Wednesday, September 21, 2011

Voices from the Shadows

“Voices from the Shadows” is a film about severe Myalgic Encephalomyelitis (ME). Natalie Boulton and her filmmaker son Josh Biggs made this film, which focuses on patients in the UK. This is an excellent, excellent film.

The name of Natalie Boulton might be familiar to some of you. Natalie made the book “Lost Voices”, also about severe ME, for InvestinME, the UK organization that sponsors the very best ME conference, annually in London. Richard and Pia Simpson, the guiding lights of InvestinME, do a great deal to further serious clinical and research work in the ME field.

“Voices from the Shadows” is an independently made video development of the book and focus on the consequences of psychiatric and psychosocial misunderstanding about the illness. Because of its sound, editing, pacing and interviews, it carries much more of a wallop.

“Voices from the Shadows” will be premiered at the Mill Valley Film Festival on Saturday, October 8th 2011 where it will followed by a panel discussion featuring Dr. Jose Montoya, the ME clinical researcher from Stanford University, and David Tuller, a medical journalist from the NY Times. Further screenings are being arranged. A trailer of the film can be found on the webpage of the film and is presented here.

I recently watched a finished version of “Voices from the Shadows” to preview it. I had seen several preliminary versions, and was struck by how the balance and pacing of the film was improved each time that I saw a new version.

The film follows various bedbound patients - from early home movies of happy children through the random strike of an “insult” (virus) to later illness severity. Caregivers and patients are interviewed. All interviews are set up and edited for maximum clarity and impact. The timing and fusing of many of the images is first rate. Care was taken in building and constructing every frame. The music is also carefully chosen and interwoven with the images for maximum effect. The music is subtle and persuasive, used with discretion and for visual and emotional emphasis. Particularly striking is the cello music, an instrument whose sound is so compatible with the “aching distress” of the subject. The bottom line is that every single square inch of this film is “considered” - to heighten the difficulties of ME and the obstacles that these patients face. Josh and Natalie have a close and abiding “attachment to the subject” – and it shows.

The film features three true heroes in the public ME world, Dr. Leonard Jason from DePaul University, Dr. Nigel Speight, Consultant pediatrician of Durham University Hospital, and Dr. Malcolm Hooper, the Dean of ME physicians in the UK. Each speaks with a clarity and conviction about the seriousness of ME - and of the longstanding disregard and mistreatment of ME patients. These three people are filmed and interviewed in such a way that their message is delivered with great emotional intensity and clarity.

It is my belief that this film will have a major impact on educating a wider audience about the true nature of ME. Natalie and Josh have made the absolutely correct decision to focus on the very severely ill, and on their medical treatment (or non-treatment). “Voices from the Shadows” depicts “the very bottom” of the illness, what I like to refer to as “the core of the illness”. This was an important choice - as this “bottom” is where the severity of the illness can be most clearly seen –and tested. More clinicians, more researchers should seek access to these patients to find out what really is happening in this illness. Even though the patients are sequestered in rooms, sophisticated, experimental tests can be run on them - involving, blood, urine, saliva and stool samples. The only physician that I know of who engages "the most ill" is Dr. Kenny de Meirleir, who goes into the homes in Norway and other places - and tries to determine what is happening through testing. Perhaps other clinicians do this? I would like to know who they are, as they are important witnesses. Too often clinicians see patients who are “half sick”, patients that can actually get out of their houses into a doctor’s office - so that they do not get an entirely clear or full view. But what about those who cannot move -or cannot be moved? Who sees them?

Josh and Natalie have made a number of exquisite decisions regarding this movie. In the first place it is the right length, a few minutes over an hour long. Within this span of time the story builds through a set of pictures and interviews of patients and physicians. The three principal medical personal reappear throughout the film giving it a great continuity. The pacing and image cutting/building is first rate, riveting the viewer along the path to a catastrophic ending. This film is not for everyone. I do not recommend that patients watch this film. But for others, clinicians and doctors, it is just the ticket to sober them up a bit about this illness.

This film is not a “Professional” movie made by outsiders with a large budget and a large crew. This is a first rate documentary made on a low budget by two people who have access to the “core of the reactor”. There has never been a film like this, and there is apt not to be one again in the near future. This “core terrain” is a difficult place to access, as the illness itself being “stress-related” (“Picking up a glass of water is stress.”) disallows the spectator or helper getting close to the patient. Getting close requires great empathy with the patient’s particular situation, and one has to have great experience being around these ill patients. These two, Josh and Natalie, have a special key to get into the inner sanctum, and they do a marvelous job in a very trying situation.

