“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.
[Update: November 16, 2011: 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.]
[Update, June 25, 2013: Natalie felt that it was time for me add my summary of the film again to give people the opportunity to read about it here. So, here it is:]
ME Patients and their Families
Naomi was a bright, talented, creative child who was full of life until she became ill with a cold or flu from which she never recovered. Last year marked the 20th anniversary of her becoming sick. Naomi spent most of that time in her room.
When Naomi first became ill, her parents naively assumed that a hospital stay would afford Naomi the care and attention she needed to recover. They quickly realized how wrong they were. Naomi and her family were met with hostility from almost everybody they encountered in the medical field. The medical “professionals” in the hospital didn’t believe that Naomi was really physically ill and kept asking her why she didn’t want to get better. Even though she could barely walk, Naomi was not allowed to use a wheelchair to get from her bed to the bathroom or to get to other parts of the hospital for tests. Since Naomi couldn’t walk, she was dragged by the hospital staff. The rationale for such abuse was that her illness was just in Naomi’s mind and that giving her aids would merely have served to reinforce Naomi’s faulty thinking that she was actually really ill. Naomi’s parents were told that she would probably die if she wasn’t forced to walk and do other things. Unlike the other children on her hospital ward who were treated in a kind and caring manner, Naomi was treated in a way that made her feel like she had done something wrong. Naomi described herself feeling like a criminal as a result of that treatment. The emotional toll that this had to take on Naomi, who was a child at the time, is immeasurable.
When asked what independence would mean to Naomi, she said she wishes she could go to the bathroom on her own, get out of bed whenever she wants without help or step outside to enjoy the fresh air. In talking about her feelings of loss caused by the severe limitations the illness puts on her, Naomi said, “It’s like a bereavement, but the person who died is yourself and the hopes and dreams that you had.” She often says that if she was making it all up, she would have made up a much better illness than ME. It is a testament to Naomi’s strength that she is still able to joke.
Lynn Gilderdale was struck down by ME after receiving a vaccination at age 14. When Lynn was first diagnosed with ME, she was put on an activity regime that consisted of doing certain amounts of exercise, schoolwork and socializing regardless of how she felt. As a result, Lynn got worse and worse, but it took her parents a while to realize that Lynn deteriorated as a result of the activity regime. When Lynn’s parents sought the help of an ME specialist, they were told that the specialist had never seen such a severe case of ME and that he couldn’t help them. Instead, he referred Lynn to a psychiatrist who administered a truth serum to Lynn without her parents’ consent to find out what was really wrong with Lynn. To the psychiatrist’s surprise, Lynn didn’t reveal any deep dark secrets about what had happened to her because there was nothing to tell; she was really sick. Nevertheless, the psychiatrist diagnosed Lynn with having hysteria. Under the care of psychiatrists, Lynn’s condition continually worsened. She was totally bedridden, her legs were paralyzed and she couldn’t move her head from side to side. She couldn’t swallow anything; she was tube-fed all the time. She had terrible spasms and pain. She couldn’t read or write and she couldn’t speak. She was ill for nearly 17 years.
After Lynn died, the autopsy that was performed by an ME specialist showed that Lynn had ganglionitis, i.e., an infection of dorsal root ganglia of her spine, typical for a neurological illness.
Linda Crowurst became ill 16 years ago when, almost over night, she couldn’t walk anymore. Linda’s husband, Greg, said that, over this time period, their lives have become “tinier and tinier and tinier.”
Greg talked about their struggle, especially during the first few years of Linda’s illness when doctors told them that Linda was just depressed. One doctor told Linda that she was just afraid of standing. Another doctor told her that she merely needed reassurance. It took Linda four years to get her diagnosis of severe ME. Linda painfully came to the realization that, unlike with diseases such as cancer, heart failure or stroke, people have no understanding of ME and do not accept that patients are really sick.
At one point in the movie, Linda tells the audience that she is in absolute agony and has been lying down for hours even though she really needs to go to the toilet, but that she can’t bear to be touched even to be helped and yet, cannot get to the toilet herself.
The parents of B. were so concerned about becoming the target of further harassment by social services that they chose to stay anonymous. B. got ill seven years ago at age eight. She was diagnosed with ME. A child psychiatrist told her that she was not really sick, she just thought she was. When B.’s parents terminated the sessions with the psychiatrist, he involved social services who put a child-in-need plan into place that, without input from a medical professional, determined that B. should receive graded exercise therapy regardless of the dangers of that such “treatment.” The plan also threatened child protection proceedings if B.’s parents didn’t comply with it. As a result of the graded exercise therapy, B. deteriorated rapidly and eventually became wheelchair-bound.
