NEW ME/CFS DOCUMENTARY

Directed by British filmmaker Geoffrey Smith for release in 2011, the documentary What About ME? chronicles the plight of ME/CFS patients in Great Britain and the United States.

The trailers (one for the U.K, one for the U.S.) feature interviews with ME/CFS physicians Sarah Myhill in the U.K. and Daniel Peterson in the U.S.; advocates, including biochemist Malcolm Hooper and Whittemore Peterson Institute president Annette Whittemore, who funded the first XMRV study in patients with Chronic Fatigue Syndrome; and patients, among them Whittemore’s daughter, Andrea Whittemore Goad, who talks about the worst aspect of the disease for many patients:  not being believed.

The production values in What About ME? are lush; this is a first-rate operation.  And the trailers convey an eerie, disquieting mood, underlined by the plaintive musical score.  They’re reminiscent of such memorable documentaries as Under Our Skin, Andy Abrahams Wilson’s film about the Lyme disease epidemic; and The Thin Blue Line, Errol Morris’s explosive movie about a man unjustly found guilty of murder.

One exquisitely painful sequence in the U.S. trailer of What About Me? has you gazing at photos of ME/CFS sufferers before they became ill alongside photos of them afterward.  It’s like the before-and-after pics of a beauty makeover—except reversed.  Beneath the placidity of the day-to-day lives of ME/CFS patients—many of whom are bed-bound or house-bound with no good treatments and little hope of getting well—brews the perfect storm. 

The saga makes for great drama even as it’s shattering lives.  On one side are more than a million sick patients in Great Britain and the United States, with few beleaguered physicians willing to treat them and, up until the XMRV study, poorly funded researchers looking into a viral etiology.  On the other is an army of well-funded psychological researchers in government agencies and at universities churning out studies on depression and early childhood trauma in ME/CFS. 

The trailers aren’t all sturm und drang, however.  There are laugh-out-loud moments. One British mother of a daughter sick with ME/CFS explains how she was told by various doctors that the disease doesn’t exist in children but that in any event her daughter would recover within two years.  “That’s quite a common thing they tell parents,” she says matter-of-factly.   “Which is an interesting one because if you don’t believe in something anyway, why do you believe there’s a time limit on it?”

Given that the filmmakers fall squarely on the side of the patients, it’s not surprising that none of the psychological or psychobiosocial proponents—some of whom have been outspoken critics of the Whittemore Peterson Institute XMRV study and have come out with studies refuting its findings—have to date agreed to be interviewed.  As a friend of mine always says:  The more open the marriage, the more private the divorce.

Geoffrey Smith, the film’s director, is best known for his award-winning documentary The English Surgeon, which New York Times critic Manohla Dargis cited as one of her favorite films of 2009.  Smith trailed prominent London neurosurgeon Henry Marsh on his latest mission to bring state-of-the-art surgery to the primitive medical conditions in Ukraine.

Shepherding What About ME? is Susan Douglas, who produced the 2009 documentary Who Killed Nancy? directed by British filmmaker and author Alan G. Parker.  Stabbed to death in the fall of 1978, Nancy Spungen was the girlfriend of Sex Pistols bassist Sid Vicious.  Widely believed—perhaps erroneously—to have been responsible for her murder, Vicious died of a heroin overdose four months after Spungen’s death.

In an email, Douglas said she conceived What About ME? two years ago, after an illuminating conversation with the mother of a young man with ME/CFS, which his mother believes he contracted after crop spraying near his home.  “That got my attention,” Douglas wrote.  “I have since realized what a massive, multi-layered subject it is.”

At present, filming is planned only in the U.K. and U.S. but, Douglas said, “As you know, the nature of the beast can change according to breaking stories, so if there is anything elsewhere and the budget allows we could possibly shoot outside of this premise.”

Douglas’s production company is Double D—and no, it has nothing to do with bra size.  It stands for Digital Documentaries, as the company specializes in online distribution.  “The name,” Douglas concedes, “makes it more memorable.”  Douglas is aiming for a multi-platform release—theatrical, online and television.  “We really intend to get this to the planet, not just the ME community.”

