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[Return to digest index] --------------------------------------------- This is a special digest of Co-Cure Research & Medical posts only Problems? Write to mailto:email@example.com --------------------------------------------- ---------------------------------------------------------------------- Date: Tue, 1 May 2007 12:19:49 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: A randomized, controlled, trial of controlled release paroxetine in fibromyalgia A randomized, controlled, trial of controlled release paroxetine in fibromyalgia. Am J Med. 2007 May;120(5):448-54. Patkar AA, Masand PS, Krulewicz S, Mannelli P, Peindl K, Beebe KL, Jiang W. Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC 27704, USA. ashwin.patkar duke.edu PMID: 17466657 PURPOSE: We investigated the efficacy and tolerability of paroxetine controlled release, a selective serotonin reuptake inhibitor in fibromyalgia. METHODS: After excluding patients with current major depression and anxiety disorders, 116 subjects with fibromyalgia were enrolled in a 12-week, randomized, double-blind, placebo-controlled, trial of paroxetine controlled release (12.5-62.5 mg/day). The primary outcome measure was proportion of responders as defined as a> or =25% reduction in scores on the Fibromyalgia Impact Questionnaire (FIQ) from randomization to end of treatment. Secondary outcome measures included changes in FIQ scores, Clinical Global Impression -Improvement (CGI-I) and Severity (CGI-S) scores, Visual Analogue Scale for pain scores, number of tender points, and scores on the Sheehan Disability Scale (SDS). RESULTS: Significantly more patients in paroxetine controlled release group (57%) showed a> or =25% reduction in FIQ compared to placebo (33%) (P=.016). Paroxetine controlled release was significantly superior to placebo in reducing the FIQ total score (P =.015). The CGI-I ratings significantly favored the drug over placebo (P<.005). The improvements on other secondary outcome measures between the 2 groups were not statistically significant. Drowsiness, dry mouth, blurred vision, genital disorders, and anxiety were reported more frequently with paroxetine controlled release. The mean dose of paroxetine controlled release was 39.1 mg/day. CONCLUSIONS: Paroxetine controlled release appears to be well-tolerated and improve the overall symptomatology in patients with fibromyalgia without current mood or anxiety disorders. However, its effect on pain measures seems to be less robust. [Return to top] ------------------------------ Date: Tue, 1 May 2007 19:45:44 +0200 From: Jan van Roijen <j.van.roijen CHELLO.NL> Subject: not,med: ME/CFS & FM - State conferences ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< >>>> 1 May 2007 <<<< Editorship : j.van.roijen chello.nl Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ http://www.thespectrum.com/apps/pbcs.dll/article?AID=/20070430/NEWS01/70430009 The Spectrum State conferences focus on Chronic Fatigue, Fibromyalgia ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The Organization for Fatigue and Fibromyalgia Education and Research (OFFER) will host two Utah Health conferences this Friday and Saturday in Salt Lake City. The two conferences are designed to offer Utah medical professionals and patients a chance to hear from some of the country's top experts on chronic fatigue syndrome and fibromyalgia. Experts will discuss the latest research advances and treatment strategies for these two chronic illnesses. Present will be Lucinda Bateman, MD, of the Fatigue Consultation Clinic; Suzanne Vernon, PhD, of the Centers for Disease Control and Prevention; Kimberly McCleary, president and CEO of the CFIDS Association of America; David Bell, MD, a pioneering CFS physician; Kathleen Light, PhD, of the University of Utah; and other experts. Sen. Orrin Hatch also will be present. He will make closing remarks at the conference for health care professionals and then make opening remarks for the conference for patients and caregivers. He will also receive an award acknowledging his efforts to further CFS research and advocacy. Both conferences will be at the Professional Development Center at Salt Lake Community College Miller Campus, 9750 S. 300 West, Sandy. For more information, call Linda Milne at 801-328-8080 or visit www.offerutah.org on the Internet. [Return to top] ------------------------------ Date: Wed, 2 May 2007 00:41:42 +0200 From: Jan van Roijen <j.van.roijen CHELLO.NL> Subject: res: ME/CFS Alters Sleep ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< >>>> 2 May 2007 <<<< Editorship : j.van.roijen chello.nl Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ http://psychcentral.com/news/2007/05/01/chronic-fatigue-syndrome-alters-sleep/ Psych Central Sleep Disorders Chronic Fatigue Syndrome Alters Sleep ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ By: Psych Central News Editor on Tuesday, May, 1, 2007 Reviewed by: John M. Grohol, Psy.D. on Tuesday, May, 1, 2007 We all know what it feels like when a good rest is not obtained for several consecutive days. Now imagine what it is like to feel this way everyday, a condition called chronic fatigue syndrome (CFS). In a new study, researchers find that brain wave activity is blunted in CFS, potentially clearing the distinction between CFS and depression. Chronic fatigue syndrome (CFS) has been associated with altered amounts of slow wave sleep, which could reflect reduced electroencephalograph (EEG) activity and impaired sleep regulation. The study published in the May 1st issue of the journal SLEEP finds that CFS is also associated with a blunted slow wave activity (SWA) response to sleep challenge, suggesting an impairment of the basic sleep drive and homeostatic response. The study, authored by Roseanna Armitage, PhD, and colleagues at the University of Michigan, focused on 13 pairs of identical twins discordant for CFS. Analyses, which were restricted to the first four non-REM periods each night in order to show comparability, revealed that SWA, or other sleep EEG measures, did not differ between the CFS and healthy twins during a regular night's sleep. According to Armitage, it was only after a "challenge" to sleep regulation was introduced (keeping them awake an extra four hours) that the CFS twins exhibited significantly less SWA power in the first non-REM period of recovery sleep and accumulated a smaller percentage of SWA in the first non-REM period than their twin counterparts. "CFS shares symptoms with depression, and some experts have suggested that it is not a distinctly different disorder," said Armitage. "We have also conducted studies of SWA response to sleep challenge in depression, and the results are very different. Depressed women did not show a blunted SWA response to sleep challenge. The present CFS study included only women, and none had current depression. Therefore, our results cannot be explained on the basis of depression." Experts recommend that adults get between seven and eight hours of sleep each night to maintain good health and optimum performance. Persons who think they might have a sleep disorder are urged to consult with their primary care physician, who