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Startat av Mayordomo, 2008-11-28, 12:41
CitatRun by three exercise physiologists, Dr. Christopher. Snell (Ph.D), Dr. MarkVan Ness (Ph.D) and Staci Stevens (M.A.), a former grad student and now a researcher with chronic fatigue syndrome (ME/CFS), the lab focuses on a very basic and still very misunderstood aspect of CFS – why patients have so much trouble with exercise.
CitatThe other side, exemplified in the Center for Disease Control's (CDC) empirical definition of 2005, believes that post-exertional malaise (PEM) is one of many symptoms present in the disease. They argue that the most important feature of the disease is unexplained degrees of 'unwellness' that interfere significantly with people's work, personal, social, etc. activities. They believe some different process is at work. The Pacific Fatigue Lab's results suggest that the Canadian Consensus group is correct; during either the first or second exercise test a large subset of patients demonstrates significant physiological abnormalities in their ability to produce energy. Another subset of patients does not. The Lab's findings suggest that these two groups should be separated in research studies.
CitatThe chronic fatigue syndrome (ME/CFS) research world is catching onto the implications of the Pacific Fatigue Lab's work. A repeat exercise study by Ellie Stein in Canada recently opened and one is reportedly underway in Europe. Ms. Stevens readily acknowledged that replicating results has been difficult in ME/CFS, but she's confident that their results will hold up. She's done 1,000's of single cardiopulmonary exercise tests on chronic fatigue syndrome (ME/CFS) over the years and close to a hundred with the Stevens' Protocol at the Pacific Fatigue Lab. Whether in Stockton, Stanford, Incline Village or Ithaca, New York they see the same general pattern again and again, a unique metabolic dysfunction that characterizes and objectifies the most mystifying symptom in the disease, post exertional malaise.
CitatWhittemore hopes to provide care to CFS patients at the Center for Molecular Medicine at the Whittemore Peterson Institute, which she partially funded with $5 million. The $86 million Center will be located at the University of Nevada, Reno and is scheduled to open next year. Not only will it serve CFS patients, but it will also serve other patients with various neuroimmune and inflammatory diseases, such as myalgic encephalomyelitis, fibromyalgia, atypical multiple sclerosis, autism, and other related illnesses.
CitatNow, Judy Mikovits and her colleagues at the Center have developed a diagnostic blood test which measures five cytokines and chemokines that can be used to confirm a diagnose CFS.Research projects also uncovered the fact that treating CFS patients with anti-viral drugs has greatly reduced symptoms.
CitatCan people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it's like to be disliked by people you're trying to help
CitatSimon Wessely trained in epidemiology at the London School of Hygiene and Tropical Medicine and psychiatry at Maudsley Hospital in London. He founded the Chronic Fatigue Syndrome Research and Treatment Unit at King's College London and the first specialist NHS clinic for CFS at what is now King's College Hospital. He now focuses on military health and terrorism psychology, and is an adviser to the UK's Home Office and Ministry of Defence.
CitatRecommendations that two controversial treatments – cognitive behaviour therapy (CBT) and graded exercise treatment (GET) – be offered as front-line treatments for those with mild to moderate forms of the illness remain unchanged.This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT – while 56% reported that GET made them feel worse.
CitatTo the U.S. Centers for Disease Control and Prevention (CDC)Input to the CDC Stakeholders' Meeting on CFS Strategic Research Plan, April 27, 2009 ( http://cdc.gov/cfs/meetings/2009_04.htm ): I would like cohorts for research to be more specific and homogeneous. To speed up biomedical ME research it is important to subgroup and stratify patients. Use databases from which "profiles" of patients can be derived. To reduce cost for stratification it is a good idea with a database where testresults from scientific studies and from the patients regular care are stored. Then it will be possible to stratify upon these data when performing a scientific study. That is the way to go ahead, I think.A tissue bank with speciemens from in vivo and post mortem would be a great resourse for ME-research. The tissue samples could be coupled with the database in order to make it possible to have a well defined "profile" of the patient from which the tissue was drawn.I have written a few documents where I present some ideas of reducing cohort heterogenity in order to speed up biomedical research into ME. These documents can be acessed via the links at the end of this text.To summarize the ideas:• Exclude ME from the CFS cohort, with the purpose of reducing the heterogenity of the CFS cohort.• Use a defintion for ME with where the symptom of post-exertional malaise after mental or physical exertion lasting 1-3 days or longer is mandatory.• Use the ME definition and the CFS-Fukuda in parallell for a period of time, in order to keep comparability with past research./Kasper Ezelius, Örebro, Sweden, Europe-------------------Documents in chronological order: Use the Canadian criteria 2003 for CFS in the USA. Kasper Ezelius. June 22, 2008: http://me-cfs.se/dok/080622-Use-Canada-criteria-in-USA.pdfLetter to the President and Congress of the United States of America, U.S. Department of Health and Human Services, U.S. National Institutes of Health, and U.S. Centers for Disease Control.Resolution in order to make cohorts less heterogeneous. Kasper Ezelius. 1st of September 2008: http://me-cfs.se/dok/080901-mod-cfs.pdfResearch into CFS (Chronic Fatigue Syndrome) and ME (Myalgic Encephalomyelitis) has been blurred through many decades due to heterogeneous patient populations (cohorts). One problem is that researchers, as well as clinicians, have different interpretations of what is CFS. Some researchers/clinicians would (incorrectly) not set a CDC CFS diagnosis if post-exertional malaise is not present, although the CDC CFS definition does not require post-exertional malaise.How to categorize ME and CFS. Kasper Ezelius. 23 October 2008: http://me-cfs.se/dok/081023-categorize.pdfThis document is a brief sketch for further discussion on how to proceed with taxonomy in research related to Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).CFS is no longer CFS, and it was never ME. Kasper Ezelius. 5 December 2008: http://me-cfs.se/dok/081205-cfs-no-longer-cfs.pdfThe Centres for Disease Control and Prevention in the USA has adopted a more including criterion for chronic fatigue syndrome which is important to be aware of when reading scientific papers. It is important to know that the new criteria is so much "loosened up" that it encompasses 2,5% of the general population instead of around 0,4% as with the earlier criteria. How to stratify and group patients in future research is proposed. The use of disjoint sets of patients is encouraged.
CitatWe express concern over the CDC's unilateral change in inclusionary diagnostic criteria for patients with CFS. In recent years, the CDC has broadened its definition of CFS and, in so doing, has raised its estimate of the number CFS patients within the United States from approximately 1 million to 4 – 6 million. We caution the CDC, and express our concern, that by altering the inclusionary criteria for CFS, the previously accumulated population data is no longer compatible with the current CDC data. It is our preference that the CDC adopts the increasingly more popular & scientifically well received Canadian case definition for its current and planned 5-year strategy.