In addition, B.’s parents were forced to take B. to a children’s hospital where she received a diagnosis of depression in addition to ME. Admission into a secure psychiatric ward was suggested, which resulted in social services calling a child protection conference and placing B. on the at-risk register on the grounds of neglect. It was made clear to B.’s parents that court action would be started in order to have B. removed if B. was not hospitalized, so B.’s parents complied. When B. was first admitted to the hospital, she was wheelchair-bound, but she still was able to take care of her basic needs: she could sit upright, read and write. But as a result of the hospital’s activity program, B. quickly deteriorated to the point where she could no longer wash, dress or feed herself. She was also in constant pain when sitting in a wheelchair. She lost so much weight that tube-feeding became necessary. But instead of cutting back on B.’s activities, they were increased. B.’s parents were accused of imposing their belief that the therapy wouldn’t work. During her hospital stay, B. was often left unattended in her wheelchair even though she was in constant pain, unable to sit upright and crying in distress. After five months, B.’s parents were threatened that if B. wouldn’t start to make progress, she would be transferred to a psychiatric unit or placed in foster care.
When B.’s parents finally recruited the help of Dr. Speight, an experienced ME consultant pediatrician, and the Young ME Sufferers Trust, B. was allowed to transfer to another hospital and finally to return home. B.’s name was removed from the at-risk register. At age 15, she is bedridden and paralyzed from the waist down. She needs to lie down all the time and is unable to feed or wash herself. She can only whisper and mostly just nods or shakes her head for her communication.
According to her sister, Sophia Mirza was very outgoing, lively and funny. She was an artist, loved music and traveling and had lots of friends. She did yoga, she ate well and took care of herself.
After Sophia became ill, she had to be in a dark, quiet room with pads over her eyes and plugs in her ears. She couldn’t bear any sound, not even the sound of her own voice. She couldn’t tolerate being touched or having visitors. A psychiatrist who got involved in Sophia’s case by her doctor, told Sophia’s mother, Criona Wilson, that Sophia needed to get better within six months or he would section her in the mental hospital. When Criona asked how much better sectioning is going to make Sophia, the psychiatrist responded that this was none of her business, but for the courts to decide.
One day, the psychiatrist and a social worker came to Sophia’s home and when Criona didn’t let them in, they told her that they would return with the police. Criona had asked Sophia what she wanted her to do in that case. Sophia was terrified of having to go a mental hospital because she knew that the treatment she would receive there would make her condition, which was already severe, much worse. She said, “I do not want to be an example of what a mental hospital can do to an ME patient.” A few weeks later, the psychiatrist and the social worker returned with the police who smashed the front door down, went into Sophia’s room and turned the light on (which she hadn’t seen in two years because it made her so sick). Sophia was begging and pleading with them to send her to an ME clinic instead of a mental hospital. She desperately tried to tell them that she had ME and not a mental illness and that a stay at a mental hospital would make her condition so much worse. Nevertheless, Sophia was removed from her home and incarcerated in a locked room in a locked ward in a mental hospital even though a solicitor determined that she was competent.
Criona commenced legal proceedings and a tribunal was held 13 days later. Sophia was released from the hospital, but it was too late. She was sicker than ever before and never recovered from her hospital stay. Sophia died at age 32. The autopsy showed inflammation in 75% of Sophia’s dorsal root ganglia and it was ruled that Sophia’s death was the direct result of having ME.
Jason emphasized that there is a consensus in the scientific field, based on many studies, that ME patients have functional limitations that are as severe and debilitating as those of any other major illness, such as cancer, hearth disease or AIDS and yet, many medical professionals do not believe ME patients are really sick, label them as malingerers and do not provide appropriate care for them. As a result, patients do not only have to live with the trauma of the illness, but also with the trauma of being stigmatized by the healthcare system, family members and co-workers. Many patients have given up trying to obtain appropriate care.
Giving this illness the trivializing name chronic fatigue syndrome, as the CDC has done, is, Jason said, like calling emphysema or bronchitis chronic cough syndrome. A name that focuses on fatigue, which is not even the cardinal feature in ME, minimizes the severity of the illness because fatigue is so common in the general population.