will refer them to a sleep specialist. Source: American Academy of Sleep Medicine http://www.aasmnet.org/ [Return to top] ------------------------------ Date: Tue, 1 May 2007 17:54:52 -0700 From: Steven Du Pre <isaiah40 SONIC.NET> Subject: NOT, MED, RES: Dr. Malcolm Hooper's articles Hello, The 2006 Dr. Hooper article cited in a previous Co-Cure post as well as other articles by Dr. Hooper can be found at this URL: http://www.name-us.org/DefintionsPages/DefHooper.htm Steven Du Pre Poetry website: http://www.angelfire.com/poetry/soareagle/index.html "By words the mind is winged." Aristophanes Website for National Alliance for Myalgic Encephalomyelitis: http://www.name-us.org [Return to top] ------------------------------ Date: Wed, 2 May 2007 12:04:08 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: Benefits of physical training in fibromyalgia and related syndromes Benefits of physical training in fibromyalgia and related syndromes. Ann Readapt Med Phys. 2007 Apr 13; [Epub ahead of print] Maquet D, Demoulin C, Croisier JL, Crielaard JM. Department of Motricity Sciences, University of Liege, ISEPK, B21, allee des sports 4, 4000 Liege, Belgium; CHU Sart Tilman, Liege, Belgium. PMID: 17467103 OBJECTIVE: To review the published information on physical training for fibromyalgia (FM) and related syndromes. METHODS: A search of Medline literature (via Ovid and PubMed) with the following keywords: FM, chronic fatigue syndrome, therapy, rehabilitation, aerobic, exercise, and cognitive behavioral therapy. The reference lists of articles were examined for additional related articles. RESULTS: Several studies investigated the benefits of graded exercise therapy for patients with FM or related syndromes. Although some systematic reviews have not established an unequivocal benefit of physical training, most authors report a benefit for patients with chronic pain or fatigue. Ideally, such a therapy should be a part of multidisciplinary program. Muscular rehabilitation is reserved for preventing the deconditioning syndrome often reported in patients and the vicious cycle of pain, avoidance and inactivity behaviors, or even kinesiophobia, deconditioning, incapacity and psychological distress. CONCLUSION: This review emphasizes the relevance of graded physical training for treating FM and related syndromes. The development of rehabilitation centers, with experts able to propose a relevant therapy to patients with chronic pain or fatigue, should help alleviate this public health problem. [Return to top] ------------------------------ Date: Wed, 2 May 2007 12:11:56 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: Fatigue in multiple sclerosis: association with disease-related, behavioural and psychosocial factors. Fatigue in multiple sclerosis: association with disease-related, behavioural and psychosocial factors. Mult Scler. 2007 Apr 27; [Epub ahead of print] Trojan DA, Arnold DL, Collet JP, Shapiro S, Bar-Or A, Robinson A, Le Cruguel JP, Ducruet T, Narayanan S, Arcelin K, Wong AN, Tartaglia MC, Lapierre Y, Caramanos Z, Da Costa D. Department of Neurology and Neurosurgery, Montreal Neurological Insitute and Hospital, McGill University Health Centre, McGill University, Montreal, Quebec, Canada. PMID: 17468448 We determined biopsychosocial correlates of general, physical, and mental fatigue in MS patients, by evaluating the additional contribution of potentially modifiable factors after accounting for non-modifiable disease-related factors. Fifty-three ambulatory MS patients, along with 28 normal controls were recruited for a cross-sectional study. Subjects completed the Multidimensional Fatigue Inventory (MFI) and Fatigue Severity Scale. Potential correlates evaluated were: disease-related factors (disease duration and type, immunomodulating treatment, muscle strength, pain, forced vital capacity (FVC), respiratory muscle strength, body mass index, disability, fibromyalgia), behavioural factors (physical activity, sleep quality) and psychosocial factors (depression, stress, self-efficacy). Multivariate models were calculated for MFI General, Physical, and Mental Fatigue. Age-adjusted multivariate models with non-modifiable factors included the following predictors (P</=0.10) of 1) MFI General and Mental Fatigue: none; and 2) MFI Physical Fatigue: FVC and disability. The following potentially modifiable predictors (P</=0.10) made an additional contribution to the models 1) MFI General Fatigue: sleep quality, self-efficacy, pain; 2) MFI Physical Fatigue: self-efficacy, physical activity; and 3) MFI Mental Fatigue: stress, self-efficacy. Fatigue in MS is multidimensional. Correlates of general and physical fatigue are disease-related, behavioural and psychosocial factors. Correlates of mental fatigue are psychosocial factors. Potentially modifiable factors account for a considerable portion of fatigue. [Return to top] ------------------------------ Date: Wed, 2 May 2007 12:30:15 -0400 From: Co-Cure Moderator <ray CO-CURE.ORG> Subject: NOT,MED: Prescribed Medications for Fibromyalgia: By Mark Pellegrino, M.D. - 2007 Update Mark J. Pellegrino, M.D., is Board Certified in Physical Medicine and Rehabilitation and Electrodiagnostic Medicine, and is one of the nation's leading experts on Fibromyalgia. Dr. Pellegrino is the author of numerous books and articles on Fibromyalgia, and despite having Fibromyalgia, he maintains an active medical practice with more than 20,000 patients cared for. He was recently named in "Best Doctors in America." The following article is an updated excerpt from a chapter of Fibromyalgia, Up Close and Personal by Mark J. Pellegrino, M.D. Prescribed medicines are an important part of fibromyalgia treatment. Presently there are no FDA approved medicines for the treatment of fibromyalgia. Many studies have been published, however, that show how numerous prescribed medicines can benefit those with fibromyalgia. Physicians are able to prescribe these medicines off-label for fibromyalgia because of these evidence-based studies. Pain relief, improved sleep, more energy, and better mood are examples of goals that prescription medicines can help you reach. People with fibromyalgia tend to be more sensitive to medications and often experience side effects such as nausea, drowsiness, or lightheadedness. Lower doses of medicines need to be considered for fibromyalgia. Prescribed medicines can provide great benefits to many, so it is worthwhile to work together with the physician to try to find a successful medicine regimen. Categories of drugs used in the treatment of fibromyalgia can include: 1. Analgesics 2. Anti-inflammatory medicines 3. Antidepressant medicines 4. Muscle relaxants 5. Sleep modifiers 6. Anti-anxiety medicines 7. Other medicines used to treat chronic pain. Read the complete article at http://www.immunesupport.com/library/showarticle.cfm?id=3308 [Return to top] ------------------------------ Date: Wed, 2 May 2007 16:32:08 -0400 From: Co-Cure Moderator <ray CO-CURE.ORG> Subject: NOT,MED: FDA - MedWatch - Antidepressant Medications - FDA Proposes That Manufacturers Update Product Labeling To Include New Warnings About Suicidal Thinking and Behavior In Young Adults [US] MedWatch - The FDA