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Policy for Comments on Mesh News Desk

Mesh News Desk 200MND, August 20, 2015 ~ The goal of this website, Mesh News Desk (Mesh Medical Device News Desk)  is to provide information to survivors of pelvic and hernia mesh and medical devices to create empowered patients about the dangers and pitfalls of mesh implants. Over the past six months or so, we’ve seen some blogging which we believe is abusive and does not benefit our readership in any way but more than likely causes confusion and ill feelings. In order to protect the quality of our content and to prevent anyone from misleading our readership we feel that it is necessary to set some standards and create procedures for dealing with abuse. 

Your opinions are valued to this matter. Here are some of our initial thoughts. 

*   Since many negative or attacking bloggers seem to have an alias or multiple identities. With multiple names, the same person can increase the volume of negative comments on the same topic. The goal appears to be to hide behind a new identity. This is often accomplished by an entirely new name or by using one’s middle name as a last name. In the future, that practice will be a red flag and the poster will be required to stick to one name only.  

*   Comments that include sweeping generalizations will be discouraged especially if they are disparaging in nature. For example, “Most patients have bad outcomes like I did”  is likely not quantified or even accurate.  Only post what you know to be true!  If it is your opinion, state it as such.

*   Comments that use abusive language, and especially if it is aimed at another person, including, but not limited to profanity, name calling and gross over generalizations, will not be tolerated.

*   Comments that include someone else’s email with the intention others should contact them for whatever purpose, will be omitted.   

Looking forward to your thoughts on this issue.  Thank you!! 

In the meantime, hernia mesh surgeon Dr. Kevin Petersen of Las Vegas has come up with a policy on his own website (No Insurance Surgery) also offering guidelines in the blogosphere. 

 

“Open response to negative bloggers,” was created by Dr. Kevin Petersen, general surgeon who specializes in non-mesh hernia repair and treatment of patients with hernia mesh complications.

http://www.noinsurancesurgery.com/open-response-to-negative-bloggers.htm#gsc.tab=0

 

20 Comments

  1. kitty says:

    That’s a good thing Jane

    I have noticed what I would call vulgarity in descriptions of some folks illness—on the other hand this whole mess we are in is vulgar.

  2. Disgusted says:

    Thank you for sharing this insight with us. I agree that we need to be truthful and respectful of each other. This is a very serious matter with severe consequences. We don’t need the extra aggravation of mucking up the water. I wish there were more doctors to help us, like the Dr. who is in the link. We all need our hope restored to us.

  3. Bejah B says:

    Jane,

    I think this is necessary.

    I hope I am not doing anything wrong (Except maybe talking too much!).

    I sometimes feel I am being attacked, not often, but it is hurtful. One the otherhand I tend to be super sensitive so I understand that I may subconsciously amplify things others say without the intention of being hurtful. I learned some time ago to ask myself, when I feel hurt by another, to ask myself, “Was it the intention of this person to harm me in some way or is the hurt I feel simply an artifact of the encounter”. This really helps me.

    I have never understood why or how people can try to hurt others and words do hurt. Long after a physical wound has healed, a psychic one remains, so the saying “Sticks and stones may break my bones but words will never hurt me” seems to me misguided.

    Bejah

  4. Bejah B says:

    I thought of one other thing…I worry about infiltration by moles hired by the defendants to plant mistrust, fear, and a sense of defeat among our people. Maybe it is just personal paranoia but it does happen. What do we really know about the people who post on this site, those we do not know, those who seem to come and go very quickly. I can not help but wonder who they are really. Who they represent. Is it just me? Is it just thinking that comes with the territory? Not sure. I use my nickname to protect myself against such individuals,against the defendants.

    And I think I remember Jane being faced with Johnson and Johnson demanding the names of the people who post to her site. Although I am certain she would politely decline such an invitation, the ramifications of such a demand or request are food for thought. Cleary they are watching…why? If they are watching then there is a higher probability they are interested in influencing the soul of our community in the same way that political and protest gatherings are infiltrated by individuals who are tasked with creating disruption of some kind.

