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.

Friday, September 16, 2011

Reno, Nevada -September 15, 2011

I spent a magical evening in Reno, Nevada at the Whittemore Peterson Institute's 7th annual gala fundraiser. This event was attended by about 400 persons and is designed to both celebrate the work of the Institute and to raise money for research and treatment for ME. The evening unfolded over five hours with silent auctions, a cocktail time, dinner, awards and dancing. Music was provided by Nashville singer Suzi Oravec, including her version of "I hope you dance".

The atmosphere was serene and beautiful, with an unusually strong sense of sympathetic and deep community support for the WPI and its tasks. It was a pleasure to observe this.

The work of the WPI, particularly the research of Dr. Judy Mikovits, has lit the fuse on the explosion of interest in ME that has occurred over the past two years.

In the course of accepting the Outstanding Advocate award, I said the following:

I am most honored to accept the WPI's Outstanding Advocate award. In doing so, I pay tribute to the Institute and to the broad and varied forms of advocacy performed by so many dedicated people, each playing his or her part in the fight against neuro-immune illness disease the the WPI was created to combat.

My daughter, Alexis, is seriously ill with Myalgic Encephalomyelitis (better known as ME).

She has been housebound in St. Paul, MN for five years. Because of her deteriorating condition, I have had to move full time from my home in Philadelphia to help her. Our biggest problem is that she has no attending physician. She is unable to travel to an office and we have found no one willing to manage her care at home. I, a sculptor, make medical decisions for my daughter, based on telephone consultations with a web of physicians throughout the U.S, Canada and Europe.

One of the fundamental difficulties in dealing with this illness is this lack of ongoing medical care. Doctors for the most part do not believe the illness is physical or infectious, and in large part are unable or refuse to treat it. Another giant hurdle is the lack of coherent data. The WPI is dedicated to addressing these problems.

Patients with neuro-immune diseases are taken out of the game of life, and there is so little help. They, and their advocates and caretakers alike, are isolated from friends and family, and cut off from the usual avenues for medical care. Lives of patients and families are constrained, limited and indeed shattered by these experiences. An ME sufferer once said to me: "This is not the worst disease but it is among the cruelest."

I am here today because thd WPI is a bastion of hope for my family. I was in Reno in August 2010 for the dedication of the WPI building, and to help my son Peter make a short informational video for the WPI. In an interview for the video, WPI founder and President Annette Whittemore recalled a watershed moment. About the illness, she thought:

"Why isn't anyone doing anything? And you keep asking the question, and then one day you wake up and say, maybe that person is me, maybe that is what I am supposed to be doing."

Out of Annette's moment of revelation, the WPI was born.

In this chaotic world of illness-dictated living, my daughter and I are like an island detached from the mainland of life. The WPI is a new causeway, a bridge bringing less isolation, more cohesive research data and more treatment. Through the tireless work of Dr. Judy Mikovits and Dr. Vincent Lombardi, the WPI represents a new dimension: a new dynamic. The Institute's goal is to bring research data to the study of neuro-immune disease, and to provide a framework where doctors can accumulate and share treatment options.

The question I ask myself is what can I do to help?

Personally I do not believe the government is going to step in and help to find a cure for ME. Instead I think the future for research and treatment is as a private enterprise with private financing, like the March of Dimes. We cannot wait to be rescued. We have to do it ourselves. Increased scientific research and improved clinical medicine costs money.

Over the last two weeks I have contacted everyone that I know and everyone that my daughter, wife and sons know, and asked them to make a small donation to the WPI. In the course of this effort each of these individuals has learned more about my daughter's illness - and about the Institute that is working for a solution. Many people came forward (some with a little persuasion). All these people are new givers. All now know more about neuro-immune disease - and the WPI's work to find treatments that work. All of them will give in the future. In two weeks, I have raised $10,000.

I present my efforts as a demonstration, an example of what one person can do. Stringing a number of these smaller grass roots gifts together can meet achievable and valuable goals - hiring an additional lab technician, making informational videos for outreach, or financing small pilot treatment trials.

I ask that each of your consider acting as I have done to spread the word about the WPI and to increase knowledge of and support for the Institute's critical work. The need is so immediate and so great. Those whose lives have been destroyed by this illness deserve all the help we can muster. There is great urgency.

Thank you.

This modest effort at fundraising involved mostly non-ME related individuals. If some of my readership is interesting in joining this effort, you are most welcome and gifts are still coming in, with my name on the designation. I realize that many people already give to the WPI and in no way do I want to interfere with that, but there might be some who want to give an additional gift and I would welcome this. I also realize that many patients cannot afford to give and support the WPI in other ways, ways that are critically important.