Safety Information and Adverse Event Reporting Program FDA notified healthcare professionals that the Agency proposed that makers of all antidepressant medications update the existing black box warning on the prescribing information for their products to include warnings about the increased risks of suicidal thinking and behavior in young adults ages 18 to 24 years old during the first one to two months of treatment. The proposed labeling changes also state that scientific data did not show this increased risk in adults older than 24 years of age and that adults 65 years of age and older taking antidepressants have a decreased risk of suicidality. The proposed updates apply to the entire category of antidepressants. Individuals currently taking prescribed antidepressant medications should not stop taking them and should notify their healthcare professional if they have concerns. Manufacturers of antidepressant medications will have 30 days to submit their revised product labeling and revised Medication Guides to FDA for review. See the FDA press release for the list of products affected by the proposed antidepressant product labeling changes. Read the complete MedWatch 2007 Safety summary, including a link to the FDA Press Release and Antidepressant Information Page regarding this issue at: http://www.fda.gov/medwatch/safety/2007/safety07.htm#Antidepressant [Return to top] ------------------------------ Date: Thu, 3 May 2007 09:03:23 -0400 From: "Jean Harrison <firstname.lastname@example.org> [via Co-Cure Moderators] Subject: RES:New Results show brain abnormalities in GWS patients http://www.eurekalert.org/pub_releases/2007-05/aaon-bso041007.php BOSTON -- Veterans of the first Gulf War who returned with multiple health symptom complaints show significant differences in brain structures from their fellow returnees without high numbers of health symptoms, according to research that will be presented at the American Academy of Neurology's 59th Annual Meeting in Boston, April 28 - May 5, 2007. The study involved 36 veterans of the first Gulf War (1990-1991). Half of the veterans had a high number (more than five) of symptoms, such as joint pain, fatigue, forgetfulness, headaches, skin rash, nausea, and difficulty concentrating. The other half of the veterans had a lower number (five or fewer) of symptoms. Researchers found that two areas of the brain involved in thinking and memory were significantly smaller in the veterans with a high number of symptoms than in the veterans with fewer symptoms. The overall cortex was five percent smaller in those with more symptoms, and the rostral anterior cingulated gyrus was six percent smaller. Those with more symptoms also did not perform as well on tests of learning and memory. On one test, those with more symptoms scored 15 percent lower than those with fewer symptoms; the score was 12 percent lower on another test. The researchers found that the smaller the brain volume was in those areas, the worse the veterans performed on the memory tests. "We don't know the cause of these differences in the veterans' brain volumes, but the hypothesis is that they are related to exposure to hazardous substances during the first Gulf War," said study author Roberta White, PhD, of Boston University School of Public Health. "Many troops were exposed to hazardous substances such as pesticides, and other studies have shown that exposures to these substances affect the central nervous system." [Return to top] ------------------------------ Date: Thu, 3 May 2007 13:38:31 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: Fibromyalgia -- a challenge for interdisciplinary management [Fibromyalgia -- a challenge for interdisciplinary management] [Article in German] Wien Med Wochenschr. 2007 Jan;157(1-2):27-33. Furst G. Fachbereich Physikalische Medizin, Allgemeines und Orthopadisches Landeskrankenhaus Stolzalpe, Stolzalpe, Osterreich. email@example.com PMID: 17471829 Fibromyalgia is a common chronic pain syndrome affecting particularly middle aged women. The symptomatology is characterized by diffuse widespread myofascial pain and tenderness on palpation at multiple "tender points". Additional symptoms are various vegetative and functional disorders, nonrestorative sleep, depression and anxiety. Etiology and pathogenesis of fibromyalgia still remain unclear. Current pathogenetic theories conceptualize a combination of biological and psychic, social and mental factors. Diagnosis is based on the characteristic clinical presentation, the presence of multiple tender points and the exclusion of certain disorders with similar symptoms. Laboratory examinations and imaging only provide nonconclusive results. Medication and physical therapies only accomplish some temporary symptomatic relief (30-50%). Psychosomatic rehabilitation should not focus on reduction of pain, but rather on physical reconditioning and development of an active coping style. In this context psychological interventions, education and psychotherapy are essential. [Return to top] ------------------------------ Date: Thu, 3 May 2007 13:41:35 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: Difficulties with diagnosis of fibromyalgia: case report [Difficulties with diagnosis of fibromyalgia: case report] [Article in Polish] Ann Acad Med Stetin. 2006;52 Suppl 2:105-10. Atarowska M, Samborski W. Klinika Fizjoterapii Reumatologii i Rehabilitacji Akademii Medycznej im. K. Marcinkowskiego ul. 28 Czerwca 1956 roku 135/147, 61-545 Poznan. PMID: 17471845 PURPOSE: We present a case of a 33-year-old woman with nonspecific systemic symptoms (fatigue, weakness), widespread pains, sleep disorders, morning stiffness, accompanied by symptoms from the autonomic nervous system (chest pain, digestive tract disorders, hyperesthesia of the skin, dizziness, paresthesia with a feeling of coldness in hands and feet, excessive sweating, breath problems, palpitations). The diagnostic process was difficult and it took a long time to establish the diagnosis partly because of problems in cooperating with this patient. During several years, the woman was hospitalized at several specialist departments, underwent many consultations, laboratory tests, and imaging studies. Finally, fibromyalgia was diagnosed. CONCLUSIONS: Treatment was implemented with good results improving the quality of life of this patient. [Return to top] ------------------------------ Date: Fri, 4 May 2007 12:26:09 -0400 From: "Bernice A. Melsky" <bernicemelsky@VERIZON.NET> Subject: RES: Projected state-specific increases in self-reported doctor-diagnosed arthritis and arthritis-attributable activity limitations -- United States, 2005-2030 [US] Projected state-specific increases in self-reported doctor-diagnosed arthritis and arthritis-attributable activity limitations -- United States, 2005-2030. MMWR Morb Mortal Wkly Rep. 2007 May 4;56(17):423-5. Centers for Disease Control and Prevention (CDC). PMID: 17476205 Arthritis and other rheumatic conditions (e.g., gout, lupus, and fibromyalgia) affect approximately 46 million adults in the United States, resulting in substantial disability and costs of $128 billion annually. Because U.S. adults are living longer and the number of persons