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Campaign importance & Knowledge is power
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Posted by: pandora
February 14, 2008 |
I take this opportunity to comment on the posting of Mary Schweitzer, PhD and of KD who asks for additional information on the differences of both meanings M.E.
Dr. Schweitzer's posting is educational. Her main reason for signing the petition is very important and it needs to be shared with others in this forum. It strengthens the importance of this campaign for many reasons and the most important ones are:
1)The main goal of this campaign is to get rid of the term chronic fatigue syndrome with its acronym CFS and Dr. Schweitzer stated” I signed the petition for ME/CFS in the United States because it is the only way to teach people that there was another name for the disease before the name "Chronic Fatigue Syndrome" was thrust upon us in the 1980s.”
2)The campaign for a fair name for CFS embraces the acronym M.E. because the campaign is quite aware that there are two possible definitions/meanings for this acronym. The campaign opens a constructive dialogue for the different points of view of what M.E. should mean from both sides. Both arguments have good reasoning & history behind their opposing point of views.
3) The campaign will provide a good education for our internal community as well as to our external communities i.e. the places where we live, work, play and worship – all venues where this message needs to reach as well.
4)The campaign for a fair name for CFS provides an organized, dignified. with mutual respect in an open forum format for patients to express their voices in the U.S. and as well as the experience of patients from other countries if they choose to participate.
5)This petition will be shared with the U.S. government and its main health agencies & the CFS Advisory committee, as well as with our patient organizations as a sign of our patient advocacy strength. One community, one cause, one voice!
In addition, we all need to be mindful that there are also many patients, physicians and researchers that although despising the term chronic fatigue syndrome and its acronym CFS, do feel that the name change should NOT occur at this time. They would like to wait until additional research which is being conducted throughout the country comes to light. So there are good REASONABLE arguments coming in from all sides.
Dr. Schweitzer's constructive & well detailed posting shared here give advocates good reading and good pause to further learn, analyze and make their OWN decision of what the acronym M.E. should be in the future.
The beauty & the intention of this campaign are all for bringing dignity to our patient community, to creating an environment conducive to healing and more importantly establishing the quality of life that they all deserve!
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Reply 
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Re: Campaign Importance and Knowledge is power by Pandora, Feb 14, 2008
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Posted by: mclaughlinjill
February 17, 2008 |
Re: Campaign Importance and Knowledge is power by Pandora, Feb 14, 2008
It states:
"1)The main goal of this campaign is to get rid of the term chronic fatigue syndrome with its acronym CFS and Dr. Schweitzer statedý I signed the petition for ME/CFS in the United States because it is the only way to teach people that there was another name for the disease before the name "Chronic Fatigue Syndrome" was thrust upon us in the 1980s."
If it is the main goal to get rid of CFS, then there is absolutely no indication as to how this will occur or could be accomplished with this proposal. This retains CFS.
Saying that this is the only way to teach people about another name for the disease? Of course this is not true. In fact this only adds another layer of complexity to the confusion and disgnostic integrity. All it would require is to educate on ME by extricating it from CFS, not by attatching to it - *with no explanationor reference - and even adding another term such as Myalgic Encephalopathy which is not recognized. Myalgic Encephalomyelitis existed long before CFS was "invented."
"2)The campaign for a fair name for CFS embraces the acronym M.E. because the campaign is quite aware that there are two possible definitions/meanings for this acronym. The campaign opens a constructive dialogue for the different points of view of what M.E. should mean from both sides. Both arguments have good reasoning & history behind their opposing point of views."
No, there are not. It is unfortunate that the committee is not aware of this. There is no definition or official recognition of Myalgic Encephalopathy. It is another made up term (like CFIDS, which has not gained us any recognition or credibility), which only adds to the confusion. The reasons for using it could hardly be considered "good," but just another red herring.
"3) The campaign will provide a good education for our internal community as well as to our external communities i.e. the places where we live, work, play and worship ý all venues where this message needs to reach as well."
How could this educate? Combining 2 different terms, one describing a legitimate disease, the other describing a non-descript fatigue syndrome - and another made up term thrown into the mix to use whatever/however you want. What significance or meaning or diagnostic integrity does this confer.
So likewise this campaign can hardly be called organized or dignified. In fact this just causes more confusion and controversy and actual misinformation and may even make things worse. As Lajla Mark just stated ("Why all the fuss about names http://www.afairname.org/forum/boardDetail.cfm?id=63): " The term ME/CFS simply doesn't make any sense. ME and CFS are not two medically identical diseases, like this term suggests." "Reading the info on A Fair Name Campaign at http://www.afairname.org/made me think, that this must be a last desperate try before closing
down on Myalgic Encephalomyelitis - a well defined neurological disease,recognized by the WHO and by the Health authorities of several countries outside the US."
Yes that's exactly what it will most ilkely accomplish, which is a far cry from the eradication of CFS as proclaimed. In fact, this haphazard, ill-conceived approach is just the opposite of what it purports to do.
Jill McLaughlin
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