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  • Complaint Against UK Medical Research Council
    MRC refused to fund the work of Dr Jonathan Kerr of St George s hospital London despite the recognition by peers of the world class research which Dr Kerr was performing Given that biomedical research including gene research which has shown that in people with ME CFS there are more gene abnormalities present than are found in cancer sufferers has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME CFS nowhere could such criticism be more appropriate than in relation to the PACE Trial Professor Malcolm Hooper Emeritus professor of medicinal chemistry at Sunderland university has made a formal complaint to the Minister of State responsible for the Medical Research Council A 442 page report under the title Magical Medicine How to Make a Disease Disappear has also been produced detailing the failings of the Medical Research Council and specifically the PACE trials The report addresses the background to the MRC PACE Trial on CFS ME the biomedical evidence that disproves the assumptions of the MRC trial Principal Investigators the many extremely disturbing issues surrounding the PACE Trial and illustrations from the Manuals used in the trial The document contains the background to

    Original URL path: http://euro-me.org/news-Q12010-002.htm (2016-04-27)
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  • European ME Alliance - Invite to Chief Medical Officers to London 2010
    to make as many as possible aware of the need for change The letter of invitation is as follows Dear Minister The European ME Alliance is a grouping of European organisations that are involved in supporting patients suffering from myalgic encephalomyelitis ME or ME CFS and are campaigning for funding for biomedical research to provide treatments and cures for ME The alliance was formed in 2008 and now consists of national charities and organisations from Belgium Denmark Germany Ireland Norway Spain Sweden Switzerland and the UK On 24th May 2010 one of our member organisations Invest in ME in the UK is organising and hosting a major biomedical research conference in Westminster London the 5 th Invest in ME International ME CFS Conference 2010 A New Era in ME CFS Research Present at the event will be leading experts presenting the latest biomedical research into ME CFS and information valuable to healthcare professionals in diagnosing and treating ME CFS The European ME Alliance will be meeting in London at the same time and we would like to invite you to attend a special meeting of all European Chief Medical Officers or equivalents to be held on the Sunday prior to the conference on 23rd May in London We hope to have the presenters at the conference also present This will be a unique opportunity for Europe s medical officers to discuss the latest research into an illness that affects many millions of Europeans ME CFS is a debilitating neurological illness classified as such by the World Health Organisation under ICD 10 G93 3 Our aim is to bring together a European lobby of groups to campaign for funding of biomedical research to establish an understanding of the aetiology pathogenesis and epidemiology of ME CFS This should lead to the development

    Original URL path: http://euro-me.org/news-Q12010-003.htm (2016-04-27)
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  • Sweden - XMRV Replication Study Funded by IMET
    DNA from the XMRV virus could be detected in the peripheral blood mononuclear cells of over two thirds of ME CFS patients samples from the blood bank in the Whittemore Peterson Institute Tissue Repository but in less than 4 of healthy control samples The researchers also reported that XMRV proteins were being expressed in blood cells from ME CFS patients at very high levels compared with controls and that patient derived XMRV was infectious and transmissible It is now necessary for other independent laboratories to replicate these findings in their own local populations of ME CFS patients 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 Canadian Clinical Criteria 2003 blood samples from patients in other areas or other countries might throw up very different results Will ME CFS samples from other regions of the US show similar high rates of positivity What about European samples This replication study aims to establish whether XMRV nucleic acid can be found in peripheral blood mononuclear cells plasma and serum of Swedish patients and controls The researchers will retrospectively test previously stored patients samples 20 Fukuda defined ME CFS 20 fibromyalgia 20 irritable bowel and 20 controls In addition they will prospectively test samples from 120 ME CFS defined on the Fukuda 1994 and the Canadian 2003 criteria similar to patients in the original 2009 report in Science who will also have functional assessments The investigators conducting this research are Prof Jonas Blomberg is head of The Research Group of Clinical Virology at the University of Uppsala and his research interests include human endogenous retroviruses the links between endogenous retroviral sequences ERVs of the human genome and diseases such as multiple sclerosis and schizophrenia and

    Original URL path: http://euro-me.org/news-Q42009-004.htm (2016-04-27)
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  • European ME Alliance - News Norway - National Health Institute on XMRV
    prevention and treatment of disease On 8 October the renowned scientific journal Science announced that a group of American researchers has found genetic material DNA from a virus in white blood cells in a group of patients with chronic fatigue syndrome or myalgic encephalomyelitis ME 68 of 101 67 patients who were included in the survey had the virus while only 8 of 218 3 7 healthy controls had it The researchers also found that the white blood cells from patients could transmit the virus to a cell culture of other white blood cells We think this is a very interesting discovery says director Geir Stene Larsen If this virus is contributing to some people developing ME it may have great significance for the possibilities to prevent and treat the illness But it is important to emphasise that this is still at a research stage The U S study was small only 101 patients and there still remains much research to be done before we can draw some conclusions about the effect the virus has on the development of ME But this is a field of research which we will follow with great interest the future he says Stene Larsen

    Original URL path: http://euro-me.org/news-Q42009-003.htm (2016-04-27)
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  • European ME Alliance - Press Release October 2009
    members of EMEA recognise that the staff at WPI are performing research of the highest quality The publication of this research in Science magazine is itself an amazing achievement This work has been achieved in an amazingly short period of time and the tenacity dedication and sheer excellence of the WPI has brought hope to millions of people patients carers and friends in Europe and further afield EMEA announces its

    Original URL path: http://euro-me.org/news-Q42009-002.htm (2016-04-27)
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  • European ME Alliance - Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with ME/CFS
    7 of 218 healthy subjects tested were positive for the virus Abstract Chronic fatigue syndrome CFS is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide Studying peripheral blood mononuclear cells PBMCs from CFS patients we identified DNA from a human gammaretrovirus xenotropic murine leukemia virus related virus XMRV in 68 of 101 patients 67 compared to 8 of 218 3 7 healthy controls

    Original URL path: http://euro-me.org/news-Q42009-001.htm (2016-04-27)
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  • European ME Alliance - News Items Dr. John Chia's new research on enteroviruses and ME 2009
    same geographic areas within a three week period Virologic studies include viral RNA detection in stool samples and staining for enterovirus protein by immunoperoxidase technique of the resected intestines A new mechanism for intussusception associated with enterovirus is proposed Tap

    Original URL path: http://euro-me.org/news-Q32009-001.htm (2016-04-27)
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  • European ME Alliance - News Items Q1 2009 - UK NICE GUIDELINES - JUDICIAL REVIEW
    patients this is a pyrrhic victory The fact that yet another group of patients have forced NICE to have to defend its policies and guidelines guidelines meant to make the lives of those same patients better shows how flawed the NICE organisation is and how little trust patients have in its approach and its conclusions This is from the Invest in ME web site following the the Judicial review of

    Original URL path: http://euro-me.org/news-Q12009-001.htm (2016-04-27)
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