Every diagnosis of `CFS' can only ever be a misdiagnosis...", Reference link: Who benefits form ‘CFS’ and ‘ME/CFS’ by Jodi Bassett and Lesley Ben, on HFME. is the same thing as CFS and chronic fatigue and this is good somehow???? Notice how now all the US press and government is ALL about "CFS/ME" and "ME/CFS", this gives them another brick in the wall of mixing it all up into a big confusing ball that helps no patients at all.”, “If the WPI study is right, then that means there are 10 million HEALTHY PEOPLE with XMRV infections in the US alone! After three tumultuous years, the final act in the drama came on 18th September 2012 with the publication of the results of a multicentre study coordinated by Columbia University’s Prof. Ian Lipkin. Chronic-fatigue paper called into question. Now I am under the opinion that the technology for demonstrating HHV 6 & 7 may be under copyright to a USA laboratory. Knowing these facts about the history and invention of the CFS label can help us to view even the most current research in its appropriate context. So, as well as being the first to show infection with this novel virus in ME/CFS patients, the researchers appeared to have been the first to be able to isolate XMRV particles from the blood, and to show direct transmission of this virus between blood cells — dramatic observations indeed. Heck, some of the people in the group may have had diabetes too, but it doesn't mean that XMRV is related to diabetes too. Bunch of crap, and I am so tired of people NOT  GETTING IT. It is my belief that the US laboratory which sponsored this Symposium has the copyright of this test. “They have the fake CFS definition and "subgroups" that they can use to "fail to replicate" the findings, even if that virus is a big deal (for one of the patient groups studied). We should be concerned with how an illness is defined. Collectively, these suggested that XMRV might have originated from the chance recombination of mouse viruses during laboratory experiments, with positive findings reflecting cell-line contamination rather than true infection in humans (see the Wall Street Journal). However, one investigation (Lo et al, 2010), instead of finding XMRV itself, detected a more diverse group of closely related murine leukaemia viruses (MLV) in 86.5% of patients compared with 6.8% of controls. groups and individuals (Prohealth, Phoenix, CAA etc.) by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Charity number SC036942, About us The controversy brought a new focus that will drive efforts to understand CFS/ME and lead to improvements in diagnosis, prevention and treatment.”, ME Research UK For more information on why ME and CFS are not the same, and why CFS research is not the same as ME research etc. Dr. Mikovits discovered that 67% of women affected with CFS carried a mouse virus–called XMRV– Xenotropic Murine Leukemia related Virus–that appeared in healthy women only 4% of the time. patient group. The Independent newspaper in the UK) are wrong. "There is no such disease(s) as CFS. © 2012 Elsevier Ltd. All rights reserved. Lots of them do. CFS is only "medically unexplained fatigue". It probably affects M.E. Because of that, we look at this kind of research with a different eye, and try to see beyond the headlines and see what it will really mean for M.E. But as it turned out, even though yes it happens in M.E. justifying "CFS" as always having a physical cause. XMRV was first linked to CFS in a study published in October 2009, where blood samples from chronic fatigue syndrome patients were found to have traces of … Please redistribute this text widely. Overall, an upregulated RNase L pathway in ME/CFS is consistent with an activated immune state and a role for persistent viral infection in the pathogenesis of the disorder — and it is because of these and other findings that many researchers have come to view ME/CFS as primarily a disorder of the innate immune system (see Klimas and Kineru, 2008). It does not propose to have all the answers, but will endeavor to refer you to appropriate and accurate resources when necessary. The WPI and CAA are going around giving interviews. On the 07 and 08 of September 2010, the first international XMRV conference took place at the National Institutes of Health. (USA proposed centers) - Whittemore Peterson Institute. The term M.E. It is the same group of viruses associated with the M.E. The Cause of CFS is Human Herpes Viruses 6 & 7: In June 2008 I was paid by the Swiss pharmaceutical company, ROCHE to attend a symposium on CFS in Baltimore, Maryland. Please note the following, clarifying points that patients and patient advocates have mentioned in reference to the latest retrovirus study. Since the WPI researchers used samples selected from several regions in the US where “outbreaks of CFS” had been documented (using patients diagnosed on CDC-1994 and 2003 Canadian Clinical criteria), blood samples from patients in other countries (possibly diagnosed with less stringent criteria) might throw up very different results. The XMRV virus study clearly documents that CFS is a real and physical illness, again proving that those who abuse patients by implying that the disease is … What caught the attention of the scientific world is that these observations seem to fit neatly, at least at a first glance, with what is already known about ME/CFS as a chronic illness. and fatigue syndromes. It will possibly bring them in many millions of dollars from, patients willing to be separated from their assets, generous charities and governments before the retrovirus theory is once again thrown into the garbage bin. He too stated that he found conclusive evidence that the cause of CFS was HHV 6 & 7. The extent of this difference in proportions is unusual, as it is the norm for scientific researchers to find relatively small yet significant differences between patients and closely matched control groups; in the modern world, novel associations of such magnitude are rarely found between long-standing chronic illnesses and infectious agents. According to the latest CDC estimates, 2.54% of the population qualify for a `CFS' (mis)diagnosis. Are such researchers investigating people who are simply fatigued healthy people? 7% of healthy controls. This website uses cookies to improve your experience while you navigate through the website. There is so much evidence supporting the facts of M.E., why are so many content for this to be ignored again and again? There is no money to be made with this virus since there is no patent on it and it is difficult to recover. Please read this brief paper to find out WHY. However, the article did not say Mikovits et al had found a cause, only that they had found an `association.' group. Maybe. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. While many are touting this as a huge medical breakthrough, or even claiming that 'our battle is over' there is a group of doctors, scientists, patients and advocates who question why this research is being said to apply to M.E., when the patients studied merely qualified for a 'CFS' misdiagnosis and who view this information and the claims made about it with tempered enthusiasm or even significant concern and worry.

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