One quibble that I have about the film is that it does not explain enough the condition of the patients that one sees in the images. For instance, several of these patients are wearing what appear to be headphones. In actuality, these are construction sound blockers. These patients have severe hyperacusis (noise sensitivity) along with photophobia (light sensitivity). Many wear masks twenty-four hours a day. Often they are afraid of sound, as it is incredibly painful to them. Certainly they wish they could listen to music, but it is impossible. Many patients live totally in isolation, in the dark, unable to see, hear or talk. Sometimes a patient has to have a sheet suspended above them, as the contact with the sheet is too painful.

Perhaps this film will do its part in hammering home the true nature of ME. Anyone who looks at this film is going to ask themselves a question. Is this the fatigue illness where patients lounge around or place their heads on the table in class, or drop dishes in the kitchen? Does this look like a “yawning” disease? Or does this depiction of ME indicate a virally (or retrovirally) induced sickness with serious autonomic and immune incapacities? ME is a serious neurological illness that include attacks on all senses – sight, sound, touch, smell, as well as the brain and every other organ in the body. Watch this film and see for yourself.

Too many doctors and too many researchers and too many friends and family do not want to go down the road to look at this illness. There are reasons why so many people turn away from the patients - and leave them abandoned and bereft. The illness is very Medieval and frightening. Most people, most doctors, most researchers, look away. This movie will help people take a good look. This movie will help wake people up.

And yet the film does focus on "those who do not back away" - the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life's normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also - and this film delivers that message. A properly balanced interaction between caregiver and patient - something that is extremely difficult to get right - is depicted with extraordinary sensitivity by these filmmakers.

“Voices from the Shadows” is being shown in a special sneak preview at the IACFS conference in Ottawa, It is scheduled for viewing between 5:30-7 on Thursday September 22nd. The end of the day is the wrong time to show this film. This should be shown at the beginning of each day to get the conference participant's minds focused on their task. This is a breakfast film. The film will disabuse the viewer of any false notions that they might have had about this illness, and replace it with known facts and reality. "Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to end.


  1. Thank you for describing the film in more detail, Chris. I've only seen the trailer. Like you, I think it has the potential to open the minds (and hearts) of health practitioners and researchers who do not see the severely ill.

    I wish it was shown at the start of each day of the IACFS/ME conference as well. Yet I'm glad it is being shown at all. Perhaps an open bar could be set up in the screening room to boost attendance ;)

  2. thank you chris, once again! your comment that this disease is "medieval" - as well as frightening - is so very true! what other disease could leave a severely impacted ME patient who's ultra sensitive to touch (as i am - and now, with chronic shingles)...feeling as though they've been skinned alive - and yet with no real help in effective relief from the pain? it approaches barbaric.

    i'm also glad this film highlighted the caregivers in such a sensitive way. it takes a great deal of love (and a lot of bravery!) to intimately care for the most severely ill.

    i know. my own husband cared for me for nearly 40 yrs - never shying away or holding back - when it was obvious that i was going through periods of apparent "contagion".

    he gave up much of his life to do that...and now at the age of 60, he has been recently diagnosed with ME...and will lose much of the remainder of his life - fighting to maintain whats left of it. we must ration our strength daily - to care for one another.

    it isnt enough to tell our story to the few we come in contact with (and their numbers are dwindling!)...they must see the story on film to grasp the enormity of the suffering!

    thank goodness for the efforts of natalie and her son josh...and pia and richard simpson (investinME).

    regards...jackie nance

  3. Thank you for your review, very thought provoking, lets hope it opens some eyes to see our world :)

  4. Thank you for this review. I want the whole world to watch it -- immediately.

    IMO the key to awareness advocacy is severity. Here is why:

    To judge from your description, this movie will, pardon the vernacular, kick ass.

  5. How many ME sufferers do not have 'caregivers' - How many UK Neuro-ME sufferers have been abandonded by family and friends? Not only abandoned, but those family relationships and friendships have been destroyed at the deepest possible level as the friends and relations believe the medical establishment, and disbelieve their nearest and dearest who are sick, even as the ME sufferers are abused right under the noses of those who are supposed to care, who remain in denial.

