Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 If I remember correctly- never said she planned to ask Dr Cohen any specific questions about her son. She requested an email address and that is what I gave her.Once again ----we got thru the same reaction from the same people. I am beginning to feel like some people on this list have appointed themselves the Mito Police or personal gatekeepers of certain Mito docs. Once again I don't think supplying an email address anyone could run a search to find is * controversial* and warrants so much attention. If I was asked by the person whose emailed I supplied not to give it out anymore then I would abide by his or her wishes------this is not the case. It is safe to say that we see differently on this issue and since the internet is a free pubilc service-----we are all allowed to voice our own opinions. As for me----I will continue to provide information to those who request it if I feel there is benefit and hurts no one----those who disagree do not have to send any information they find harmful or burdensome to others. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 In a message dated 12/04/1999 12:38:47 AM Eastern Standard Time, Goldenfam4@... writes: << As for me----I will continue to provide information to those who request it if I feel there is benefit and hurts no one----those who disagree do not have to send any information they find harmful or burdensome to others. >> Oh but you are hurting people by sending out e-mail addresses of doctors who are already receiving 100's of e-mails every week from patients who they are faithfully trying to treat and take care of. You are also hurting Dr. Cohen's patients who are faithful to him by NOT giving out his e-mail address. Do you understand that Dr. Cohen has a life, has a family and actually has a REAL LIVE Neurological practice? His practice consists of very ill patients with cancer and also patients dealing with Mito. Do you understand what kind of pressure you are putting on him by announcing his private e-mail address so the whole world can see it and bombard him with e-mails? Have you thought once about e-mailing Dr. Cohen privately and asking him how HE feels about you sending HIS PRIVATE e-mail address out to this very public e-mail list that has over 100 members? Did you even think what the possible ramifications would be if 10 people that aren't patients of his decided to e-mail him? NO- I know you didn't. You are ruining a wonderful thing for those of us who are faithful to and cherish this doctor. There will come a time when Dr. Cohen no longer allows e-mail contacts from his patients and the only way to contact him will be by going to CCF and seeing him in person and do you know why this will happen? Because of inconsiderate actions on your part. Instead of attacking well meaning people on this list why don't you sit back and look what you have done to a wonderful doctor. I challenge you to do the right thing now and leave well enough alone and be a true Christian. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 , It is because of actions like this that we could soon lose the option to e mail Dr Cohen as he will probably need to make himself less available to the public. When this happens, you can thank yourself. Alice Re: Newcomers >From: Goldenfam4@... > >If I remember correctly- never said she planned to ask Dr Cohen any >specific questions about her son. She requested an email address and that is >what I gave her.Once again ----we got thru the same reaction from the same >people. I am beginning to feel like some people on this list have appointed >themselves the Mito Police or personal gatekeepers of certain Mito docs. Once >again I don't think supplying an email address anyone could run a search to >find is * controversial* and warrants so much attention. If I was asked by >the person whose emailed I supplied not to give it out anymore then I would >abide by his or her wishes------this is not the case. > >It is safe to say that we see differently on this issue and since the >internet is a free pubilc service-----we are all allowed to voice our own >opinions. As for me----I will continue to provide information to those who >request it if I feel there is benefit and hurts no one----those who disagree >do not have to send any information they find harmful or burdensome to others. > > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 Kathleen, and , This is a belated welcome to the list from another Michigan mito family! Our daughter Adelaine is 3 1/2 and has Leigh's. The diagnostic process started for us at age one, though her symptoms started at 4 months. We are expecting our second baby at the end of Feb. If you are ever going to be in the Ann Arbor area e-mail me privately at j-cooper@... and perhaps we can meet! , Mom to Adelaine and Baby ? -- The s , , Adelaine and Baby? Ann Arbor, MI http://www.mich/com/~jaj Quote Link to comment Share on other sites More sharing options...
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