in older age groups is growing, the number of U.S. adults living with chronic conditions such as arthritis likely will increase. The number of U.S. adults with doctor-diagnosed arthritis has been projected to reach nearly 67 million adults by the year 2030, including 25 million adults who are expected to have arthritis-attributable activity limitations. This report supplements those estimates by projecting the number of adults aged >/=18 years in each state who will have doctor-diagnosed arthritis and arthritis-attributable activity limitations in 2030. The results indicate that, among 48 states, the median projected increase in doctor-diagnosed arthritis from 2005 to 2030 will be 16%; a total of 14 states are projected to have increases of 30% to 87%. Greater use of existing evidence-based interventions and development of new interventions aimed at decreasing pain, improving function, and delaying disability associated with arthritis are needed to reduce the impact of these projected increases, particularly in those states that will be most heavily affected. [Return to top] ------------------------------ Date: Fri, 4 May 2007 12:31:34 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: Fibromyalgia in women with ankylosing spondylitis Fibromyalgia in women with ankylosing spondylitis. Rheumatol Int. 2007 May 3; [Epub ahead of print] Aloush V, Ablin JN, Reitblat T, Caspi D, Elkayam O. Departments of Rheumatology, Tel Aviv Sourasky Medical Center and the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel. PMID: 17476510 Fibromyalgia (FM), pre-dominantly found in women, may accompany other pre-existing rheumatic diseases. The association between FM and ankylosing spondylitis (AS) is uncertain. We evaluated FM in women with AS. Eighteen women with AS were compared with 18 men with AS (controls) for age, duration of symptoms, time to diagnosis, degree of sacroiliac involvement, history of peripheral arthritis, patient global assessment, Health Assessment Questionnaire, Fibromyalgia Impact Questionnaire, level of diffuse pain, Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), and Bath Ankylosing Spondylitis Functional Index (BASFI). Physical examination included the number of tender points and enthesitis sites, Schober test, distance between occiput and wall, chest expansion, lateral spinal flexion, and intermalleolar distance. Inflammatory activity was measured by the erythrocyte sedimentation rate (ESR). Of all tested parameters, the ones with significant differences between the groups were time between symptom onset and AS diagnosis (longer for women), FM incidence and the number of tender points and enthesitis sites (higher for women), BASDAI (higher in women and correlated with FM and the number of tender points but not with ESR), and BASFI and BASDAI scores (increased in FM patients). FM was present in 50% of women with AS and associated with higher disease activity indices (BASDAI and BASFI) and not related to severity of physical findings or ESR. The reliability of well-accepted assessment tools of AS, such as BASDAI and BASFI, in evaluating AS activity in women may be called into question due to a confounding effect of FM. [Return to top] ------------------------------ Date: Fri, 4 May 2007 19:22:15 +0200 From: Jan van Roijen <j.van.roijen CHELLO.NL> Subject: not,med: All Party Parliamentary Group on ME (UK) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< >>>> 4 May 2007 <<<< Editorship : j.van.roijen chello.nl Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ http://www.afme.org.uk/res/img/resources/APPG%20minutes%2022-02-07.pdf All Party Parliamentary Group on M.E. Chair: Dr Des Turner MP Vice-Chairs: Andrew Stunell MP Tony Wright MP Secretary: Dr Ian Gibson MP Treasurer: David Amess MP Minute of the Meeting of the APPG on M.E. held 1.30pm, Thursday 22 February 2007, Committee Room 17, House of Commons PRESENT Dr Des Turner MP (Chair) Andrew Stunell MP (Vice Chairman) Peter Luff MP Tony Wright MP Sarah Vero, office of Dr Ian Gibson MP Andrew Falconer, office of Sir Robert Smith MP Professor Peter Littlejohns, NICE Dr Esther Crawley, NICE Guideline Development Group Fiona Cairns, Action for M.E Angela Murphy, Action for M.E Heather Walker, Action for M.E. Dr Charles Shepherd, ME Association Tony Britton, ME Association Adrian Ward, NICE Colette Marshall, NICE Sarita Tomber, NICE Paul Davis, RiME Richard Crossick, North London ME Group Hazel Griffiths North London ME Group Ciaran Farrell, Person with ME Christine Harrison, BRAME Criona Wilson, mother of the late Sophia Mirza Doris Jones, 25% Group Di Newman, Peterborough ME and CFS Group and Cambs Neuro Alliance Clive Page, Father of person with ME Augustine Ryan, Person with ME Hubert Berger Rebecca Anderson Jo Dubiel, Person with ME Jill Pigott, Worcestershire ME Group APOLOGIES John Baron MP, Betty Williams, MP, Kelvin Hopkins MP, Dr Julian Lewis MP, Jenny Willott MP, Bill Olner MP, Clive Efford MP, Nadine Dorries MP, Dr Roger Berry MP, Steve McCabe MP, Jim Hood MP, Ann Widdecombe MP, John McDonnell MP, Joan Humble MP, David Lepper MP, Mark Todd MP, James Plaskitt MP, Chris Mullin MP, Tim Boswell MP, Lembit Opik MP, Ben Wallace MP, Jeremy Wright MP, Lady Sylvia Hermon MP, John Thurso MP, Peter Bottomley MP, Cheryl Gillan MP, Hywel Williams MP, Tom Brake MP, Mike Hancock MP, Fraser Kemp MP, Lord Clement-Jones, Tim Farron MP, Celia Barlow MP, Tony Wright MP, Ann McKechin MP, Eddie O'Hara MP, Sandra Gidley MP, Sir Robert Smith MP 1. WELCOME Dr Turner welcomed people to the meeting. He explained that as Professor Michael Rawlins, chairman of the National Institute for Health and Clinical Excellence (NICE), was unable to attend the meeting to discuss the draft clinical guideline for CFS/ME, NICE was being represented by Professor Peter Littlejohns, Clinical and Public Health Director of NICE and Dr Esther Crawley, Consultant Paediatrian and Guideline Development Group member. Professor Peter Littlejohns thanked the Group for inviting NICE to attend. He explained that he had been responsible for clinical guidelines at NICE since their inception. All NICE guidelines were produced on the basis of best available evidence and on a process based on transparency, active consultation and review. He added that guidance however robust is not set in stone; medical advances can happen very quickly and NICE aims to make guidance as up to date as possible. A total of 118 guidelines, including 51 of clinical guidance, have been produced over the past 18 months. NICE was the biggest guideline production unit in the world. Any organization affected by a guideline should be part of the development of that guideline. Dr Crawley explained that as well as being on the Guideline Development Group, she is a paediatrician who sees 150-200 children with CFS/M.E. every year. She said she had been very struck by the consultation, both the initial questionnaire and the feedback on the draft guideline. Dr Turner said that the guideline on CFS/M.E. was unique compared to guidelines on other illnesses, in that M.E. is a spectrum of illnesses. Dr Crawley said that although this had been a cause of controversy and had made the guidelines difficult to draft, the aim of