“Voices from the Shadows,” a one-hour documentary about the commonplace abuse and neglect of gravely ill ME patients, including children, by the British government and medical establishment, most notably psychiatrists, and the misportrayal of ME* by the media, premiered on Saturday, October 8, 2011 at the Mill Valley Film Festival.  The movie was produced and directed by Natalie Boulton and Josh Biggs, the mother and brother of a patient who has been severely ill with ME for 20 years.  The wonderful music for the film was written, free of charge as a donation to the ME community, by Emmy-nominated composer David Poore.  The movie is a sequel to the book “Lost Voices from a Hidden Illness” by Natalie.  This was the first time Natalie and Josh produced and directed a film (although Josh is a professional freelance editor and cameraman); it was self-funded and the screening at the prestigious Mill Valley Film Festival was a tremendous achievement for Natalie and Josh. I attempted to summarize the highlights of the movie below for those patients who will not be able to watch it, but there is no way that my written words can do justice to this powerful movie and I urge every who feels up to it to watch the movie.

Currently, two more screenings are scheduled: December 2nd, 2011 in Norwich, UK and December 7th, 2011 in London.  At present, no DVDs of the film are available, but it is available for audiences in Northern America, through a special arrangement with the Mill Valley Film Festival in cooperation with MUBI, for online streaming (but not for download), free of charge, until October 30, 2011.  There is also a trailer for the movie.

The premiere of this movie came at a very difficult time for the patient community, which has recently been dealt one big blow after another. The filmmakers note on their website that the film is not suitable for children with ME. I would add that it might also not be appropriate for those ME patients who are in a particularly tough spot due to special circumstances, such as a recent deterioration of their condition or those patients who feel particularly hopeless these days due to recent developments. It is indeed a hard-hitting film that not everybody will be able to tolerate.

The movie was shown in a small theater at the Smith Rafael Film Center in San Rafael.  All of the 100 seats in the theater were taken, many of which by patients and family members.  The movie tells the stories of ME patients who are at the severe end of the spectrum—Naomi, Lynn Gilderdale, Linda Crowhurst, B. and Sophia Mirza—and how the graded exercise therapy or increased activity programs that were forced on them, as is so often the case with ME patients in the UK, have left them permanently worse or even dead.  These stories are hidden away from the public eye because these patients are too ill to leave the house and because the media refuses to report accurately on the disease.  The filmmakers also interviewed three ME specialists about the current state of ME affairs: Professor Lenny Jason, professor of psychology at DePaul University in Chicago, Dr. Nigel Speight, the most experienced ME consultant pediatrician in the UK and Professor Malcolm Hooper, emeritus professor of medicinal chemistry at the University of Sunderland. Jason, a partially recovered ME patient himself, has been involved in ME research, particularly research of the different case definitions and stigma, for the last twenty years. Hooper has been a staunch advocate for ME patients and a much-needed vocal counterbalance to Professor Wessely whose “research” into, and involvement in, ME has caused never-ending suffering for millions of ME patients and their families around the world, particularly in the UK.  The screening was followed by a panel discussion with Dr. Jose Montoya, associate professor of medicine (infectious diseases) and ME clinician and researcher at Stanford University, David Tuller, lecturer at the Berkeley Graduate School of Journalism and frequent writer about ME in the New York Times and Tina Caskey, an ME patient.

The Film

I wrote a detailed summary of the film. Until Natalie and Josh had the chance to show the film to a broader audience, I decided to delete the summary from this blog entry. I want as many people as possible to watch the movie and I don’t want to risk taking away from it by giving people the chance to just read about it instead of watching it. I may, at some point, add the summary again here.

The Panel

The panel discussion was moderated by Zoe Elton, the Festival Programming Director.  Considering that Zoe doesn’t have ME herself, she was quite knowledgeable about the condition and very supportive of patients.  By bringing Voices from the Shadows to the Mill Valley Film Festival and arranging for, and moderating, the post-screening panel, she has certainly done a great service to the ME community which is indebted to Zoe for her efforts.

Natalie talked a little bit about her daughter who has been very ill with ME for 22 years.  She improves every now and then, but something always happens, like an infection, which causes her to crash and get worse and not return to the previous level.  After the last crash, Natalie became much more interested learning much more about the illness.

Natalie described a tremendous amount of fear she saw in ME doctors and researchers while making the film who were “absolutely terrified” of saying what they knew or believed to be true about ME.  She felt strongly that doctors who got involved in ME were putting their jobs on the line.  She knows of many ME doctors in England who were ordered in front of the GMC and threatened with losing their jobs.

Montoya found the film powerful and said he wishes that it was part of the medical curriculum. According to a Facebook post of Voices from the Shadows a few days after the premiere, the film will be shown soon, with Montoya’s support, at Stanford Medical School.  Montoya stressed that there is no doubt that ME (he and the other panel members called it CFS.) is a real disease in which infections play a trigger role.  Furthermore, patients have no reason to make up this illness.  He has seen venture capitalists, company founders, athletes and gifted students who have a lot to lose (and I would add: did lose) by being this sick with ME.  Montoya said that the film shows how medical arrogance paired with narrow vision and knowledge can be very toxic and can bring more suffering to patients.  Hear, hear!  As he said during his March 3, 2011 talk about ME at Stanford, Montoya’s dream is that the medical profession will one day issue an apology to patients for the way it has treated them.

