Saturday, July 3, 2010

Much Ado About Something

Much Ado About Something! - XMRV and CFS
by imokyrok

Sat Jul 03, 2010 at 08:37:33 AM PDT

In October 2009 The Whittemore Peterson Institute (WPI) published an account of findings in the journal "Science" by Lombardi et al that rapidly spread around the world. WPI claimed to have found that the relatively recently discovered retrovirus XMRV was frequently found in patients diagnosed with Chronic Fatigue Syndrome. Subsequent news releases claimed XMRV was prevalent in  patients with Fibromyalgia and atypical Multiple Sclerosis.

The hope and excitement generated by this research would have to be experienced to be believed! People all over the world, disabled by these difficult to treat illnesses, for once found that more scientists were interested in  researching the cause of CFS and hoped that at the very least the dismissive attitude patients contended with throughout much of the medical profession might at last start to change as people recognised that CFS and Fibromyalgia may well have an organic basis and was not "all in the mind" of it's sufferers.

Since then three studies were published which found no prevalence of XMRV in such patients. The WPI declared that none of these studies had replicated their technique faithfully. Hope started to fade. Then just last week all hell broke loose!

imokyrok's diary :: ::
Out of the blue a relatively unknown Dutch magazine called ORTHO reported on a leaked presentation given at a closed conference in Europe on blood born pathogens by Dr. Harvey Alter from the government agency The National Institues of health (NIH). The highly regarded Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."

At the same time as news of the positive NIH/FDA study was emerging word came that a second government agency, The Centre for Disease Control (CDC) had failed to find any incidence of XMRV at all in their sample,(despite other studies finding it present in about 4% of the general population). Both studies were apparently past the peer review stage and about to be published. The Alter NIH/FDA study in "The Proceedings of the National Academy of Sciences"(PNAS) and the Switzer CDC study in "Retrovirology".

The CFS community and scientists around the world looked forward to having an opportunity to examine these conflicting government studies and hoped to learn much from their publication. It was not to be. First was the news that both studies had been held back from publication. Why would such an event occurr if the studies had already been peer reviewed and accepted scientists wondered. Then the CDC Switzer study was released and published in "Retrovirology" on July 1st. But a spokesperson for the NIH/FDA paper announced the while the FDA-NIH paper has been accepted for publication, the authors had decided to pull it back to conduct additional experiments. Publication will depend on how long it takes to fully address questions. "It's a matter of getting it right" he says.

Blogging scientists expressed their surprise at this uncommon turn of events and the CFS community expressed their heartfelt dismay. To say that the CDC has a less than stellar reputation among the CFS community and the professionals who treat them at the best of times is putting it mildly. The CDC is hugely invested in categorising CFS as a psycho-somatic disorder. Dr. Reeves, one of the studies authors, publicly criticized "Science" for accepting the original WPI Lombardi paper and stated he didn't expect the CDC would be able to find the virus - yet still played a major role in the study; providing the patients, helping to design it and writing the paper. Was such an a priori conclusion conducive to the scientific method?!

The Whittemore Peterson Institute has released a statement claiming that yet again a study purporting to replicate their findings had failed to follow their studies technique. Dr. Vernon, ex CDC researcher and now Scientific Director of The CFIDS Association of America concurred. She found fault with both the cohort use for the study and the techniques used to "replicate" the study. She declared: "So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set." This is a very damning statement coming from a researcher who once worked for one of the studies authors Dr. Reeves.

Conspiracy theories are a frequent occurrence on internet highways. Combine such tendencies with millions of people worldwide desperate for answers and behaviour among government agencies which raises brows in the scientific community and you are pretty much guaranteed an internet frenzy. Until the original paper by Dr. Alter is published in full this is one scientific controversy unlikely to die down any time soon.

Tags: CFS, Chronic Fatigue Syndrome, XMRV, Alter, CDC, NIH (all tags) :: Previous Tag Versions

Friday, July 2, 2010

Sign the XMRV Petition (US only)

Cut/paste the article on the left side of the page into an e-mail to [email protected] .  If you have a bit of extra energy, add a few sentences to the top of the e-mail about why this is important to you.

