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Co-Cure Weekly Digest of research and medical posts only - 8 Jan 2007 to 15 Jan 2007

There are 8 messages in this issue.

Topics of the week:
        1. res: New therapy for CFS to be tested at Stanford

        2. RES: Abstract of article by Montoya et al  on valganciclovir, published in Journal of Clinical Virology, December 2006

        3. RES,NOTICE:  The Times reports on new US drug trial involving valganciclovir

        4. RES: Skin biopsy findings: Implications for the  pathophysiology of fibromyalgia

        5. RES: Efficacy of Farabloc as an analgesic in primary  fibromyalgia

        6. RES: Increased cancer risk in patients referred to hospital with suspected fibromyalgia

        7. RES: Musculoskeletal Pain in Malaysia: A COPCORD Survey

        8. MED: Medically Unexplained Physical Symptoms to be posted

            Date:    Tue, 9 Jan 2007 04:27:54 +0100
            From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
            Subject: res: New therapy for CFS to be tested at Stanford
           >>> Help ME Circle <<<
           >>> 9 January 2007 <<<
            This is a primitive version of Help ME Circle;
            only sent to Co-Cure, because I lost all my addresses.
            I have 2 drives in my PC: one with all my data:
            my whole medical archive, all my programs with serial numbers,
            all my downloads, Eudora with all addresses, etc, etc,
            I use my second drive for back-up:
            every night with Norton Ghost and also DataKeeper, which
            stores a back-up with every change on my PC, because
            I'm very afraid to loose my data.
            Some weeks ago I had a PC crash and installed XP again.
            When I was finished I saw that my back-up drive was EMPTY !
            The cause: a confluence of events - too complicated to explain.
            Anyhow I'm really seized by panic.
            I'm emailing, phoning and googling for weeks.
            Most people assure me that the data can be find back
            with a `good recovery program.
            Yesterday I installed a demo version of a rather expensive
            recovery program - it is busy now for 24 hours and it will take
            another 24 hours till it has read the whole drive. Then I can see if
            I can find back, what I need.
            And to-day I'm very lucky, because a friend sent me the same
            program with a serial number as a present. I will install this
            program, when the demo is ready.
            Please keep your fingers crossed for me.
            Public release date: 8-Jan-2007
            Contact: Louis Bergeron
            Stanford University Medical Center
            New therapy for chronic fatigue syndrome to be tested at Stanford
            STANFORD, Calif. -- A preliminary study suggests
            there may be hope in the offing for some
            sufferers of chronic fatigue syndrome with a new
            therapy being tested by researchers at the
            Stanford University School of Medicine.
            Joseph Montoya, MD, associate professor of
            (infectious diseases), and postdoctoral scholar
            Andreas Kogelnik, MD, PhD, have used the drug
            valganciclovir - an antiviral often used in
            treating diseases caused by human herpes viruses
            - to treat a small number of CFS patients.
            The researchers said they treated 25 patients
            during the last three years, 21 of whom responded
            with significant improvement that was sustained
            even after going off the medication at the end of
            the treatment regimen, which usually lasts six
            months. The first patient has now been off the
            drug for almost three years and has had no
            relapses. A paper describing the first dozen
            patients Montoya and Kogelnik treated with the
            drug was published in the December issue of Journal of Clinical Virology.
            "This study is small and preliminary, but
            potentially very important," said Anthony
            Komaroff, MD, professor of medicine at Harvard
            Medical School, who was not involved in the
            study. "If a randomized trial confirmed the value
            of this therapy for patients like the ones
            studied here, it would be an important landmark
            in the treatment of this illness."
            Montoya has received a $1.3 million grant from
            Roche Pharmaceutical, which manufactures the drug
            under the brand name Valcyte, to conduct a
            randomized, placebo-controlled, double-blind
            study set to begin this quarter at Stanford. The
            study will assess the effectiveness of the drug
            in treating a subset of CFS patients.
            Montoya is speaking about his efforts at the
            biannual meeting of the International Association
            for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.
            Chronic fatigue syndrome has baffled doctors and
            researchers for decades, because aside from
            debilitating fatigue, it lacks consistent
            symptoms. Although many genetic, infectious,
            psychiatric and environmental factors have been
