discovering and treating pathologies..

I personally look forward to the end of the United Kingdom's psychiatric so called profession. Yep and they will not silence me as they and their cohorts have tried with others in the past. This disgrace to real medicine (4 Docs in my family agree).

 

[Verity]

Thank you so much for making this film.
Last week I convinced my GP to borrow my copy to watch! Hope he will learn a thing or two from it! He needs it badly lol
My family won't watch it cause they don't believe in M.E. as a physical thing... how ridiculous. Wish they'd watch it to open their minds!

Thanks again!

 

[Bob]

Voices from the Shadows is available to watch online at the moment for $2.99
http://mubi.com/films/voices-from-the-shadows

The video site also has a 14 day free trial at the moment.
(It says you can watch all of their films for free during the trial period.)

 

[SunnyInside]

As you all say, its well worth watching, and too think should be readily available for Everyone to see, it will raise more awareness that way.
It also make me realise how lucky I am, not being that ill with it, certainly raised my awareness.
Big thankyou to all involved in it. x