What About Me? Trailer - UK from Double D Productions on Vimeo.

What About Me? Trailer - USA from Double D Productions on Vimeo.

You can find out more about the film here: http://www.whataboutme.biz/

HARD CELL

ME/CFS patients do hard time in

mental wards and foster care

In the fall of 1986, a young British boy named Ean Proctor became ill on a school trip to Wales.  Once home on the Isle of Man, his decline continued, and a neurologist diagnosed him with Myalgic Encephalomyelitis (ME), known in the U.S. as Chronic Fatigue Syndrome (CFS).  There had been an outbreak of the disease in Wales when the boy was visiting.

His case proved severe, and by 1988 12-year-old Ean was confined to a wheelchair and could no longer speak.  Ean’s neurologist suggested the Proctors consult ME/CFS researcher Dr. Simon Wessely but were not told, according to Ean’s father, Robin Proctor, that Wessely was a psychiatrist. 

At the hospital, “Wessely pinched his skin a bit and looked at him from the foot of his bed,” Ean’s mother Barbara Proctor recalls. “Then he took us to another room and told us that Ean didn’t have ME and that children don’t get it.”  When the Proctors told him that they believed he did have the disease, Barbara Proctor says, “Wessely accused us of playing doctor.”

Soon after, in response to a request from lawyers for the child care department, Simon Wessely issued a report [click on the blue type to view the report] obtained by CFS Central in which he attributed Ean’s symptoms to psychogenic causes and explained why he favored placing Ean in a mental ward. “Not withstanding the absence of severe depression or psychoses, Ean has a primary psychological illness causing him to become mute and immobile,” Wessely wrote.  Below Wessely’s signature were the typed words “Approved under Section 12, Mental Health Act, 1983”.  Section 12 enables authorities to consign patients with psychiatric disorders to mental hospitals against their wishes and is referred to colloquially as “sectioning.” 

Despite the Proctors’ ardent protests, Ean ended up in a psych ward for mentally ill children for several months. A doctor and two social workers escorted Ean there by ambulance while the boy cried.  Several years later, according to an interview with Dr. Anne McIntyre, herself an ME/CFS sufferer, Ean said that one of the social workers told him they were taking him away because his parents were letting him die. 

In the ward, “One of the children was screaming, ripping the rooms apart, turning the beds upside down,” Barbara Proctor remembers.  The doctors and nurses, she says, believed Ean was faking his illness and forced him to feed himself, which took hours because his arms were so weak.  He sat in soiled clothing because the nurses wouldn’t take him to the bathroom.

The staff, Barbara Proctor says, observed their interactions with Ean through a one-way mirror and disapproved of them helping their son. “They thought we were making him ill.  Ean was in a wheelchair, he couldn’t speak, his hands were in tight fists.  He was all skin and bones—he looked like something out of Belsen [concentration camp].  How could he do anything?” his mother asks rhetorically.  Ean communicated with his parents by nodding to letters of the alphabet.  To compel him to move, the staff placed Ean facedown in a swimming pool without water wings.  Too weak to dogpaddle, he sank underwater and had to be rescued.  “It was out of the dark ages, the way Ean was treated,” Barbara Proctor laments.

Five months later, after a protracted court battle that nearly bankrupted the Proctors, Ean was finally released into the care of his parents and ME physicians. “We often say if we hadn’t gotten Ean out of there, he wouldn’t have come out alive,” his mother says.  One of his new doctors had treated several children during the Welsh ME/CFS outbreak; Ean also saw a local homeopath. Only 4 to 8 percent of ME/CFS patients recover, but, astonishingly, Ean was one of the lucky ones.  In the reverse order in which they began, his symptoms slowly resolved, until he was well.

Recounting his ordeal on camera with Dr. Anne McIntyre, Ean said he was “very bitter” about the way he was treated.  “Most of the doctors,” he said evenly,  “didn’t really want to understand what the illness was about.”