            proposed as possible causes, none has been nailed
            down. It was often derided as "yuppie flu," since
            it seemed to occur frequently in young
            professionals, though the Centers for Disease
            Control and Prevention says it's most common in
            the middle-aged. But to those suffering from it,
            CFS is all too real and its effects are
            devastating, reducing once-vigorous individuals
            to the ranks of the bedridden, with an
            all-encompassing, painful and sleep-depriving fatigue.
            More than 1 million Americans suffer from the
            disorder, according to the CDC. The disease often
            begins with what appears to be routine flulike
            symptoms, but then fails to subside completely -
            resulting in chronic, waxing and waning debilitation for years.
            Valganciclovir is normally used against diseases
            caused by viruses in the herpes family, including
            cytomegalovirus, Epstein-Barr virus and human
            herpes virus-6. These diseases usually affect
            patients whose immune systems are severely
            weakened, such as transplant and cancer patients.
            Montoya, who had used the drug in treating such
            patients for years, decided to try using it on a
            CFS patient who came to him in early 2004 with
            extremely high levels of antibodies for three of
            the herpes family viruses in her blood. At the
            time, she had been suffering from CFS for five years.
            When a virus infects someone, the levels of
            antibodies cranked out by the immune system in
            response typically increase until the virus is
            overcome, then slowly diminish over time. But
            Montoya's patient had persistently high
            antibodies for the three viruses. In addition,
            the lymph nodes in her neck were significantly
            enlarged, some up to eight times their normal
            size, suggesting her immune system was fighting
            some kind of infection, even though a
            comprehensive evaluation had failed to point to any infectious cause.
            Concerned about the unusual elevations in
            antibody levels as well as the swelling of her
            lymph nodes, Montoya decided to prescribe
            valganciclovir. "I thought by giving an antiviral
            that was effective against herpes viruses for a
            relatively long period of time, perhaps we could
            impact somehow the inflammation that she had in her lymph nodes,"
            Within four weeks, the patient's lymph nodes
            began shrinking. Six weeks later she phoned
            Montoya from her home in South America,
            describing how she was now exercising, bicycling
            and going back to work at the company she ran
            before her illness. "We were really shocked by this," recalled Montoya.
            Of the two dozen patients Montoya and Kogelnik
            have since treated, the 20 that responded all had
            developed CFS after an initial flulike illness,
            while the non-responders had suffered no initial flu.
            Some of the patients take the drug for more than
            six months, such as Michael Manson, whose battle
            with CFS has lasted more than 18 years. The
            former triathlete was stricken with a viral
            infection a year after his marriage. After trying
            unsuccessfully to overcome what he thought were
            lingering effects of the flu, he had no choice
            but to drastically curtail all his activities and eventually stop working.
            During his longest period of extreme fatigue, 13
            1/2 weeks, Manson said, "My wife literally
            thought I was passing away. I could hear the
            emotion in her voice as she tried to wake me, but
            I couldn't wake up to console her. That was just maddening."
            Now in his seventh month of treatment, Manson is
            able to go backpacking with his children with no
            ill after-effects. Prior to starting the
            treatment, Manson's three children, ages 9 to 14, had never seen
            Montoya and Kogelnik emphasized that even if
            their new clinical trial validates the use of
            valganciclovir in treating some CFS patients, the
            drug may not be effective in all cases. In fact,
            the trial will assess the effectiveness of the
            medication among a specific subset of CFS
            patients; namely, those who have viral-induced
            dysfunction of the central nervous system.
            "This could be a solution for a subset of
            patients, but that subset could be quite large,"
            said Kristin Loomis, executive director of the
            HHV-6 Foundation, which has helped fund a
            significant portion of the preparatory work for
            the clinical trial. "These viruses have been
            suspected in CFS for decades, but researchers
            couldn't prove it because they are so difficult
            to detect in the blood. If Montoya's results are
            confirmed, he will have made a real breakthrough."
