There are 8 messages in this issue. Topics of the week:
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. ~jan ```````````````````` http://www.eurekalert.org/pub_releases/2007-01/sumc-ntf010807.php Public release date: 8-Jan-2007 Contact: Louis Bergeron louisb3@xxxxx.xxx 650-723-0272 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 medicine (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," said Montoya. 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 him healthy. 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 (mamalone@xxxxx.xxx) 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 Abstract 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 Moderators)" Subject: RES,NOTICE: The Times reports on new US drug trial involving valganciclovir *MAY BE REPOSTED* ** *'Drug to be tested on ME patients'* ** *The Times - 11 January 2007* ** *Web link:* ** http://www.timesonline.co.uk/article/0,,8122-2542213,00.html 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 fibromyalgia. J Rheumatol. 2007 Jan;34(1):201-6. Dreyer L, Mellemkjaer L, Kendall S, Jensen B, Danneskiold-Samsøe 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 ogerin@xxxxx.xxx 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. MEDICALLY UNEXPLAINED PHYSICAL SYMPTOMS 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 disability. 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] ------------------------------
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