Wessely's reports 
Ean Proctor declined to be interviewed for this article.  “We’re a small island,” Barbara Proctor explains.  “He doesn’t want anything plastered in the papers again.”  However, Ean gave me written authorization to publish some of his medical records, which his parents obtained legally during their court case.  In a June 3, 1988, letter to a social worker about Ean [click on the blue type to view the letter], Wessely wrote,  “I have absolutely no doubt that the primary problem was psychiatric.  My initial impression was that Ean’s condition was a form of hysteria, in other words, his apparent illness was out of all proportion to the original cause.”

The psychiatrist went on to write, “Ean’s parents are well meaning, but are very over involved in his care, and are certainly seriously over committed to one particular diagnosis.  I have considerable experience in the subject of ‘myalgic encephalomyelitis,’ and am absolutely certain that whatever the status of that diagnosis, it did not apply to Ean.  I feel that Ean needs a long period of rehabilitation, part of which will involve very skilled management of separation from his parents, and the restoring of his independence, and providing an escape from his ‘ill’ world.  For this reason, I support the application made by your department for wardship.”

Two months later, Wessely wrote in another medical report [click on the blue type to read the report], “What is wrong with Ean?  The symptom that is most distressing to Ean, his parents and medical advisers is that Ean is mute…. I have considerable experience of both the post-viral fatigue syndrome and child and adult psychiatry, and would submit that mutism does not, and cannot, occur in a true chronic fatiguing illness, but can, and does occur, in psychological illnesses.” 

Today, Simon Wessely won’t discuss Ean Proctor.  “I’m not going to talk about individual cases,” Wessely says.  “I’m a psychiatrist.  And you’re talking about events that took place 25 years ago now, aren’t you?  You can interpret that as you wish.  It’s not right for me to talk about individual patients.  I’ve read some of the ludicrous conspiracy theories about many many things, and I’d just like to say that I do not recognize myself in any of those things, to be honest with you.”

XMRV study
More than 20 years after Ean Proctor’s sectioning, Wessely remains a major player in ME/CFS research.  Critics cite that as a longtime proponent of the disease as a psychological or biopsychosocial malady in which a person’s negative “illness beliefs” cause physical symptoms, Wessely was not the ideal person to supply the patients for the retroviral XMRV PLoS One study published in January that failed to yield any positives in 187 ME/CFS patients.  An earlier Science study conducted by U.S. researchers found the newly discovered retrovirus in 67 percent of 101 patients, and more sophisticated testing later showed that 98 percent of patients were infected.  (Read “Blood Feud” Part 1 and Part 2 for more information on these studies.)

As for Ean Proctor, he is now 35, engaged to be married and working full time.  An avid mountain biker and hiker, he has defied the odds and remained healthy.  He emerged from his ordeal with his sense of humor intact, the Proctors say.  The old adage that what doesn’t kill you makes you stronger appears true in his case.  According to Barbara Proctor, during his stay in the psychiatric ward, a physician told Ean that he wouldn’t be coming home ever again and would, instead, be sent from the Isle of Man to mainland England to be adopted.  “That is mental cruelty to me,” Barbara Proctor says.  “But Ean only told us that story a few years ago.  I asked him, ‘Why didn’t you tell us then?’  And he said, ‘You had enough to worry about.’ ”

Sophia Mirza

The sectioning of children and adults diagnosed with ME/CFS still occurs in England.  According to Criona Wilson, in 2003 after daughter Sophia Mirza declined treatment of her ME/CFS with cognitive behavioral therapy (CBT) and graduated exercise therapy (GET), the 30-year-old woman was sectioned.  (GET, many ME/CFS physicians believe, can be injurious to patients, and CBT is often of limited benefit.)  A police officer broke down her front door, and a psychiatrist and social worker hauled her away for a two-week stint in a mental ward where, according to her mother, her fragile health deteriorated, and she never recovered.

Mirza died in 2005; her autopsy revealed spinal cord inflammation and kidney failure.  Neurologist Abhijit Chaudhurit told the British news show Meridian Tonight that the autopsy concluded that 75 percent of the sensory cells in Mirza’s spinal cord were significantly abnormal.  “She deserved,” he said, “to have been seen by a neurologist and managed by a multi-disciplinary team rather than be left in a psychiatric hospital.”  Criona Wilson told Sophia’s powerful story on camera.