            "What is desperately needed is the completion of
            the randomized, double-blind, placebo-controlled
            clinical trial that we are about to embark on," Montoya said.
            BROADCAST MEDIA CONTACT: M.A. Malone at (650) 723-6912
            People interested in participating in the
            clinical trial must live in the San Francisco Bay
            Area. More information about the clinical trial
            is available online at http://www.vicd.info/clinicaltrial.html.
            Stanford University Medical Center integrates
            research, medical education and patient care at
            its three institutions - Stanford University
            School of Medicine, Stanford Hospital & Clinics
            and Lucile Packard Children's Hospital at
            Stanford. For more information, please visit the
            Web site of the medical center's Office of
            Communication & Public Affairs at http://mednews.stanford.edu.
        [Return to top]
            Date:    Thu, 11 Jan 2007 01:26:41 +1100
            From:    ian <kanga20@xxxxx.xxx>
            Subject: RES: Abstract of article by Montoya et al  on valganciclovir, published in Journal of Clinical Virology, December 2006
            Use of valganciclovir in patients with elevated antibody titers against
            Human Herpesvirus-6 (HHV-6) and Epstein−Barr Virus (EBV)
            who were experiencing central nervous system dysfunction including
            long-standing fatigue
            Andreas M. Kogelnika, Kristin Loomisb, Mette Hoegh-Petersenc, Fernando
            Rosso a,c, Courtney Hischier b, Jose G. Montoya a,c, °
            a Stanford University School of Medicine, Stanford, CA, USA
            b HHV-6 Foundation, Santa Barbara, CA, USA
            c Palo Alto Medical Foundation Research Institute, Palo Alto, CA, USA
            Background: Twelve patients with long-standing symptoms of central
            nervous system (CNS) dysfunction were found to have elevated antibody
            titres to human herpesvirus-6 (HHV-6) and Epstein–Barr virus (EBV). All
            patients had four or more of the following neurocognitive symptoms:
            impaired cognitive functioning, slowed processing speed, sleep
            disturbance, short-term memory deficit, fatigue and symptoms consistent
            with depression.
            Objectives: We sought to determine whether elevated antibodies to EBV
            and HHV-6 indicated chronic viral activation in patients with CNS
            dysfunction and if their symptoms could be improved by suppressing viral
            activity with oral valganciclovir.
            Study design: Patients with high IgG antibody titers against HHV-6 and
            EBV who were suffering from central nervous system dysfunction and
            debilitating fatigue for more than one year (median 3 years, range 1−8
            years) were treated with 6 months of valganciclovir in an open label study.
            Results: Nine out of 12 (75%) patients experienced near resolution of
            their symptoms, allowing them all to return to the workforce or full
            time activites. In the nine patients with a symptomatic response to
            treatment, EBV VCA IgG titers dropped from 1:2560 to 1:640 ( p = 0.008)
            and HHV-6 IgG titers dropped from a median value of 1:1280 to 1:320 ( p
            = 0.271). Clinically significant hematological toxicity or serious
            adverse events were not observed among the 12 patients.
            Conclusion: These preliminary clinical and laboratory observations merit
            additional studies to establish whether this clinical response is
            mediated by an antiviral effect of the drug, indirectly via
            immunomodulation or by placebo effect.
            © 2006 Elsevier B.V. All rights reserved.
        [Return to top]
            Date:    Thu, 11 Jan 2007 17:07:16 -0500
            From:    "Dr. Charles Shepherd <charlesbshepherd@xxxxx.xxx> (via Co-Cure
            Subject: RES,NOTICE:  The Times reports on new US drug trial involving valganciclovir
            *'Drug to be tested on ME patients'*
            *The Times - 11 January 2007*
            *Web link:*
            Dr Charles Shepherd
            Medical Adviser, ME Association
        [Return to top]
            Date:    Fri, 12 Jan 2007 15:10:24 -0500
            From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
            Subject: RES: Skin biopsy findings: Implications for the  pathophysiology of fibromyalgia
            Skin biopsy findings: Implications for the pathophysiology of fibromyalgia.
            Med Hypotheses. 2007 Jan 8; [Epub ahead of print]
            Kim SH.
            Department of Internal Medicine, Dongguk University College of Medicine,
            1090-1 Sukjang-dong, Gyeongju-si 780-714, Republic of Korea.
            PMID: 17215086
            The mechanisms responsible for symptom expression in fibromyalgia (FM) are
            complex. The most consistently detected objective abnormalities in FM
            involve pain-processing systems. Up to recently, central nervous system was
            a primary focus of investigations in FM. Although it is unlikely that FM
            occurs because of primary disorders of the peripheral tissues, there are
