Scleroderma Information » Scleroderma » HONESTY IN POSTING
Question:
I feel that for whatever reason that the response to my posts were not appropriate. It appears that when a certain faction is not catered to they make a a mokery of what others have to say. I thought long and hard about the comments about me. All that I have written was solely about scleroderma. I see the same three patients carrying on personal conversations and jokes in an are not designed for that. I was sent two copies from people I don’t know of the "Boston Globe" article which was written by a doctor and found to have enough merit to be published by the Scleroderma Foundation. The fact that it was published indicates to me that they are in agreement with the contents. Instead of posting online I plan to copy my posts and the posts that were posted with Donald Duck and the entire attempt at belittling what I had to say.and send it to the main office and see what the foundations feelings are about the use of the computer as a modality to exchange information. It does appear that the same patients post regularly and there is a significant reaction when a newcomer joins who has comments that are different from the couple of regulars. As for online with the continued lack of medical moderation even though this area is an open domain, it poses a great danger. I agree with the doctor who authored the Boston Globe article. There are far too many variations in a disease with one name "SCLERODERMA" to safely post about treatment. I read the charter and it only asks that the posts remain basically polite and on topic. Nowhere is there anything spoken about the verasity and the medical review of what is discussed. It appears that is why it is only the same doctors who ever participate in the chats. The others are busy treating patients. I saw alot of the same thing over and over again in the chat transcripts I read. It was much like a dance of words. This is why my doctor who has been approached will not participate, and wishes to remain behind the scenes. Regards Tamara
Response:
x-no-archives: yes > – Hide quoted text — Show quoted text ->I feel that for whatever reason that the response to my posts were not >appropriate. It appears that when a certain faction is not catered to they >make a a mokery of what others have to say. I thought long and hard about >the >comments about me. All that I have written was solely about scleroderma. I >see the same three patients carrying on personal conversations and jokes in >an >are not designed for that. I was sent two copies from people I don’t know of >the "Boston Globe" article which was written by a doctor and found to have >enough merit to be published by the Scleroderma Foundation. The fact that it >was published indicates to me that they are in agreement with the contents. >Instead of posting online I plan to copy my posts and the posts that were >posted with Donald Duck and the entire attempt at belittling what I had to >say.and send it to the main office and see what the foundations feelings are >about the use of the computer as a modality to exchange information. >It does appear that the same patients post regularly and there is a >significant >reaction when a newcomer joins who has comments that are different from the >couple of regulars. As for online with the continued lack of medical >moderation even though this area is an open domain, it poses a great danger. >I >agree with the doctor who authored the Boston Globe article. There are far >too >many variations in a disease with one name "SCLERODERMA" to safely post >about >treatment. I read the charter and it only asks that the posts remain >basically >polite and on topic. Nowhere is there anything spoken about the verasity and >the medical review of what is discussed. It appears that is why it is only >the >same doctors who ever participate in the chats. The others are busy treating >patients. I saw alot of the same thing over and over again in the chat >transcripts I read. It was much like a dance of words. This is why my >doctor >who has been approached will not participate, and wishes to remain behind the >scenes. >Regards Tamara
Mia, Miriam, SahronG, Tiara with a T, If you have so many dislikes On this BB, why don’t you fold up your tent and go play in some one elses back yard. In all of the net, there must be someone who will play. You have been vile, and nasty. Go home little girl, and take your tiara with you. "If you can’t play nicely, you can’t play at all". You are IMHO, a nuisance !!!!!!!!!!! My best regards Wendy
no comment untill now