Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 forwarding .............. ~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~: >>>> Help ME Circle <<<< >>>> 4 February 2008 <<<< Editorship : j.van.roijen Outgoing mail scanned by Norton AV ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~: References: *Name Change Website Launched* (Co-Cure) _http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801e & L=co-cure & T=0 & P=2672 _ (http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801e & L=co-cure & T=0 & P=2672) *Our Cause: Working for a fair name* _http://www.afairname.org/cause.cfm _ (http://www.afairname.org/cause.cfm) " ....In August, 2006, we launched a serious effort to bring more validity to CFS, to give it a name that more closely reflects the severity of the condition. Toward this end, eight of the most highly regarded CFS experts in the world came together and formed a Name Change Advisory Board (NCAB). In January, 2007, they discussed recommendations for this new name, finally deciding on ME/CFS. Their reasons? 1) ME/CFS is medically and diagnostically correct, reflecting the science of this illness, giving it the credibility it deserves. 2) Used as an umbrella term, ME/CFS will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis. 3) ME/CFS maintains " CFS, " avoiding problems with insurance or disability claims. ~jvr ```````````` Frank Twisk <frank.twisk WHATS IN A NAME? ME OR NOT ME THATS THE QUESTION... I think most of us will agree that Chronic Fatigue Syndrome is a dreadful and denigrating name for a disease, once described as “Forever Dead Syndrome†by Keith Jarrett. As far as abolishing the name Chronic Fatigue Syndrome is concerned, I can fully comply with the thought behind/intention of the campaign for a fair name. However, the alternative [Myalgic Encephalopathy: brain or nerve disease, as a free-to-choose interpretation of ME: an abbreviation already used for a well-defined disease!] is a big step in the wrong direction. Myalgic Encephalopathy 1* is a non-existing “disorderâ€, 2* is not defined, 3* is not known by scientists, 4* creates even more confusion (e.g. -opathy studies will be mixed up with myelitis studies), and 5* even more important, is not recognized by the WHO. As prof. Jason has concluded in two studies (Jason, Taylor, Stepanek, Plioplys, 2001, Jason, Taylor, Plioplys et al, 2002, see also: _http://www.iacfsme.org/WhytheNameofAnIllnessisofImportance/tabid/100/Default. aspx_ (http://www.iacfsme.org/WhytheNameofAnIllnessisofImportance/tabid/100/Default.as\ px) ) the name of the disease is important for the perception and attitude and behaviour of medical trainees and students. And the name will undoubtedly be very important for perception and attitude and behaviour professionals, politicians and the public BUT.... My disease already got a fair name: Myalgic Encephalomyelitis. A name which is used in medical literature for more than 70 years, a name of a disease well defined by dr. Melvin Ramsay, a name used for all epidemics in the last century, and above all, a name acknowledged by the WHO as a (neurological) disease. AND What is even more important is the connotation, the definition, the criteria. ME is a disease well-defined by dr. Ramsay (officially classified by the WHO). CFS (Fukuda 1992, Reeves 2005) is just a garbage bin, a syndrome, the only disease defined by symptoms. The diagnostic criteria define a disorder with strongly resembles somatization disorder (Nightingale definition/Byron Hyde, 2006: _http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf_ (http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf) ). Instead of putting a lot of effort and enthusiasm in changing a dreadful name (CFS) in a new name (of an non-existing disease Myclagic Encephalopathy), it would be wiser to utilize the scarce energy into disseminating and advocating: 1* the name Myalgic Encephalomyelitis, 2* a clear difference between the ME and CFS , (in line with the suggestion of dr. Byron Hyde) 3* The use of clinical diagnostic criteria for ME (for the time being called ME/CFS), like the Canadian Guidelines (Carruthers et al, 2003: _http://www.investinme.org/Documents/PDFdocuments/CanadianDefinition _ (http://www.investinme.org/Documents/PDFdocuments/CanadianDefinition) ME-CFS.pdf, or the Nightingale definition (Hyde 2006: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf ) 4* the definition of subgroups based upon biological parameters, and 5* the use of biomarkers in scientific research. In conclusion, Although the initiative is probably a well-meant one, the proposed double name standard (leaving the interpretation of ME open) is a very dangerous one. An example to illustrate this view: Professor van der Meer, a well-known proponent of the biopsychological school in the Netherlands, has already embraced the name Myalgic Encephalopathy in an interview, while calling the name Myalgic Encephalomyelitis misleading (http://www.me-cvs-stichting.nl/JosvanderMeer.htm, Dutch). The same fatigue expert proposed 4 months ago! that TNF-a, part of the inflammation cascade, in the brain is causing the fatigue syndrome (http://www.nijmegenonline.nl/nieuws/radboud-vermoeidheid, Dutch). Frank Twisk ~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
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