Wednesday, June 30, 2010


On April 15, 2010, a government source told CFS Central that a soon-to-be-published CDC study hadn’t found the retrovirus XMRV in CFS patients but that another government agency had.  The agency that found XMRV in CFS patients—and up to 7 percent of the blood supply—turned out to be two agencies: the National Institutes of Health (NIH) and the FDA, as was leaked last week

Today the Wall Street Journal is reporting that the CDC paper, which was accepted at the journal Retrovirology, has been put on hold, as has the FDA/NIH paper, which was accepted at the Proceedings of the National Academy of Sciences.  The reason?  According to the Wall Street Journal, it’s because “senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions.”  In addition, the Wall Street Journal also reported that a spokesman for the Department of Health and Human Services said the research was being reviewed to ensure “accuracy” and “relevancy of the scientific information.”

Some insiders say that this is a face-saving move to come up with a plausible explanation for the disparate XMRV findings and to present a united front so as not to confuse the public about blood safety.

The CDC has had a problematic year where CFS is concerned.  The long-time CDC principal investigator for CFS research Dr. William Reeves was reassigned on February 14, which many critics believe was because the scientist was embarrassing the agency.  After Dr. Judy Mikovits's paper linking XMRV to Chronic Fatigue Syndrome was published in Science in October, Reeves told the New York Times:  “We and others are looking at our own specimens and trying to confirm it.  If we validate it, great.  My expectation is that we will not.”  Reeves also told the Times that the culprits behind CFS were more likely sexual and emotional abuse and an inability to handle stress.

Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agency’s CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and “metabolic strain,” as Reeves himself explained in a 2009 paper.  In a 2008 CDC paper, “An extended concept of altered self,” Dr. Jim Jones argued that illnesses such as CFS are “illness states” rather than “true diseases.”  A CDC paper from 2006 on coping styles found CFS patients guilty of “maladaptive coping” and “escape-avoiding behavior.” 

If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem.  Now that two other government agencies have found XMRV and other studies due out this summer have also found the retrovirus, critics point out that the CDC is in a no-win situation and beginning to look like the odd man out.

Monday, June 28, 2010


One concern during antiretroviral treatment is drug resistance. That’s why HIV patients are usually on a three-drug cocktail, known as HAART, which stands for Highly Active Antiretroviral Therapy.  HIV is a lively, rapidly replicating retrovirus, leading to a high mutation rate:  As in most arenas, mistakes occur more commonly in haste.  The more mutations, the greater the risk of a favorable mutation popping up that confers drug resistance.

But XMRV replicates slowly and doesn’t appear to mutate much.  If XMRV proves to be the cause of ME/CFS and patients begin antiretroviral therapy, will patients still require a triple cocktail?

At present, only three FDA-approved HIV drugs have been shown to have efficacy against XMRV in vitro (in the test tube): AZT, tenofovir and raltegravir.  One possible way to determine whether CFS patients need all three would be for researchers to conduct retrospective longitudinal studies.  Examining the banked blood of HIV patients who’ve been followed for years, they would locate the positive XMRV samples.

Even if HIV patients aren’t infected with XMRV in large numbers, there may be a background rate of 3 to 7 percent, as per the findings of the soon-to-be-published FDA and NIH study, or the more conservative 3.7 percent background rate found in a study by Dr. Judy Mikovits, published in Science in October.

While the HIV patients have been on any one of the three antiretrovirals that appear to be effective for XMRV, has XMRV mutated?  If XMRV hasn’t mutated over several years, a single drug might be sufficient.  If it has mutated, researchers could examine the mutation rates of patients on two of the drugs that appear to be active against XMRV, and so on.

It would also be helpful to examine the banked blood of ME/CFS patients who’ve been followed over many years to determine the natural XMRV mutation rate over time. Researchers may also discover that some strains of XMRV are less likely to mutate than others.

It would be risky for patients to go on monotherapy until more is known about drug resistance and XMRV.  Because once you developed resistance, the drug is essentially useless.

Thursday, June 24, 2010


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.”

Monday, June 21, 2010


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.”


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.