the Development Group had been to encourage clinicians to consider a diagnosis of M.E. at an earlier stage. Professor Littlejohns said each new guideline has its own challenges. The initial scoping exercise helped people to focus and identify limitations on what was possible in the timescale available. Hugh Berger, father of a person with M.E., asked the NICE representatives if they agree with the WHO definition of M.E. as a neurological condition. Professor Littlejohns and Dr Crawley were unable to answer directly. Dr Crawley said the issue had come up in the consultation but that it wasn't part of the scope of the guideline to discuss definitions. Hugh Berger asked if they considered M.E. a psychiatric condition. Professor Littlejohns said that although NICE considered definitions, NICE was not in a position to define conditions. Dr Crawley said she believed in the biopsychosocial model of the illness, that it can be genetically inherited but that body and mind are linked. Hugh Berger said this model is offensive to people with M.E., a physical illness. Di Newman added the draft guideline is already turning back time for those GPs who have accepted that M.E. is a physical illness and that terms like biopsychosocial" are used by insurance companies which do not want to make payouts to people with M.E. Dr Charles Shepherd highlighted that people with M.E. suffered financially, by losing benefits, when the psychosocial model was used. NICE had to accept the WHO classification of M.E. as a neurological illness. Professor Littlejohns said the guidance would be listed on the neurological section of the NICE website. He said that he was not qualified and did not feel the APPG was the place for him to discuss definitions. Paul Davis said the terminology of the draft guideline was skewed and based in misinformation. In his opinion the document was irrelevant and potentially dangerous in that it recommended graded exercise therapy (GET) and said lack of exercise prolongs the illness. This is offensive to people with M.E. Ciaran Farrell later echoed this, saying a guideline which recommends cognitive behaviour therapy (CBT) and GET as treatments of first choice was at odds with definitions of and criteria for M.E., which indicate that exercise makes people with M.E. feel worse. He also felt that by regarding relapses as set-backs, the draft guideline implied that the illness was psychological and that people were choosing not to recover. Professor Littlejohns said that the guide was a draft and that while he could not predict the results of the consultation process, he believed a number of concerns raised had been heard by the Guideline Development Group. Dr Crawley said the guideline emphasised that there should be a choice of treatments and that programmes should be individually tailored. No-one would be forced into CBT or GET. Dr Shepherd challenged this: the guideline described CBT and GET as therapies of first choice. A number of charities had signed a joint statement which drew on feedback from patients: GET can be harmful and CBT does not benefit everyone. Dr Crawley said that the guideline could have been worded better, adding that the Group had listened to consultees and been informed by the consultation. Professor Littlejohns confirmed that NICE was keen to listen to patients as well as clinicians and others involved. Christine Harrison BRAME read out a statement, raising the specific problems of the severely affected and their carers and pointing out that specialist NHS services are under threat due to funding. She asked who would take responsibility if health professionals follow the NICE guidelines promoting CBT and GET and patients are mismanaged, misdiagnosed or experience a serious deterioration in their health, or even die? Under the current system, the severely affected are sometimes taken into care against their will, and forcibly removed from their home, despite their families protests. Criona Wilson described the tragic circumstances of her late daughter, Sophia Mirza, who was treated as mentally ill by doctors and sectioned before her death. It took an autopsy to prove that her spinal chord was inflamed. Christine Harrison and Di Newman confirmed that Sophia was not a solitary case. Christine had been in contact with a number of parents whose children with M.E. have been sectioned or lost their children completely in their 20s or 30s. Dr Turner said that if the NICE guidelines are going to be any use, they should give some protection to families and individuals affected by M.E. Tony Wright MP said that the importance of the NICE guideline was clear when children and young people were being sectioned and adults were not getting benefits to which they were entitled. He said it was wrong that people may be seen either by doctors who do or do not accept the WHO classification of M.E. as a neurological illness. He believed that NICE has a duty to protect people from doctors who do not accept the evidence of families who say their loved one has a physical condition. Professor Littlejohns said that changes to the guideline would be documented. The guideline would form part of national clinical standards and doctors would be assessed on whether they meet these standards. Angela Murphy was disappointed that the guideline had made no recommendation for further biomedical research. Dr Crawley said that she was passionate about biomedical research and that the guideline group had been struck by the lack of epidemiological and other evidence. Angela pointed out the difficulties people had experienced with the consultation process, in terms of accessibility and transparency. For example, the guideline was too long, there had been problems with electronic distribution, the information needed to be tailored for specific audiences and the timeframe for responses was limited for people with severe fatigue. Professor Littlejohns said he took these points on board. Doris Jones echoed earlier points made about the potential dangers of CBT and GET, quoted evidence for the physicality of the illness and pointed out that suicide is the third most common cause of death among people with CFS/M.E. after cancer and heart attack. CBT/GET cannot resolve serious physical illness, she added. Dr Shepherd asked whether the guideline would still be implemented after publication in August if it still did not have the confidence of patients. Professor Littlejohns said that guidelines were not always carried forward if they were not seen to be useful to the NHS. Fiona Cairns asked if the phrase about CBT/GET being the first treatment of choice would be removed. While Professor Littlejohns and Dr Crawley could not predict what the guideline would say, Dr Crawley admitted that the phrase did not reflect the meaning intended by the guideline group and said she felt that the comments made by consultees would be taken on board. Professor Littlejohns was asked whether NICE would consider a second phase of consultation. He replied, "We have a process which we try to keep to. Occasionally we do move away from that process." The Chair suggested that NICE might wish to take some more time to consider how best to address some of the issues that had been raised. Professor Littlejohns said he would report the point back to the NICE Executive Committee, as he was not empowered to make that decision. 