            still data to suggest that some abnormalities can be detected in the
            periphery. With the recognition of abnormalities in skin of some FM
            patients, it is now apparent that the role of peripheral nerve endings in
            FM is much greater than previously thought. The aim of this paper is to
            review literature concerning the skin biopsy findings of FM patients and
            discuss their potential relevance to FM.
            This paper suggests that patients with FM represent a state of the
            dysfunction of descending, antinociceptive pathways and low
            hypothalamic-pituitary-adrenal function. This state is further proposed to
            result in many skin biopsy findings associated with the disorder, including
            increased N-methyl-d-aspartate receptors subtype 2D expression, neurogenic
            inflammation and characteristic electron microscopic findings. Future
            direction of research would be identification of specific laboratory
            markers such as skin biopsy for diagnostic and clinical evaluation purposes
            in FM.
        [Return to top]
            Date:    Fri, 12 Jan 2007 15:13:50 -0500
            From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
            Subject: RES: Efficacy of Farabloc as an analgesic in primary  fibromyalgia
            Efficacy of Farabloc as an analgesic in primary fibromyalgia.
            Clin Rheumatol. 2007 Jan 11; [Epub ahead of print]
            Bach GL, Clement DB.
            Department of Medicine/Rheumatology, University of Munich, Munich, Germany.
            PMID: 17216399
            The goal of our study was to determine the efficacy of Farabloc, an
            electromagnetic shielding fabric compared to placebo fabric when worn as a
            nightgown, as an analgesic in patients hospitalized with fibromyalgia. In a
            rheumatologic and rehabilitation hospital, we performed a phase 1,
            single-blind study of patients using Farabloc (F) or placebo (P) gowns for
            8 h per night during the 20-day hospitalization and a phase 2, single-blind
            crossover study of patients using both F and P gowns randomly and
            alternatively switching after 10 of 21 days hospitalization (phase 1: 42 F,
            mean age 49.02 years, 35 female, 7 male; 84 P, mean age 48.08 years, 72
            female, 12 males; phase 2: 25 F/P, P/F, or P/P, mean age 44.0 years, 24
            female, 1 male). The study involved randomly selected and blinded use of
            hospital gown 8 h per night of either F or P fabric.
            The main outcome measures were changes from admission or midpoint to
            discharge in quantity of pain (QN), quality of pain (QL), and paracetamol
            use (PU). In phase 1, all three variables significantly favored F over P
            when using paired t test, two sample t test, Mann-Whitney, and analysis of
            covariance tests. QN was reduced (F = -2.03 -/+ 0.99*, P = 0.59 -/+ 0.71).
            QL was reduced (F = -10.64 -/+ 5.69*, P = -2.54 -/+ 3.40). PU was reduced
            (F = 10.69 -/+ 6.68*, P = 26.12 -/+ 9.37). In phase 2, comparing midpoint
            to discharge levels in the three variables again favored P/F over F/P and
            P/P (>0.001): QN (P/F +16.00 -/+ 8.35* F/P -13.27 -/+ 11.40), QL (P/F +8.71
            -/+ 4.75* F/P -6.55 -/+ 5.59), and PU (F -9.29 -/+ 4.39* P -18.00 -/+ 5.27)
            (*p = <0.001). Patients with fibromyalgia had less pain after sleeping in a
            gown made of Farabloc than with a placebo fabric.
            This suggests that Farabloc, an electromagnetic shielding fabric, has
            analgesic properties in fibromyalgia. Reduced pain observation is
            consistent with previous studies in phantom limb pain and delayed onset
            muscle pain. Limitations of this study include single blind design, small
            sample size, and in phase 2, a lack of washout period and a F/F group.
        [Return to top]
            Date:    Sat, 13 Jan 2007 13:45:55 -0500
            From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
            Subject: RES: Increased cancer risk in patients referred to hospital  with suspected fibromyalgia
            Increased cancer risk in patients referred to hospital with suspected
            J Rheumatol. 2007 Jan;34(1):201-6.
            Dreyer L, Mellemkjaer L, Kendall S, Jensen B, Danneskiold-Samse B, Bliddal H.
            From The Parker Institute, Department of Rheumatology, Frederiksberg
            Hospital, Frederiksberg; Institute of Cancer Epidemiology, Danish Cancer
            Society, Copenhagen; and Multidisciplinary Pain Centre, H:S Rigshospitalet,
            Copenhagen, Denmark.
            PMID: 17216687
            OBJECTIVE: To analyze whether fibromyalgia (FM) and FM-like symptoms are
            related to an increased incidence of cancer.
            METHODS: We identified 1361 patients referred on suspicion of FM in the
            period 1984-99 from hospital records. Following the American College of
            Rheumatology (ACR) criteria, patients were divided into subgroups with and
            without confirmed FM. The cohort was followed to the end of 1999 and linked
            to the files of the Danish Cancer Register. Site-specific standardized
