I think it would be greatly reassuring if social media assured the authenticity of the participants. It is hard to promote trust in groups where it is uncertain who is in "the room." For instance, where sharks may be lurking for information amd where they may abuse, intimidate, and harass members of the group. For instance, how can one be sure that when you mention your LLMDs name, someone could be taking that information to authorities to cause that LLMD harm. We must learn to talk in code, like the Lyme underground.
I think it is well when there are ground rules for communications and standards of cyber-conduct within social media groups purporting support and information for Lyme patients. They should be plainly visible on the main page, along with vision and mission statements.
It is also reassuring when the owner/moderator(s) of the group is visible and may be contacted by members experiencing distress. They may function to proactively spot and screen for problems of group function. They can have the power to eliminate group members who do not comply with the group standards of conduct.
So far, I've had mixed feelings about social networking, particularly Facebook. While I feel I've reached out to many people and helped to educate them, I also have attracted people who are just downright miserable people, which, as a Lyme sufferer, I don't need in my life! I think overall, social networking is a positive thing for spreading awareness, but I agree that there is the perception that you can't be upfront with your identity or your docs identity for fear of being labeled or targeted by insurance companies.
Like previous comments said, it's hard when there's so much antagonism towards Lyme patients and LLMDs and everything has to be somewhat secretive. I feel like there needs to be a massive shift in our culture's attitudes towards Lyme disease and people afflicted with it so that there can be more open discussion and accurate information shared and more help available. People don't have to go underground to get info about cancer treatments, conventional or alternative. So to answer the question, I think increased awareness about Lyme outside the Lyme community would help social media be more effective in helping Lyme patient education. Overwhelming task. Something I pray for.
I think it would be greatly reassuring if social media assured the authenticity of the participants. It is hard to promote trust in groups where it is uncertain who is in "the room." For instance, where sharks may be lurking for information amd where they may abuse, intimidate, and harass members of the group. For instance, how can one be sure that when you mention your LLMDs name, someone could be taking that information to authorities to cause that LLMD harm. We must learn to talk in code, like the Lyme underground.
ReplyDeleteI think it is well when there are ground rules for communications and standards of cyber-conduct within social media groups purporting support and information for Lyme patients. They should be plainly visible on the main page, along with vision and mission statements.
It is also reassuring when the owner/moderator(s) of the group is visible and may be contacted by members experiencing distress. They may function to proactively spot and screen for problems of group function. They can have the power to eliminate group members who do not comply with the group standards of conduct.
So far, I've had mixed feelings about social networking, particularly Facebook. While I feel I've reached out to many people and helped to educate them, I also have attracted people who are just downright miserable people, which, as a Lyme sufferer, I don't need in my life! I think overall, social networking is a positive thing for spreading awareness, but I agree that there is the perception that you can't be upfront with your identity or your docs identity for fear of being labeled or targeted by insurance companies.
ReplyDeleteLike previous comments said, it's hard when there's so much antagonism towards Lyme patients and LLMDs and everything has to be somewhat secretive. I feel like there needs to be a massive shift in our culture's attitudes towards Lyme disease and people afflicted with it so that there can be more open discussion and accurate information shared and more help available. People don't have to go underground to get info about cancer treatments, conventional or alternative. So to answer the question, I think increased awareness about Lyme outside the Lyme community would help social media be more effective in helping Lyme patient education. Overwhelming task. Something I pray for.
ReplyDelete