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  • European ME Alliance - News March 2013 - Invest in ME Conference Events
    with the Alison Hunter Memorial Foundation of Australia and assisted especially by EMEA Sweden member RME A pre conference dinner carries on the collaborative meeting to allow researchers and participants to network and create more opportunities for cooperation The 8th Invest in ME International ME Conference in London on 31 st May will allow a platform for the latest initiatives occurring in biomedical research into ME from different continents demonstrating

    Original URL path: http://euro-me.org/news-Q12013-002.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance Petition to the European Parliament 2012
    and late stage AIDS regarding quality of life and suffering We therefore request the following to respect the WHO ICD 10 Code G93 3 for ME as a neurological disease and ensure that the Member States implement this in their Health Care System to respect the rights of ME patients including children in all Member States to endorse as diagnostic criteria for ME the Canadian Consensus Criteria and the developing International Consensus Criteria to encourage the development of biomedical research An estimated 1 200 000 very sick ME patients in Europe are waiting for parliament to recognise the WHO ICD 10 Code G93 3 References 1 www who int classifications icf G93 3 Postviral fatigue syndrome Benign myalgic encephalomyelitis ME 2 Carruthers B Jain AK De Meirleir KL Peterson DL Klimas NG Lerner AM Bested AC Flor Henry P Joshi P Powles AP et al Myalgic encephalomyelitis chronic fatigue syndrome clinical working case definition diagnostic and treatment protocols Journal of chronic fatigue syndrome 2003 11 1 7 115 3 Carruthers BM van de Sande MI De Meirleir KL Klimas NG Broderick G Mitchell T et al Myalgic encephalomyelitis International Consensus Criteria J Intern Med 2011 270 327 38 4 Nacul LC Lacerda EM Campion P Pheby D Drachler MD Leite JC Poland F Howe A Fayyaz S Molokhia M The functional status and well being of people with myalgic encephalomyelitis chronic fatigue syndrome and their carers BMC Public Health 2011 11 1 402 5 J Mark Van Ness Staci R Stevens Kylie T Kumasaka Harnoor Singh Betsy Keller Daniel L Peterson Jose Montoya and Christopher R Snell A diagnostic test for the identification of metabolic dysfunction Conference abstract 9th IACFS ME clinical and research conference Reno March 7 2009 6 Brown M M Bell D S Jason L A Christos C and Bell D E 2012 Understanding Long Term Outcomes of Chronic Fatigue Syndrome J Clin Psychol 68 1028 1035 doi 10 1002 jclp 21880 7 Twisk F N Maes M 2009 A review on cognitive behavioral therapy CBT and graded exercise therapy GET in myalgic encephalomyelitis ME chronic fatigue syndrome CFS CBT GET is not only ineffective and not evidence based but also potentially harmful for many patients with ME CFS Neuro Endocrinology Letters 30 3 284 299 8 KCE report Evaluation of CBT GET therapy https kce fgov be nl SGREF 5268 CREF 11648 9 Fluge Ø Bruland O Risa K Storstein A Kristoffersen EK et al 2011 Benefit from B Lymphocyte Depletion Using the Anti CD20 Antibody Rituximab in Chronic Fatigue Syndrome A Double Blind and Placebo Controlled Study PLoS ONE 6 10 e26358 doi 10 1371 journal pone 0026358 10 Maes M Twisk FN Chronic fatigue syndrome Harvey and Wessely s bio psychosocial model versus a bio psychosocial model based on inflammatory and oxidative and nitrosative stress pathways BMC Med 8 35 11 Broderick G Fuite J Kreitz A Vernon SD Klimas N Fletcher MA A formal analysis of cytokine networks in chronic fatigue syndrome Brain

    Original URL path: http://euro-me.org/news-Q42012-001.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance DSM-5 June 2012 - Submission to DSM-5
    against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME and the promotion of false perceptions about the disease to the public healthcare authorities and government It is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science vested interests or which do not serve the patients It is the patients who must surely be the priority in all healthcare provision We are especially concerned about the criteria described in the new category of Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and misattributes their symptoms could be given this label Who decides when someone misattributes their pain or fatigue How are these symptoms measured How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer In the SSD Criteria B there are terms used which are subjective and not measurable such as health concerns and catastrophising Based on our collective experiences with the treatment of an organic illness such as ME experiences across Europe and Australia our concern is that there is a great danger of mis or missed diagnoses when looking at this category and its proposed diagnostic criteria The criteria are very vague and allow too much subjectivity In fact ME could mistakenly be placed in this category if one were to ignore or be unaware of the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad SSD criteria to diagnose Such an action