Ryan Baldwin

Because ME/CFS is still so misunderstood, social services in the U.S. occasionally places children with the disease in foster care while the parents are charged with medical neglect and investigated for factitious disorder by proxy.  Better known by its defunct moniker Munchausen’s by proxy, it’s a severe psychiatric disturbance in which parents—usually mothers—make their children ill as a way to bring attention to themselves. 

Such was the case of North Carolina boy Ryan Baldwin, who was pulled from his home in January 2009 when he was 16, placed in a series of foster homes, made to exercise though it made him sicker and allowed no contact with his parents except in court.  It took nearly a year before his parents were cleared.  Ryan made it home in time for Thanksgiving.  In January, according to a local newspaper account, Ryan told the court that his time in foster care had been “a living hell.”

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This article, “Hard Cell,” is copyright © CFS Central 2010.  All rights reserved.   You may quote up to two paragraphs from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is from CFS Central.

The three documents Ean Proctor authorized me to post on this site are copyright © CFS Central 2010.  You may not reprint these letters or forward them.  Instead, forward CFS Central’s URL to share the material.  

Coming up: An examination of ART (anti-retroviral therapy) in the treatment of HIV and ME/CFS.

ARE YOU SMARTER THAN A 9th GRADER?

In my interviews with Dr. Myra McClure (principal investigator of the first British ME/CFS XMRV study) and Dr. Kate Bishop (principal investigator of the second British ME/CFS XMRV study), both acknowledged that their studies were not replications of Dr. Judy Mikovits's XMRV study.  (See their comments in the BLOOD FEUD: Part 2 post.)  However, most of the media has mislabeled their studies as replications.  
A friend sent this page from his daughter’s ninth-grade biology textbook, Biology, by Stephen Nowicki, published by McDougal Littell, 2008.  According to Nowicki, to be considered a replication:

"Scientists repeating another person’s experiment must be able to follow the procedures exactly and obtain the same results in order for the experiment to be valid. Valid experiments must have

• a testable hypothesis

• a control group and an experimental group

• defined independent and dependent variables

• all other conditions held constant

• repeated trials"

McClure's study didn't use controls, and the methods she used to test for XMRV were different from Mikovits's methods.  While Bishop included controls, like McClure she used different methods to test for the retrovirus.

Why isn't the media picking up on this?  One reason is that many reporters don't have time to read the actual studies, especially in this dried-up journalism climate, where newspapers and magazines are cutting back staff and coverage or going under.  Reporter Nick Davies terms much of today's journalism "churnalism."  Whether from overwork, disinterest or blind trust, some reporters simply scan a study's abstract, plug in perky quotes from the study's authors, and call it a day. 

******

Next week:  "HARD CELL."  ME/CFS patients do hard time in mental wards and foster care.

BLOOD FEUD: Part 2

The Chronic Fatigue Syndrome XMRV controversy heats up with the second British XMRV study, the Dutch study and the unpublished CDC study 

This is Part 2 of an article on the newly discovered retrovirus XMRV in patients with Chronic Fatigue Syndrome (CFS).  Part 1 can be read here.

Last fall, a group of American researchers published a study in Science that offered hope to the 17 million Chronic Fatigue Syndrome (CFS) sufferers worldwide, most of whom are women.  Identifying what may turn out to be an important clue to the illness, the researchers found that 67 percent of 101 CFS patients were infected with the retrovirus XMRV.  More sophisticated testing later showed that 98 percent of patients were infected.

But in January, British XMRV researchers published a study that didn’t find the retrovirus in even one of 186 CFS patients.  Each XMRV camp blamed the other for flaws in methodology, and the exchanges between principal investigator Dr. Judy Mikovits of the U.S. cohort and Dr. Myra McClure of the British cohort quickly became testy.  Many patients were incensed that another of the British study authors, psychiatrist Simon Wessely, has been a 20-year proponent of the disease as a psychological malady.

