Public diaglog about experiences with and the science of Lyme disease

[wonko]

When I first got sick with what was later treated as Chronic Lyme disease, I decided to participate in reading and posting on community websites such as this one.  In fact, it was through people at MedHelp that I received the information that guided me towards selecting the Lyme doctor who diagnosed and treated me.  So it is obvious why I feel a high level of respect and regard for the community here.

Many recent posts here have me thinking about the issue of how this type of community can share information and communicate experiences.  Since this is a community site and not an expert forum, we're all posting anonymously.  To me, that means that one style of post does not invalidate or "trump" another style of post.  For example, on a single thread, one person may contribute by sharing their experience, while another person may choose to quote technical literature.  The former does not qualify as evidence-based science, but a testimonial may satisfy other community interests, or simply offer some compassion towards a situation.  The latter approach of citing journal articles or quoting supposed experts also can benefit the community.  However, I find it unproductive for the author of one style of post to criticize the other.  Furthermore, as this is not an expert forum, there is no guarantee that what is cited here as expertise is in line with what a verified expert would express.  

I've made several friends through this site, some with whom I've shared 100's of pages of email communication, or even met with in "real life."  Much of what I have taken away as valuable from here has been in the form of what I learned and shared through testimonials and personal statements. I can conduct research by following up on leads from posts here, but to me that does not replace or supersede the human element of support and compassion that enriches a patient community forum such as this.

[mkh9]

While I was luckily not involved in whatever took place. I will say sometimes people are not feeling well and don't say what they want to say. That being said, I agree there should not be criticism of each other on these forums. Actually, I think when someone states an opinion another poster should not respond to that poster they should respond to the original poster. At least that was what I was told on other forums here. I am a professional microbiologist and signed up here as a professional. I don't know all the answers about lyme and have not had lyme so I find it interesting and helpful to hear from both sides both those that post in the form of literature and personal experience. I have mostly clinical experience. I have dealt with patients and patient specimens as well as doctors, nurses, pharmacists etc. in my career. I have also published quite a number of publications on infectious disease topics, but not on lymes disease. I think you will find that there are also nurses and nurse practitioners on these sites as well (even though they are not a paid forum. It is a mixture. We don't always like to come out and say I am a microbiologist therefore I am right, LOL. Sometimes I do know things sometimes I do looks things up and other times I am learning too. I hope this helps guide people here. It is a lively and wonderful experience for me to be part of this forum and the other forums I belong to and ask my own questions to my own problems. I am grateful to have Medhelp.
take care,
mkh9

[cave76]

"I can conduct research by following up on leads from posts here, but to me that does not replace or supersede the human element of support and compassion that enriches a patient community forum such as this."

Well said! I agree.

You also said:

"However, I find it unproductive for the author of one style of post to criticize the other."

Also well stated and I fully agree!