Montoya thinks that ME is a disease that is solvable within a lifetime.  He and his team strive to find the solution within a ten-year period, ideally a five-year period. He said he will not rest until there is a solution for every ME patient and feels that there is some historical momentum happening right now.  He said that he is in ongoing conversations with the CDC and the NIH and if the same money and attention was spent on ME that are spent on other major diseases, there will be a solution within a five-year period.  Montoya clearly has a lot of compassion for his patients and I sensed that his statement was meant to be encouraging, but I found it incredibly depressing.  There is absolutely no way that ME will get the same amount of research money—not even close—as any of the other major illness.  I hate to be so negative, but we all know that it’s just not going to happen.  More and more, I am coming around to resigning myself to the fact that they are not going to go figure this out in my lifetime (I am 40 years old), but I can always hope for the next generation.

One thing that was fascinating to me was when Montoya talked about the stigma that attaches to doctors who take an interest in ME.  He said that he and his team have the support of the Stanford Medical School dean, but that there are definitely physicians at Stanford that would love to see him and his group fail.  Not only the patients get ostracized, but also the physicians who work in the area.  His mentor whom he didn’t name, but who he said is of world-famous caliber, told him that he would be committing professional suicide if he got involved in ME.  He tried to get Montoya to abandon ME for a whole year.  We all have heard this from other professionals before, e.g., from Dr. Judy Mikovits.  Before Montoya got engaged with ME, he had a very comfortable career and no problem getting papers published.  In order to maintain some credibility, he has stayed involved in his toxoplasmosis work and the difference in the recognition of those two diseases is striking to him.  When he sees toxoplasmosis patients, he has residents and students helping him.  When he sees an ME patient, he has no help whatsoever.  Therefore, he asks his ME patients to involve their primary care provider to help with the patient care regarding sleep, pain medication, etc., so that he can focus on what he can help with the most: infections.  [I had a hard time understanding the following part acoustically, so I hope I got it right.]  Montoya has sent three ME papers for publication.  He said that if he submits a paper on toxoplasmosis, 95% of the time it will be accepted for review in the first go-around.  With the same name on an ME paper, 100% of the time, his first submission will be rejected by medical journals.

Montoya explained that the Stanford ME clinic is not a comprehensive clinic.  They only look at infections in ME.  He mentioned the logistical issues they have been having with about 350 ME patients on the waiting list.  The wait time is now up to four years.  When my internist called Montoya’s office at the end of last year, she was told that the wait time was two years.  She thought that was crazy and didn’t have my name put on the list.  In March of this year, when I decided to have my name added to the waiting list regardless of the long wait, I was told that the wait time was two to three years.  And now it’s four years!  But Montoya also had a piece of good news:  Just two weeks ago, a family made a generous gift funding the addition of a nurse practitioner to Montoya’s team for 3 years starting in January 2012.

I tried to ask Montoya if he still pursuing his retroviral research as part of the extensive pathogen study he and his team are currently conducting and if so, which lab he will use for that, but, unfortunately, I didn’t get a chance.

David Tuller said that chronic fatigue syndrome is “probably the worst disease name that one could come up with” and that has a big impact on how the disease is perceived by editors and the medical establishment.  He feels that name change would really help.  Indeed!  Many of us have long been really disappointed by, sometimes even disgusted with, how the media is portraying ME.  Even though we have mostly, but not totally, moved passed the yuppie-flu label, most media coverage of ME is abysmal.  David clearly has higher journalistic standards, and his coverage has been more balanced and neutral, than that of most other reporters and journalists, which is not too surprising given that he writes for the New York Times.  Although I feel that there is a huge amount of ME territory that he has not tapped yet, his interest and efforts, demonstrated once again by being on this panel, are very much appreciated.  I want to encourage him to branch out with his ME coverage, e.g., by writing about what exactly a day of an ME patient looks like, not just in terms of the physical limitations patients experience, but also with respect to the sheer boundless hostility and disbelief we encounter.  David explained that it is challenging to get information about ME published because editors and reporters are just like everybody else.  They haven’t given much thought to ME or have their doubts, mostly because of the name, chronic fatigue syndrome.  But it seems to him that more medical professionals and researchers have been getting involved in ME in the last two years due to the retroviral connection that was made in 2009.

Final Thoughts

The state of affairs for ME patients, doctors and researchers is dire in this country, the United States.  But the desperation in the United Kingdom takes on a whole different, dark-ages magnitude.  Children are taken away from their loving and caring parents and competent adults who are neither a threat to themselves nor to society are locked up in mental hospitals.  Patients are forced to undergo treatment that makes them permanently worse or even kills them.  The lives of ME patients seem to have no value in the UK.

I grew up in communist East Germany.  I recognize the suppression of human rights when I see it.  A country that robs innocent and sick (!) people of their freedom, health and life is not a democracy.  It’s a police state.

Update October 21, 2011: Voices from the Shadows won the Mill Valley Film Festival Audience Favorite International Documentary Award. Congratulations, Natalie and Josh!