British study #2

Just when the transatlantic bickering was beginning to abate, a second British CFS study published in Retrovirology on February 15^th didn’t find any firm evidence of XMRV either, sending some patients into a tailspin.  Blogged one:  “If anyone can put a positive spin on this then please post now.  I sense defeat (in myself).  And another 13 yrs (to life) in the wilderness.”

From a group of 170 patients and 395 controls, these British researchers found that 26 exhibited antibodies to XMRV.  The surprise came when the scientists unblinded the study and discovered that 25 of the 26 were controls.  “I was quite shocked,” divulges principal investigator Dr. Kate Bishop, who expected that most of the 25 would be patients.  However, Bishop isn’t convinced that the antibodies were caused by XMRV.  That’s because the antibodies of all but three controls and one patient weren't specific for XMRV and neutralized other viruses as well as XMRV.

While the media has categorized the two British studies as replications, both McClure and Bishop acknowledge that they’re not. 

Bishop's group and the U.S. group have remained civil.  One reason beyond the obvious—that scientists don’t usually insult one another, at least publicly—may be that Mikovits and Dr. Jonathan Kerr—a Retrovirology author who has published papers linking CFS to genetic mutations—share a $1.6 million five-year NIH grant to decipher the cause of CFS.  While the media has categorized the two British studies as replications, both McClure and Bishop acknowledge that they’re not.  For her part, Bishop says one of the reasons her cohort didn’t adhere to the U.S. protocol is that she believes it’s tougher to get a paper published when the experiment is conducted in exactly the same way as the original study.

As for McClure, her study “was never designed to replicate [the U.S.] study or to say, ‘Look how clever we are, and they’re wrong,’ she says.  “It was simply an investigation to see if we in this country could detect this virus in our CFS patients that were homegrown here.”

Critics caution, however, that it’s essential to follow the identical protocol of the original study to validate or disprove it, and if the researchers don’t, they’re in essence comparing apples to oranges.  Interestingly, one of the authors of the second British study was an investigator on a study that failed to replicate the retroviral CFS research of Dr. Elaine DeFreitas at University of Pennsylvania’s Wistar Institute 20 years ago.   Back then, that scientist didn’t follow DeFreitas’s protocol either, and the media mislabeled the study a replication as well.  Given that back story, some patients and long-time researchers have categorized the current crop of British studies as déjà vu all over again.  Others call it a coda to And The Band Played On.

The negative findings in the British studies don’t faze Judy Mikovits, who says other studies due out in the next six months will confirm her study.  She believes that neither group of British researchers could confirm the U.S. findings because neither followed her protocol.

The Aha moment?

But perhaps there is another reason. A week after Bishop’s study came out, researchers at Emory University’s primate lab who injected XMRV into macaques reported that even when the virus was undetectable in the blood, it thrived in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes.  It’s possible the British studies couldn’t find XMRV in the blood because it’s not where the retrovirus likes to hang out. In addition, a German study published June 16 found XMRV in the respiratory tracts of 2 to 3 percent of 168 healthy controls and 10 percent of 161 patients with compromised immune systems, lending credence to the hypothesis that the retrovirus flourishes in areas other than the blood.

One government source says that the yet-unpublished XMRV study by the CDC didn't find the virus—though another government agency has.

More studies in the works

Retrovirologists at the University of Utah, Tufts, Stanford, Cornell and Columbia universities, and in Canada, Sweden, Russia, Spain, Australia and China are at work on XMRV studies.  The German researchers who found no association with XMRV and prostate cancer are now repeating their study using the methods of the U.S. cohort, which did.

The CDC also completed and is due to publish an XMRV study shortly.  One highly placed government source says that the CDC’s study didn’t find the virus—though, the source says, another unnamed government agency has.  In the fall, the CDC and NIH predicted it would take six months for the government to complete its studies, but there have been delays.  At the Chronic Fatigue Syndrome Advisory Committee meeting held at the CDC on May 10, Dr. Jerry Holmberg of the Department of Health and Human Services’s Office of Public Health and Safety apparently tipped his hand when he remarked that part of the holdup was determining the patient-notification policy on the positive XMRV patients from the 25 Whittemore-Peterson CFS samples.