Jason pointed out that a correct diagnosis is crucial both for clinicians and for scientists. The symptoms of people with major depressive disorder, which have some overlap with ME symptoms, improve with exercise while the symptoms of people with ME worsen with exercise. Therefore, the wrong diagnosis puts ME patients at serious risk for permanent damage to their health because often exercise or increased activity is prescribed as a result of diagnosis of depression. In addition, ME studies that use the wrong patient cohort or a mixed patient cohort, i.e., patients with ME and patients with major depressive disorder, will lead to invalid results and prevent researchers from identifying biomarkers and possibly finding the cause, appropriate treatments or even cure for ME. ME researchers frequently use the very broad Oxford or Fukuda criteria to select study subjects. Those criteria are so broad that they also cover people with other illnesses, such as major depressive disorder. Jason believes that the Canadian Consensus Criteria should be used (The film was made before the International Consensus Criteria were published in August of this year.).
All in all, Jason said, the situation for ME patients is grave. He called it a national catastrophe.
Hooper started out by saying that ME is, without a doubt, a complex, chronic, multi-system illness and neither a psychiatric illness nor an illness associated with mental or behavioral disorders. It is an inflammatory disease of the brain and the spinal cord associated with muscle pain. He remembered that ME used to be called atypical polio, which makes sense because some patients experience polio-like paralysis. Hooper also pointed out the similarities to MS, which is another neurological illness
ME was categorized by the WHO as a neurological illness in 1969. Hooper blamed the relentless reclassification attempts since the 70s and 80s as a psychological or psychiatric illness for the neglect and abuse patients have been experiencing. Astutely, he said that simply dropping either the word “chronic” or the word “syndrome” changes the whole understanding of the disease and creates the basis for the reclassification of the disease from neurological one to a mental or behavioral one.
Like Jason, Hooper sees one of the biggest problems in how the illness is being defined. He agrees with Jason that the Canadian Criteria are the very best criteria for diagnosing and understanding the illness. They were established as a clinical consensus by clinicians from North America and Europe who are engaging with the illness on a daily basis. They reflect thousands of hours of experience in patient care, monitoring and testing. It is very disconcerting to Hooper that the Canadian Criteria are not being adopted.
Hooper categorically disagreed with those that say that patients don’t die from ME. He said that that is simply not true. He said that the Medical Research Council (MRC) in the UK is responsible for the treatment of the illness a mental and behavioral illness, an approach that he said completely failed because the MRC has refused to fund any research whatsoever into the biological cause of the illness. He called it a destructive and deceptive policy.
Speight pointed out that ME patients have to come to terms with feelings of tremendous loss. They often have over 20 symptoms, but that the biggest problem of them all is the disbelief on the part of the medical profession in the reality of ME as a physical illness when standard tests come back negative. Psychiatrists are eagerly filling that void and expanding their territory into this organic disease. In Speight’s view, the current situation, the disbelief in ME as an organic illness and the hijacking of it by psychiatrists, is getting worse rather than better.
Although ME spans a wide spectrum of severity, Speight stressed that even the mildest cases deserve attention because it is imperative that those mildly affected patients are given the correct advice in order to avoid becoming worse. The more severely affected cases are being treated the worst: abandoned by specialists and denied any benefits. Those are the ones that Speight points to as proof that ME cannot be explained away with psychiatric theories.
Speight feels that the reason for the outright rejection of ME by organic medicine is medical education. ME is either not taught at all or taught to be a somatization disorder. Doctors who do believe that ME is a real illness typically and mistakenly accept the efficacy of graded exercise therapy, which puts their mildly or moderately affected patients at risk of becoming a severe case. When exercise doesn’t work, those doctors question the ME diagnosis altogether, refer the patients to psychiatrists, increase the amount of exercise, abandon the patients or blame them, which Speight likened to World War One generals blaming their soldiers for cowardice when the generals’ plan fails. In some childhood ME cases, the label Munchhausen Syndrome by Proxy is attached, meaning the parents make the child sick to fulfill their own pathological needs, and care proceedings are initiated. Parents are threatened with the removal of their children from the family home and the placement of the children in foster care. Of course, the children do not improve when placed with foster parents. Speight calls these actions child abuse by professionals. Another big problem Speight sees is that doctors who are appropriately treating ME patients are at risk of having complaints made about them to the General Medical Council (GMC), which he called a new Stalinism.
Speight called for the medical profession to accept ME as a physical illness, to do more research into the biological causes, to downgrade the emphasis on psychiatry and to improve medical education about ME. He sounded very sure when he said that if this condition hadn’t been hijacked by psychiatry for 30 to 40 years, the causes for it would have been found by now.
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.
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!*ME, standing for myalgic encephalomyelitis, is the term frequently used in the UK for this disease. It is commonly referred to in the US as CFS, chronic fatigue syndrome, which I and many in the patient community consider a mislabeling and derogatory term.