2. MINUTES OF THE LAST MEETING / MATTERS ARISING/OTHER BUSINESS i. As time was short, Dr Turner suggested that the following items be carried over to the next meeting: a. Mental Health Bill b. APPG Code of Practice This was agreed. ii. Cairan Farell asked if Mr Hutton had written to Dr Turner with details of any contractual penalties to which Atos Origin were subject. Dr Turner said he would follow up on this and report back to the next meeting. iii. Dr Shepherd asked if Dr Ian Gibson had made progress on the wording of an Early Day Motion (EDM). Dr Gibson's assistant, Sarah Vero, circulated a draft (attached). Dr Turner said the EDM would probably be tabled after Easter. v. Christine Harrison reported that on 15 February, the DWP had responded to the charities' joint statement on version 9 of DWP guidance, saying: "we are considering the final version of the ME/CFS guidance and will look at the level of detail contained therein. We expect to provide you with a fuller response by the end of April 2007." vi. Sarah Vero said that the Gibson Inquiry Group were interested in seeing if they could get the Standards Agency to look at conflict of interest eg. on occasions where advisers are representatives from insurance companies, psychiatrists etc. She asked people to contact her if they had already looked into this. vii. Paul Davis asked if Dr Turner could comment on a letter sent by the leader of the Kent Group. Dr Turner said he would follow up on this and respond in due course. viii. Doris Jones asked how best to ensure that representatives from the MRC, NICE etc would respond positively to invitations to meetings. Sara Vero suggested that invitations could be made through the APPG. 3. DATE OF NEXT MEETING To be confirmed. The meeting closed shortly after 2.45pm. Appendix Dr Ian Gibson's draft EDM This House recognises Myalgic Encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS; welcomes the Group on Scientific Research into ME's Report 'Inquiry into the status of CFS/M.E. and research into causes and treatment'; notes the Department of Health classification of ME as a neurological condition; calls on all government departments to accept this definition; calls for the implementation of nationally recognised clinical and research criteria which reflect the Dept of Health classification, similar to the guidelines used in Canada; calls for the collation of national epidemiological data of ME Patients based on this criteria; calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research; calls for massive further research into potential aetiology and treatments of ME. [Return to top] ------------------------------ Date: Sat, 5 May 2007 13:04:38 -0400 From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET> Subject: RES: The Fibromyalgia Bladder Index The Fibromyalgia Bladder Index. Clin Rheumatol. 2007 May 3; [Epub ahead of print] Brand K, Littlejohn G, Kristjanson L, Wisniewski S, Hassard T. Faculty of Communications, Health and Science, Edith Cowan University, Perth, Australia. PMID: 17476564 The aim of this study was to determine whether an existing outcome measure, the Interstitial Cystitis Symptom and Problem Index (ICSI/ICPI), is a valid, reliable, and clinically relevant instrument to assess the sensory urinary symptoms in women with fibromyalgia syndrome (FM). Ninety women with American College of Rheumatology 90 FM and who had at least two sensory bladder symptoms participated in the study. All underwent urological screening to exclude lower urinary tract pathology. All participants completed the following: ICSI/ICPI, Fibromyalgia Impact Questionnaire (FIQ), Medical Outcome Study Short Form 36, King's Health Questionnaire (KHQ), and Vulval Symptom Assessment Scale. Assessment was made for internal consistency reliability, test-retest reliability, and concurrent validity. Factor analysis was used to assess the internal structure of the scale. Factor analysis displayed two separate components of symptom and problem combinations as distinct from the original ICSI/ICPI developed for the interstitial cystitis population. The eight items of the index configured differently and formed two subscales of a newly developed Fibromyalgia Bladder Index. The two subscales of this index include the Bladder Urgency and Pain Subscale and the Bladder Frequency and Nocturia Subscale. This index has high internal consistency reliability (Cronbach's alpha coefficient of 0.81), test-retest reliability showing intraclass correlation of 0.85, and high concurrent validity through correlations between the Fibromyalgia Bladder Index and the KHQ (0.735, p = 0.000) and the FIQ (0.433, p = 0.000). This more specific configuration of the ICSI/ICPI better reflects FM bladder symptomatology. The Fibromyalgia Bladder Index is a validated FM-specific instrument that captures information about the sensory bladder symptoms and their impact in this fibromyalgia population. This instrument should allow for better understanding and management of this important fibromyalgia-associated problem. [Return to top] ------------------------------ Date: Sat, 5 May 2007 20:08:02 -0700 From: Steven Du Pre <isaiah40 SONIC.NET> Subject: NOT, ACT, MED: Media & Public Perception of Chronic Fatigue Syndrome Hello, Countless newspaper & magazines articles continue to appear using the word "fatigue" or "chronic fatigue" or "chronic fatigue syndrome" to mean a very transient condition from which one recovers easily. I say this because a public awareness campaign by CDC with "fatigue" in the name does not get us back to the serious neuroimmune disease which we know historically to be Myalgic Encephalomyelitis. The construct of "fatiguing illnesses" or "chronic fatigue syndrome" is a dead-end in regard to a valid perception of a serious neuroimmune disease, Myalgic Encephalomyelitis/CFS. And a public awareness campaign based on a very heterogeneous patient population according to the CDC criteria cannot rectify this situation. Witness this article regarding the "lemonade diet" cleanse which "helps chronic fatigue." in today's Sacramento newspaper: "Ted Damiecki, 55, of Bridgehampton, said he has gone on the cleanse twice and it has helped his chronic fatigue syndrome." "I've been all over the East Coast trying to find cures for chronic fatigue syndrome," he said. "I went on the cleanse and I felt better within four or five days." http://dwb.sacbee.com/24hour/healthscience/story/3611991p-12904392c.html Steven Du Pre Poetry website: http://www.angelfire.com/poetry/soareagle/index.html "By words the mind is winged." Aristophanes Website for National Alliance for Myalgic Encephalomyelitis: http://www.name-us.org [Return to top] ------------------------------ Date: Sun, 6 May 2007 17:43:15 +0200 From: Jan van Roijen <j.van.roijen CHELLO.NL> Subject: res: ME/CFS -not in the mind but in cell nucleus ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< >>>> 6 May 2007 <<<< Editorship : j.van.roijen chello.nl Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ nuclear factor kappa beta is in this electronic