Thursday, July 1, 2010

Pipe Dreams and Sleep in Fibromyalgia: Why some dream of sleep

Pipe Dreams and Sleep in Fibromyalgia: Why some dream of sleep
Published on June 30, 2010
The alpha-EEG sleep <> anomaly was first described by researchers who used the term alpha-delta sleep to characterize a mixture of alpha and delta waves in a small group of psychiatric <> patients described as having generalized feelings of chronic somatic malaise and fatigue. Other researchers found that fibromyalgia <> patients had an excess of alpha-EEG not just in slow wave sleep, but in all NREM (non-rapid-eye-movement) sleep stages. Further, these same researchers discovered that the alpha-EEG sleep anomaly could be reproduced experimentally in healthy individuals by disrupting stage 4 NREM sleep. Alpha-EEG has been correlated to overnight increases in pain and decreases in energy; and the alpha-EEG anomaly may lead to more arousability during sleep, with resultant unrefreshed sleep.
It is well known that fibromyalgia is a chronic pain syndrome that is often associated with sleep disturbances characterized by subjective complaints of non-restorative sleep. Polysomnographic evidence shows abnormalities in the continuity of sleep: There is reduced sleep efficiency with an increased number of awakenings, reduced slow wave sleep, and the alpha-EEG anomaly in NREM sleep. And while fibromyalgia symptoms may relate to a non-restorative sleep disorder <> associated with such alpha-EEG anomalies, because the alpha-EEG anomaly is seen in healthy individuals when their sleep is disrupted, many experts do not wish to call this EEG finding specific for fibromyalgia, particularly because many fibromyalgia patients suffer primary sleep disorders such as sleep apnea <>or restless leg syndrome.
Another group of researchers examined the relation of alpha wave intrusions to not only fibromyalgia, but also major depression and chronic fatigue syndrome patients, all of whom had a main complaint of chronic fatigue. The alpha-EEG anomaly was found in 26% of the patients, major depression in 67%, chronic fatigue syndrome in 50%, and fibromyalgia in 13%. One-third of the patients had a primary sleep disorder (such as sleep apnea, periodic limb movements, or narcolepsy).
Interestingly, the alpha-EEG anomaly was not significantly correlated with fibromyalgia, chronic fatigue syndrome, major depression <>, or a primary sleep disorder.
*It was, however, much more common in patients with chronic fatigue without major depression.* The researchers concluded that primary sleep disorders are common among patients with chronic fatigue; their existence must be suspected, searched for, and treated. *The alpha-EEG anomaly is not a "marker" for fibromyalgia or chronic fatigue syndrome, but it may contribute to the misery of non-depressed patients with these conditions.*
The dream of an objective marker for fibromyalgia remains elusive, with different research teams <> battling over what sleep anomaly is correlated with what diagnosis.
Wake me when the war is over.

CDC Incompetence Exposed as Govt Agencies find XMRV

 2. CDC Incompetence Exposed As US Government Agencies Find XMRV Virus In Blood Of ME/CFS Patients

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 Chronic Fatigue Sydrome (ME/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."   The CDC has had a problematic year where CFS is concerne d.  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. 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.  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.
Information Release, CFS Central
Related Links:
FDA And NIH Confirm XMRV Findings In ME/CFS Patients
Esme, Press Release from the Netherlands
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express


California bill would limit 'step therapy' in pain treatment


Sunday, June 27, 2010

Invisible: The Movie

Michael Thurston and Rik Carlson's 'Invisible' Brings Voices of CFS Into Sight

(Craig Maupin at    Vermont may be known for its bucolic scenery and small town charm, but a new documentary film, 'Invisible', highlights an often unseen presence in Vermont, the voices and lives affected by chronic fatigue syndrome (CFS).    From 2004-2009, filmmaker Michael Thurston interviewed members of the CFS community in Vermont. The result of those interviews is a complete picture of what makes living with chronic fatigue syndrome singular -- and devastatingly unique -- amongst human experiences.

    A diverse array of voices speak to their experience of awakening one day to the harsh realities of life with CFS: families and finances shattered, physical suffering, and a lack of support from community.    A common theme is the sudden onset of the viral symptoms of CFS. Rik Carlson remembers it as "lightening, a thunderbolt.    I got into bed, and I didn't get out of it, for years."    Julia Bond remembers that "it felt like the flu... I kept thinking I could get over this, but I never could".    Despite the descriptions, more than one sufferer describes not having previous experiences that enable them to describe the physical experience of CFS.

    Through their voices, it becomes clear that the highest price of CFS may not be its physical price.    The support of family, financial safety nets, and access to medical care are guaranteed with some illness, but not with CFS.   Dr. Terry Naumann, who purchased a disability policy before contracting CFS, found that the fine print did not cover CFS.    Another voice, Tiffany Martin, speaks of not having enough resources for food and shelter.

    'Invisible' is not only about people who suffer from CFS.    Supportive clinicians add their experiences of working within a medical community that seems largely disinterested of CFS. Dr. Ken Friedman and Dr. Carol Joy Gardner share their experiences of working with CFS, a disease in which the federal research agencies and his medical colleagues have failed patients.
Family members are also affected by CFS.    Two mothers speak of the effect of CFS on their relationships with their children.     Friendships fall by the wayside as well. Raymonde Perron talks of losing friends who seem "unable to understand" the severe limitations of the illness.

    Dramatic testimony comes from a former physician, Dr. Terry Naumann.    Once healthy and successful physician, Dr. Naumann recalls seeing patients in his former practice who "lost their spouse, their jobs, and everything they want to do" to chronic fatigue syndrome.    Dr. Naumann, now disabled, speaks candidly of the difficulty of "being on the other side of the exam table...especially when you aren't believed."

    'Invisible' is not without hopeful sentiment.     Love for stricken spouses pours through in the testimony of Barbara Carlson and Rex Forehand. Lisa Crean, who has suffered from CFS for over 18 years, believes that "we have to tell our stories and keep telling them".   And Rik Carlson emanates a warm presence throughout the film, advising those with CFS to find support, work together, and accept their limitations.    Tiffany Martin, who describes what it was like to "never really get to be a kid", focuses on a hope of a future someday without CFS.    Pondering a healthy life, a future without CFS, she asks: "What would I do?"   

    'Invisible' may be the title of the film, but the voices in this documentary narrative are clear and cohesive.   The illness that Rik Carlson aptly describes as having a "ridiculous name", is more than an invisible to the national consciousness.    Chronic fatigue syndrome brings indescribable suffering.    Chronic fatigue syndrome is a stealer of dreams, finances, family, and future. Rendering the price of the devastating disease visible is what the film 'Invisible' does very well.

INVISIBLE is available from Exile Films at and