    There are many more ME sufferers in the UK who are not in this film, who this film speaks for, who are in total abandonment, and total despair, in hiding from abusive medical treatment, in hiding from the NHS, who are still disbelieved, unknown because of disbelief, truly lost voices in the UK.

  6. Thank you for this review of "Voices from the Shadows." I am hopeful that this film will help people to understand the real illness which is M.E. I am eager to see the film, and I am grateful to Natalie Boulton and Josh Biggs for making it.

    As someone who has suffered with M.E. for 25 years and is now homebound from the illness, I especially appreciate this: "More clinicians, more researchers should seek access to these patients to find out what really is happening in this illness. Even though the patients are sequestered in rooms, sophisticated, experimental tests can be run on them - involving, blood, urine, saliva and stool samples."

    This is true. I have little in common with people who can travel cross country or across the ocean and try all the new treatments. I have been sick so long that my body is now too fragile to consider many of the treatments which are available, and I can't even make it into a local doctor's office, let alone fly across an ocean.

    As always, I appreciate your insight and clear thinking, along with your facility for communicating.

    Patricia Carter

  7. After reading your review, I am eager to see this film. You did a great job of describing what life is like for the very severely ill, and (more unusual) what life is like for their caregivers. I hope that all researchers will start using the new International Consensus Criteria, so that maybe they can get closer to the "core of the illness."

  8. Looking forward to seeing this. Thanks for the review.

  9. Hi,

    I appreciate this post but I would ENCOURAGE people with ME/ CFS to see this film, not so much because they would learn more or something new about ME/ CFS but rather because the better turnout and word-of-mouth an independent film has, the more likely it will be picked up and continued to be shown at various venues and, if we're very lucky, show up on mainstream film screens. So, even if you can't go, please encourage your friends, families, medical professionals, acquaintances to go. And if your local film fest has a contest for audience favorite or other category, vote for this film.

  10. Too often clinicians see patients who are “half sick”, patients that can actually get out of their houses into a doctor’s office - so that they do not get an entirely clear or full view. But what about those who cannot move -or cannot be moved? Who sees them?

    Whole surveys are frequently conducted on these people -- those able to get to the doctor's surgery or the "fatigue clinic" (of which there are a few in the UK, widely scattered, however adequate or otherwise they are). Recently a survey was published in the UK, partly funded by Action for ME, which found that the financial cost of ME for each patient was a third for women of what it was for men -- despite the fact that the illness affects women three to four times as much as men, and often much more severely. This really only reflects the gender pay and work gap, i.e. women had less, financially, to lose in the first place, but certainly does not reflect the level of suffering or personal loss the patients incurred as those most affected were excluded from the survey.

  11. I guess we all struggle breaking through the preconceptions when we talk to people. A film is a much more powerful tool for cutting through this. Great they made it and thanks for reviewing.

    I've found that in conversations concentrating on severity, suddenness and epidemics is the only thing that stands you a chance of cutting through the "tired" preconception. From experience I've found the following get active questions and at least some change of thinking:-

    - mentioning the specific date and day of week that my son caught his illness. Sometimes need to repeat this 2 or 3 times but I almost always get a sensible question that indicates some eye-opening

    - mentioning Lyndonville seems to wrk well also eg. "those poor kids - 40 or 50 that all got it on the same day and still have it now they're in their 40's"

    Just my tip....

    Peter W

  12. Thank you again, PA. Yes, a powerful film.

    Would you or anyone reading this know whether a video or audio recording of the panel discussion following the MVFF showing will become available? Thx.

  13. Sorry, should have looked here first:

    "We should be able to put some of the discussion up on the website. Zoe Elton is the director of programming at Mill Valley who with her team has given us all amazing support in making this film visible."

  14. I think this film is a great undertaking. I'm sure it will help spread the word on how devastating this disease is to sufferers and their families.

    As someone whose 26th anniversary with this disease is soon, I personally can't see this film. It devastates me just to read about the suffering and the continuing existence of CFS-deniers, while people's lives are denied by an indifferent, at best, hostile, at worse, medical establishment.

    Thankfully, some doctors have been enlightened and are doing the right thing. Right now, Drs. Fluge and Malle are in the forefront, and some here are, too.

    I'm betting on the Norwegians medical team and those here in the forefront of scientific research on CFS.

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