version written as: NFkB ~jvr ```````````` http://www.michaelmaes.com/ Prof. Dr. M. Maes Belgium - USA LATEST NEWS AND UPDATES April 2007: New publication in press: CHRONIC FATIGUE SYNDROME: NOT IN THE MIND BUT IN THE CELL NUCLEUS. For decades, CFS patients were - and still are - dismissed as lazybones or hypochondriacs. Since 1994, the baffling illness has received recognition by the introduction of diagnostic criteria [the CDC criteria]. Many medical doctors and insurance companies still assert that CFS is a mental condition. The mainstream treatment for CFS is cognitive behavioural therapy, which means that patients with CFS are being treated as having a mental illness with "treatments" that do not treat any underlying cause. Doctors who treat CFS patients as suffering from an organic disorder and scientists who examine the biological causes of CFS are often considered quacks by their colleagues, insurance companies and anti-quack societies, which sometimes are even officially supported by governments (eg the Dutch government) in their attempts to eliminate the scientific view that CFS is an organic disorder. The official acceptance of the latter obviously would mean that the national health care systems are obliged to financially support those patients who now are considered hypochondriacs and, therefore, may easily be suspended from the national health care systems. There is, however, evidence that CFS is a severe immune disorder with inflammatory reactions and increased oxidative stress, which has caused a significant damage to functional lipids and proteins in the cells. Maes et al (2007), in a new published study, show that patients with CFS show very high levels of nuclear factor kappa beta (NFkB) in their immune cells. NFkB is the major mechanism which - in the cell - regulates inflammation and oxidative stress. Thus, the increased production of NFkB in the white blood cells of patients with CFS is the cause of the inflammation and oxidative stress which reportedly occurs in CFS. Maes et al. also report that the high levels of NFkB predict more severe symptoms, such as aches and pain, muscular tension, fatigue, irritability, sadness, and the subjective feeling of infection. Maes and coworkers show that inflammation and oxidative stress may cause aches and pain, muscular tension, fatigue, and sadness. Phrased differently, the increased production of NFkB may cause chronic fatigue and the key symptoms of this illness. Maes et al. assert that the factors which increase the production of NFkB are also causes of CFS. Thus, viral infections, bacterial infections, leaky gut, psychological stress and physical exhaustion are all able to increase the production of NFkB and are known trigger factors for CFS. In other words, NFkB functions as a "smoke sensor" which detects threats to the body such as viral and bacterial infections, leaky gut, psychological stress and physical exhaustion, and it acts as a switch to turn inflammation and oxidative stress on and off in the cell and, consequently, may cause CFS when the above threats are severe enough or have become chronic. Finally, the findings of Maes et al. open new vistas in the treatment of CFS: new drug development in CFS should target NFkB. Maes et al. Neuroendocrinology Letters, 2007. ```````````````````````````````` April 2007: We report new results on severe immune dysfunctions in CFS. There is some evidence that patients with chronic fatigue syndrome (CFS) suffer from immune abnormalities, such as immune activation and decreased immune cell responsivity upon polyclonal stimili. ` This study was designed to evaluate lymphocyte activation in CFS by using a CD69 expression assay. CD69 acts as a costimulatory molecule for T- and natural killer (NK) cell activation. We collected whole blood from CFS patients, who met CDC criteria, and healthy volunteers. The blood samples were stimulated with mitogens during 18 h and the levels of activated T and NK cells expressing CD69 were measured on a Coulter Epics flow cytometer using a three color immunofluorescence staining protocol. The main finding of this study is that the expression of the CD69 activation marker on the T cell and natural killer cell surface of patients with CFS is significantly lower than in normal volunteers. The test can be used as an external validating criterion for the clinical diagnosis of CFS. In particular, the stimulated expression of the CD69 molecule on the CD45+CD56+ and also on the CD3+CD8+ T cells yielded a good diagnostic performance (better than the CD69 expression on the CD3+ and CD3+CD4+ T cells). Our results are also in agreement with previous reports that the ex vivo proliferative response of lymphocytes to mitogens is significantly decreased in CFS. Another finding of this study is that - in CFS - the stimulated expression of the CD69 molecule is significantly and negatively related to signs of inflammation, suggesting that the above defects in early T cell activation are caused by the inflammation in CFS. Since induction of CD69 surface expression is dependent on the activation of the protein kinase C (PKC) activation pathway, it is suggested that in CFS there is a disorder in the early activation of the immune system involving PKC. [Return to top] ------------------------------ Date: Mon, 7 May 2007 14:18:19 -0400 From: "Bernice A. Melsky" <bernicemelsky@VERIZON.NET> Subject: RES: The prevalence of fibromyalgia in Japanese workers The prevalence of fibromyalgia in Japanese workers. Scand J Rheumatol. 2007 Mar-Apr;36(2):140-4. Toda K. Department of Rehabilitation, Hiroshima Prefectural Rehabilitation Centre. Hiroshima, Japan. PMID: 17476621 Objective: To estimate the point prevalence of fibromyalgia (FM) among hospital workers and to make a list of the reported FM prevalence using the classification criteria of the American College of Rheumatology (ACR) for FM. Methods: Three hundred and forty-three females and 196 males were surveyed using the 1990 ACR classification criteria of FM. The subjects were staff workers and non-staff workers (such as floor sweepers and personnel of pharmaceutical companies) who worked in medical institutions. Results: One hundred and six of the 343 females (30.9%) and 34 of the 196 males (17.3%) had complained of widespread pain for at least 3 months. All subjects who had complained of widespread pain for at least 3 months were examined by one experienced physician. Seven of the 343 females (2.04%) and one of the 196 males (0.51%) met the ACR criteria for FM. All of these eight subjects had seen a physician after the occurrence of widespread pain. Four of the eight subjects with FM had seen a physician in the past year. Only one subject had been diagnosed with FM before this study. Conclusion: The advantage of this study was the extremely low dropout rate. FM is a common musculoskeletal disorder among Japanese adult workers, especially among female workers. [Return to top] ------------------------------ Date: Mon, 7 May 2007 21:29:32 +0200 From: Jan van Roijen <j.van.roijen CHELLO.NL> Subject: act,med: Make September Polio Awareness Month ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< >>>> 7 May 2007 <<<< Editorship : j.van.roijen