    Original URL path: http://euro-me.org/news-Q22012-001.htm (2016-04-27)
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  • European ME Alliance - Falling back to the Dark Ages – EMEA’s statement concerning the new German guideline on “tiredness”
    the CCC and by false translation maintain that the CCC would describe a state of tiredness The guideline causes harm to people with ME CFS The false description of ME CFS has profoundly damaging effects on patients The guideline is an instruction for systematically misdiagnosing ME CFS as a depression or another mental disorder If a physician follows the instructions of that guideline he will inevitably misdiagnose ME CFS and not realise that it is an organic disorder Consequently the patients will be referred to psychiatrists and will be forced to undergo activation therapy in psychosomatic clinics leading to further damage As a consequence of this blaming the patient strategy patients will be denied social benefits The guidelines support the unsubstantiated prejudice that patients have a self inflicted behavioural disorder Illness is redefined as deviance and physical activation is declared as the magic bullet Patients who are not able to follow the treatment regime are blamed for the persistence of their disease The patients plight is perpetuated Thus the new German guideline will greatly contribute to the perpetuation of the plight of ME CFS patients in Germany Instead of providing information on the devastating effects of this disease it is depicted and belittled as an extreme state of tiredness Instead of providing guidance for an appropriate diagnosis and management of ME CFS both physicians and their patients are misled Instead of reflecting the state of the art the guidelines spread the unsubstantiated myths of the Wessely school Instead of differentiating between states of fatigue and the distinct disease entity ME CFS they mix everything together in an attempt to make the disease disappear Instead of following the example of the Norwegian health minister who recently officially apologized to the ME CFS patients for decades of neglect and mistreatment and who retracted the respective guideline the authors of the German guideline chose to perpetuate this very neglect and mistreatment Patients protest in the strongest terms against the German Leitlinie Müdigkeit On being presented with the new German guidelines t he European ME Alliance protests in the strongest terms against the revised German Leitlinie Müdigkeit The guideline grossly neglects the obligation to exercise medical diligence to an extent that might even be indictable according to German law The guideline s treatment recommendations for ME CFS are an instigation to deliberate and grossly negligent physical injury The guideline violates in many respects the code of medical ethics which stipulates the obligation for advanced vocational training the obligation to care for patients with appropriate diagnostic and treatment approaches and which forbids unreasonable promises of cure We ask the persons and institutions in charge to immediately withdraw this Leitlinie Müdigkeit and to issue guidelines for ME CFS which reflect the state of medical art Further we ask that they drop the unreasonable myths of the Wessely school and the biopsychosocial model which even the Wessely school itself now state are not appropriate for ME CFS And we ask them to take into consideration the vast

    Original URL path: http://euro-me.org/news-Q12012-001.htm (2016-04-27)
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  • European ME Alliance - INVITATION from the DANISH INSTITUTE for HUMAN RIGHTS to EMEA DANSK ME FORENING
    who has been seriously ill with ME for the last five years were willing to give an interview What this family has been going through caused by their GP hospitals therapists and health and social authorities goes beyond imagination It does represent violation of both Human Rights and the UN Disability Convention Our short video and our comments were very well recieved by the Danish Institute for Human Rights On our part we would like to add that it has been a very pleasant and constructive experience to cooperate with the Institute and in the most friendly and obliging atmosphere On February 28 th the launching of the new web site on the UN Disability Convention took place and we were invited to attend this event to see our comments and video being published www handicapkonvention dk To see our comment write artikel 23 in the Search box on top of the site click on the paragraph with our name in it Dansk ME Forening and this should get you directly to our comment We have made an English translation right below Dansk ME Forening s comment on Article 23 What are in your opinion the biggest challenges within the area covered by Article 23 Basically we consider the biggest problem to be the focusing on politics and money at the expense of a decent view on human nature morals and ethics In our case this means the decisions made by health authorities and politicians that ME is a functional disease that only exists in the head of the patients The responsibility and struggle that adults children and adolescents suffering from this disease has to overcome is solely resting on their shoulders only because the GP in general does not know what this disease really is about school is a place where parents for years have to fight to provide their ME sick child tailored tutoring because the child due to illness for periods or maby all the time has great difficulty attending school if the considerations necessary are not provided medical specialists do not understand the seriousness of this disease and often cannot agree on which diagnosis to give the hospital physicians who renounce the severely ill ME patients children and or adults because they do not dare to take the responsibility for such ill patients and therefore initiates sectioning to a psychiatric ward believing the parents are the problem in the case of children nursing staff i n hospitals and home nurses whose working routines cannot embrace the special needs ME sick children and adults have the municipality that refuses to provide special help og aids to children families caseworkers who are much too eager to initiate sectioning of children with ME especially if the parent is single What do you suggest Denmark need to do to solve these challenges We would like to encourage the national health authorities and the politicians to to adapt to their own classification of diseases in this case the classification published by

    Original URL path: http://euro-me.org/news-Q12012-002.htm (2016-04-27)
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  • European ME Alliance Research - Belgium
    Association Nieuwrode Belgium Chairman Alice Vertommen Web Address http www me cvs be Contact me vereniging belgacom net In the window below is the actual web site of ME Patientenvereniging Your browser does not support inline frames or is currently

    Original URL path: http://euro-me.org/Belgium%20ME%20Patientenvereningin.htm (2016-04-27)
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  • European ME Alliance Research - Denmark
    for Myalgisk Encefalomyelitis Chairman Lajla Mark Web Address http www me info dk Contact lajla me info dk In the window below is the actual web site of Dansk ME Forening Your browser does not support inline frames or is

    Original URL path: http://euro-me.org/Denmark%20ME%20DK%20Net.htm (2016-04-27)
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  • European ME Alliance - Germany Fatigatio
    Klasing Web Address http www fatigatio de Contact info fatigatio de Fatigatio is the national German organisation responsible for ME patients support In the window below is the actual web site of Fatigatio Your browser does not support inline frames

    Original URL path: http://euro-me.org/Germany%20Fatigatio.htm (2016-04-27)
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