Patients, meanwhile, have been fretting over the CDC’s XMRV study for months because of the agency’s longstanding position that CFS is largely a psychiatric problem.  More than a decade ago, the government agency began watering down the already trifling name of Chronic Fatigue Syndrome to “chronic fatigue,” “fatigue” and “unwellness,” largely due to the philosophy of its longstanding principal investigator, Dr. William Reeves. 

In recent months, the agency seems to be sending out mixed signals about its stance toward CFS.  On the one hand, Reeves was reassigned to a new CDC post in Mental Health Surveillance on February 14.  Some observers read this as a possible shift in the agency’s philosophy.

On the other hand, Dr. Steve Monroe, Reeves’s old boss and the agency’s director of the division of viral and rickettsial disease, where, oddly, most of the CFS psychological research has been carried out, applauds the British research.  “I respect the scientific credentials of the people who did the testing,” says Monroe, a careful speaker with a fondness for qualifiers.  He reasons that since the initial U.S. study found the virus in 67 percent and the first British study didn’t find it at all, “XMRV is not universally present in the majority of CFS patients.  Based on the U.K. results, it’s not universally true that XMRV is associated with the majority—more than half—of CFS patients.  Of course, there could be regional differences.” 

The tipping point

Everyone with a stake in Chronic Fatigue Syndrome has a point of view and something to prove, and it may take a year or more before science yields a verdict on XMRV’s place in the disease.  XMRV may turn out to be the tipping point that changes the game and the players in CFS.  Or it may turn out to be an inconsequential finding or collateral damage from a weakened immune system.  One argument against causality is that HIV and HTLV—the two other known human retroviruses—are transmitted solely through blood or sexual contact, which may be difficult to reconcile with the occurrence of several cluster outbreaks of CFS in the U.S. and England, including an outbreak among schoolchildren in Lyndonville, New York, in the 1980s.

Eminent Tufts University retrovirologist Dr. John Coffin, who’s working on an XMRV replication study, put the uncertainty into perspective at a retrovirology conference in February, reminding scientists of the confusion back in 1983 in the early days of HIV and affirming, “There’s no question that the virus is real and that the virus is infecting some number of people.”  An earthy, measured optimist, which makes him a big hit at conferences, Coffin remarked that it takes a long time to “grind the sausage” and come to a consensus about a big finding like XMRV, and that “although it’s annoying and confusing, it’s really very exciting at the same time.” 

Then again, a February 25 editorial in the British Medical Journal by Drs. Simon Wessely and Myra McClure categorized the research community as “underwhelmed” by the XMRV link to CFS.  The editorial accompanied a small Dutch study that didn’t find XMRV in any of its 32 patient blood samples frozen in 1991 and 1992.  Two of the study’s scientists are psychiatric CFS proponents and have co-authored more than 50 papers on the disease, including the 2008 “Guided self-instructions for people with Chronic Fatigue Syndrome,” which combined cognitive therapy with “email contact.”

Until the dust settles, the uncertainty and media frenzy over whom to believe is bound to continue, prompting Science’s Sam Kean to comment that the search for the cause of CFS, which “seemed to be gaining traction, now seems likely to descend into the same confusion and acrimony that characterized it for years, as a supposed viral link to CFS published just last autumn might be unraveling.”

Longtime patient Pat Fero, who tested positive for XMRV and whose son, Casey, came down with CFS at the age of 9, hopes it does not unravel.  She lived through the fallout from Dr. Elaine DeFreitas’s study 20 years ago and now hopes that the XMRV discovery leads to new treatments, “so that those young adults with CFS can look forward to a better life and experience a childhood they never had.”  Casey died in his sleep from the disease in 2005 at the age of 23.  His autopsy revealed viral myocarditis—an infection of the heart—and old scarring, but doctors never took his health complaints seriously.  “I’m hopeful,” she says wistfully, “that many sick children may soon wake up.”

This article, “Blood Feud,” Part 2 is copyright © CFS Central 2010.  All rights reserved.   You may quote up to two paragraphs from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by from CFS Central.  

Coming up:  CFS patients do hard time in mental wards and foster care.