            incidence ratios (SIR) were calculated.
            Results. We found no association between FM and cancer in 1132 female
            patients with confirmed FM at our institution (SIR 1.2, 95% CI 0.8-1.8). In
            106 women referred for muscle pain and/or tenderness who did not meet the
            criteria for FM, an increased overall SIR was observed (SIR 2.5, 95% CI
            1.2-4.6), with increased risk for breast cancer (SIR 4.8, 95% CI 1.6-11.3)
            and lymphatic and hematological cancers (SIR 10.6, 95% CI 1.2-38.2). There
            were 4 lung cancers in 84 men with confirmed FM (SIR 12.6, 95% CI 3.4-32.4).
            Conclusion. Neither confirmed FM nor those without confirmed FM predicted
            cancer. An increased risk of breast cancer was found among those who did
            not meet the ACR criteria for FM. These patients should be investigated if
            they develop any new or warning symptoms of malignancy, and treating
            physicians should be vigilant with screening procedures such as mammography.
        [Return to top]
            Date:    Sun, 14 Jan 2007 17:09:50 -0500
            From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
            Subject: RES: Musculoskeletal Pain in Malaysia: A COPCORD Survey
            Musculoskeletal Pain in Malaysia: A COPCORD Survey.
            J Rheumatol. 2007 Jan;34(1):207-13.
            Veerapen K, Wigley RD, Valkenburg H.
            PMID: 17216688
            OBJECTIVE: To assess the nature and extent of rheumatic complaints in a
            semirural area in a multiracial (Malay, Indian, Chinese) community in
            Malaysia using the Community Oriented Program for the Control of Rheumatic
            Diseases (COPCORD) protocol initiated by ILAR and the WHO.
            METHODS: All members of a community of 2700 persons over the age of 15
            years were offered a questionnaire based interview in Phase 1 of the study.
            Those with rheumatic complaints (pain in the last 1 week) were invited for
            a physical examination by a rheumatologist in Phase 2.
            RESULTS: In total, 2594 (96%) persons agreed to a questionnaire based
            interview. Of those interviewed, 21.1% had a current rheumatic complaint.
            The pain rate was higher in women (23.8%) than in men (17.8%). Chinese men
            had the lowest age-standardized pain rate (9.9%), while Indian women had
            the highest rate (28.4%). In the study population, 14.4% complained of pain
            in the joints and/or musculoskeletal pain and 11.6% had low back pain. The
            knee was responsible for 64.8% of all complaints pertaining to the joints,
            and more than half those examined with knee pain had clinical evidence of
            osteoarthritis (OA). The complaint rate increased with age, up to 53.4% in
            the group age > 65 years. The major disability encountered was the
            inability to squat (3.1%). Fibromyalgia, soft tissue lesions, and localized
            OA of the knees were the main clinical diagnoses. Inflammatory arthritis
            was uncommon. Both Western and traditional sources of healthcare were used,
            often together. Self-medication was common (58.8%).
            Conclusion. Knee and back pain are the main rheumatic complaints in
            Malaysia, with complaint rates differing according to race and gender.
        [Return to top]
            Date:    Mon, 15 Jan 2007 14:20:49 -0800
            From:    Co-Cure Moderators <bookbear13@xxxxx.xxx>
            Subject: MED:  Medically Unexplained Physical Symptoms to be posted
            Moderators Note:  Resent for 
            Please contact the PR Director named  rather than the moderators for further information on the following post as we have no further statistics nor contact information than is listed.
            The National ME/FM Action Network welcomes Statistics Canadas study
            on Medically Unexplained Physical Symptoms.
            The study confirms what the National ME/FM Action Network has observed
            over its twelve (12) years of advocacy and support for Canadians with
            Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM)  that CFS and FM are
            widespread and that patients with these illnesses have high degrees of
            Lydia Neilson, M.S.M., president of the National ME/FM Action Network,
            hopes that this study will lead to more research into these illnesses and to
            better health and social support for those with the illnesses. Ms Neilson
            emphasizes the importance of early diagnosis and treatment to prevent
            the conditions from becoming chronic.
            The National ME/FM Action Network, with the information now provided by
            Statistics Canada, is more and more determined to pursue its goal of
            advancing the recognition and understanding of Chronic Fatigue Syndrome
            and Fibromyalgia through education, advocacy, support and research.
            Odile Gerin, public relations director,
            National ME/FM Action Network
        [Return to top]

    End of Co-Cure Weekly Digest of research and medical posts only - 8 Jan 2007 to 15 Jan 2007

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