Re: I have a couple of questions? - NO not in group

[Guest guest]

This or any type of gathering of our personal info for so called research purposes is not allowed in our group.

Since you already posted the message any member that does want to take part in this type of your own self research and purposes of it must do so out of group in private emails.

This type of message or that affects group and all our members should have been sent to me and mods for our approval or not first.

Legitimate medical research is not done in this way or manner is under strict laws protocols and not by using private online support groups and what we personally share about ourselves in groups and our personal info.

Medical privacy protection laws and for our medical records are very strict for very good reasons and to protect patients.

We uphold the privacy - respect - confidentiality of our members and what they share post about themselves in our group by maintaining it fully moderated and approval of new members or not and with the explanation of the purpose they want to join and if they or a love one has HCV.

I receive many requests for membership for the sole purpose of gathering members list using what we personally post about ourselves by authors for profit and for so called research purposes promising not to use names info from profiles and the members email names real names or addresses. Many are also interested in joining for self profit selling of quack sure cures and from many scams and even for selling medical and life insurances. Small non-accredited co's set-up to approve everyone with sky high premiums a waiting period paying premiums before insurances becomes fully active the person co folds up disappears and all we end up with financial difficulties paying for nothing including the sure cures - treatments and many that are very harmful even fatal for some people.

I despise these types of people for profit making money off our suffering and so desperate to clear just because we have a dx of HCV and they know so much money can be made off us.

We are a private online support group and what our members post here and our private and personal info and what we share about ourselves stays in this group only. We do not post messages from members of other groups too. That is not respectful and not our member for them to know about it or reply to it and what we may post about them.

We share deal with very private personal medical emotional issues of our members and with very serious medical problems and end stage of liver and life.

Our members know we run a tight ship and fair group. They know they can share with us in a safe group environment with respect confidentiality and receive the support they need for themselves in all stages.

Thank You

Deb

Hi everyone I know this may sound strange, but then again coming from me what is strange? lol I am doing a research project on Hep C and stereotyping of it. I have stories I can add on my own but thought maybe if you had a thought to add in that would be nice. Just things like how you reacted to finding out I had it/ or you/ or your loved one. Where you scared of the one you knew who has it? If so what scared you? Or why weren't you scared? You know basic knowledge. I may use them in my research project if that is okay but if I make it big becasue of it then I will give you rolalties. lol Also dont write if you dont want to and I wont be offened by anything you say. Plus to let you know I was probley more scared of me than anyone else was. Thank you for your help.

Hey anything else you want to add will be helpful too