chello.nl Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ Margaret Williams writes: OVERLAP OF ME/CFS WITH POST POLIO SYNDROME Prestigious papers, for example, Annals of the New York Academy of Sciences 1995 (containing 50 papers on clinical neurology, neuroscience, electrophysiology, brain imaging, histology, virology, immunology, epidemiology, with contributors from the US, Australia, Canada, France, Sweden and the UK) point out the similarities between post-polio syndrome and ME/CFS, notably that the mechanism of the extreme fatigue (called "visceral exhaustion") --is exactly the same in ME/CFS as in PPS. In the Journal of IiME-Volume1-Issue1 http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf ~jvr `````````````````````` From: Bruno, Dr. Richard L. <Richard.Bruno@ehmc.com> Make September Polio Awareness Month... International Post-Polio Task Force at Englewood Hospital and Medical Center Englewood, New Jersey USA 07631 201-894-3724 877-POSTPOLIO firstname.lastname@example.org PostPolioInfo.com/PostPolio As you know, Congress has proclaimed 2007 the "YEAR OF POLIO AWARENESS." I am writing to ask you to help polio survivors and all children by having September 2007 proclaimed POLIO AWARENESS MONTH. There are two areas about which everyone needs to be aware: Polio Vaccination Awareness: In the past two years, polio has been reported in five unvaccinated Minnesota children and in one unvaccinated Arizona adult. Unfortunately, the polio vaccine has been a victim of its own success, allowing parents to think that polio is "cured" and vaccination unnecessary. It is feared that the recent US polio cases are canaries in the mineshaft. The CDC reports that 10% of US toddlers under 3 years old -- one million children -- are not vaccinated against polio, with vaccination lowest in poor cities. The appearance of polio in the U.S. again is especially frightening since polio has broken free of international vaccination efforts, with cases increasing in 2007 in India, Africa and appearing in previously polio-free countries, such as Namibia. Even more frightening, not everyone infected with the poliovirus exhibits symptoms. For every case of paralytic polio, there are between 70 and 200 "silent carriers" of the poliovirus. What will happen when a polio-infected individual from a foreign country lands in a densely populated city like New York, where an estimated 23,000 toddlers are unvaccinated? Every child must be vaccinated since America's next polio epidemic could be just a plane ride away. Even more disturbing, 19 states now offer not just religious exemptions, but "philosophical exemptions," to vaccination. Arkansas' recent passage of legislation allowing "philosophical exemptions" was followed by a 26% drop in vaccinations. States should not allow "philosophical exemptions" to polio vaccination at the same time polio has broken free of international vaccination efforts. Post-Polio Sequelae Awareness: In taking about polio vaccination, it should not be forgotten, as it was 50 years ago, that there are still nearly two million North Americans alive today who had polio during the epidemics of the 1940's, 50's and early 60's. At least 70 percent of paralytic polio survivors and 40 percent of nonparalytic polio survivors are developing Post-Polio Sequelae, unexpected and often disabling symptoms that occur about 35 years after the poliovirus attack, including overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing. Unfortunately, polio survivors and health professionals are not aware that PPS exist and are readily treated by reducing physical overexertion, "conserving to preserve" polio survivors' remaining poliovirus-damaged neurons, and not by exercising and the "use it or lose it" treatment polio survivors received 50 years ago. Polio survivors and health professionals need to be aware of the cause and treatment of PPS. Please go to: PostPolioInfo.com/PostPolio, click on GOVERNORS LIST and call your governor's office. Ask for the person in charge of proclamations and please FAX that person a copy of the letter below (also posted our web site) with your signature, asking your governor to proclaim September 2007 Polio Awareness Month, as polio survivors in Montana have already done. Please let me know if your governor signs a proclamation. As always, I appreciate your help and our working together to make Polio Awareness Month a reality. Yours truly, Dr. Richard L. Bruno Chairperson, International Post-Polio Task Force and Director, The Post-Polio Institute and International Centre for Post-Polio Education and Research Englewood Hospital and Medical Center `````````````````````````` Dear Governor: Congress has proclaimed 2007 the "YEAR OF POLIO AWARENESS." I ask that you proclaimed September 2007 POLIO AWARENESS MONTH. Polio Vaccination Awareness: In the past two years, polio has been reported in five unvaccinated Minnesota children and in one unvaccinated Arizona adult. Unfortunately, the polio vaccine has been a victim of its own success in the US, allowing Americans to think that polio is "cured" and that vaccination unnecessary. These US polio cases may be canaries in the mineshaft. The Centers for Disease Control reports that <I>10%<I> of US toddlers under 3 years old -- <I>one million children<I> -- are not vaccinated against polio, with vaccination lowest in poor areas. The appearance of polio in the U.S. is especially frightening since polio has broken free of international vaccination efforts, with cases increasing in 2007 in India and Africa. Equally frightening, not everyone infected with poliovirus shows symptoms. For every case of paralytic polio, there are between 70 and 200 "silent poliovirus carriers." What will happen when a polio-infected individual from a foreign country lands in a densely populated city like New York, where an estimated 23,000 toddlers are unvaccinated? Every child must be vaccinated since America's next polio epidemic could be just a plane ride away. Post-Polio Sequelae Awareness: In promoting about polio vaccination, it should not be forgotten, as it was 50 years ago, that there are still nearly two million North Americans alive today who had polio during the epidemics of the 1940's, 50's and early 60's. At least 70 percent of paralytic polio survivors and 40 percent of nonparalytic polio survivors are developing Post-Polio Sequelae, unexpected and often disabling symptoms that occur about 35 years after the poliovirus attack, including overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing Unfortunately, polio survivors and health professionals are not aware that PPS exist and are readily treated by reducing physical overexertion and "conserving to preserve" polio survivors' remaining poliovirus-damaged neurons, and not by exercising and the "use it or lose it" treatment polio survivors received 50 years ago. Polio survivors and health professionals need to be aware of the cause and treatment of PPS. On behalf of our state's thousands of polio survivors and all of our children, I ask that you proclaimed September 2007 POLIO AWARENESS MONTH. Yours truly, NAME CITY, STATE [Return to top] ------------------------------
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