    Bejah

    Bejah

  5. Still Standing says:

    Well, I might be considered one of those people who come and go. I have followed this site for some time, but have not made many comments, so here is my take on the purpose of this site. I came here to get up to date news about mesh litigation. As a plaintiff, I feel that it is important to stay well-informed and while I feel a strong common bond with all of the women who come here seeking reassurance, as well as those who don’t as a matter of fact, I think it is important to all of us to try to understand the facts of the litigation without getting caught up in conspiracy theories about why this happened. Frankly, I could not sleep at night if I believed that the government, corporations and physicians intentionally set out to harm us. That in no way means that I don’t hold some people accountable for despicable decisions that were made by government and corporations.

    However, I have made it my policy not to make negative remarks about my physicians, and attorneys, especially in public. I believe doctors want to help us, but they operate In the world of science, and there is not yet clear scientific evidence regarding the impact of mesh. Having done scientific research, I understand the complexities of designing research studies for mesh injured women. One hurdle is just in designing the study. Because the individuals have so many different presenting medical issues, it is hard to know what variables to look at. Scientific studies involving humans must also pass a rigorous IRB ( Institutional Revue Board). Then, funding has to be secured which is extremely difficult , participants selected,etc. Because the mesh injured are so scattered geographically, this is a tremendous hurdle. It can take a decade to design, implement and analyze data on this scale. Even then, it is hard to generalize the study to the population as a whole. I believe that over time, evidence will mount regarding the high risks of vaginal mesh and best practices for treating mesh injured women, but until that time, we are unfortunately caught between the world of science and conjecture. FYI- this year the International Pelvic Pain Society will meet in October. I looked over their extensive break out sessions…there is not one session on treating mesh injured women. Last year they had one. I believe this is not an oversight and we should demand their attention. You can start with your doctor and then go up the line to the governing board. We can write coherent letters to our congressmen and women asking them to set aside research dollars for mesh injured. These things, however, must be done from a position of strength. Below are links two research articles that are posted from NIH ( the national institute of health.) These are peer reviewed articles that have been accepted for publication in scientific journals. Further research will build on these until doctors can develop a best practice approach for treating mesh complications

    based on scientific evidence. Until then, there are vast differences between physicians who treat us. Keeping aware of research allows you to communicate with your doctor in an informed way.

    To mesh or not to mesh: a review of pelvic organ reconstructive surgery:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4386830/#!po=16.3043

    Indications, Contraindications, and Complications of Mesh in Surgical Treatment of Pelvic Organ Prolapse:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3644007/

    Here is the American Urologist Association position statement on Mesh:

    https://www.auanet.org/education/vaginal-mesh-for-pelvic-organ-prolapse.cfm

    One more thought. Of course defendants counsel read these discussions. They study it to find our weaknesses. Believe me, after sitting through my deposition for 7 hours, that is what they are hoping for– a woman who has a hysterical nature, who is easily rattled , one they can intimidate and show that it isn’t the mesh at fault, but a defect of character in the woman. This is their image of women with mesh, broken victims who are defeated and hopeless. –The leading question from defendant attorney at my deposition was a doozie and went 40 years in my past. It was meant to throw me off from the start. But, I was clearly focused on being strong and articulate. Will those “spies ” who monitor these posts see well informed and determined women? Will they see strength and resolve? We need to dig down and put on our dignity. That is hard to do when we feel so robbed of it. But we can, with intention, claim it for this fight. I put mine down frequently as I deal with the day’s pains but the last thing I want the defendants to see is a weak woman. We aren’t the first to suffer from medical mistakes and we sadly won’t be the last, but we can resolve to be mentally and physically armed for battle.

    Maybe it would be time to have a password protected web space that would function as an online support group, where more personal comments could be made in a more private way. . We all need a place to vent at times but I can’t figure out how you would screen out people you don’t want in the discussion.

    I apologize for the length of this post, but I think we can educate each other in a way that empowers us collectively and individually to find hope and purpose even while dealing with overwhelming pain and suffering. We do this as survivors in spite of it all.

    • Jane Akre says:

      Standing,, thanks for writing…. I’d welcome more from you and your expertise… even if it has to be anonymous, which would be a shame because you are educated in the area of pain that many want to know more about. Please let me know if you can post an article. I’d welcome it. And thank you!

  6. Bejah B says:

    Bravo SS, Informative, rich in light and hope, beautifully articulated. Thank you so much. More homework! My favorite phrase…”(we need to) dig deep and put on our dignity”.

    I believe one reason we are drawn to Jane’s website is not only for a place to communicate with others in our position, but also because it is a resource for information, data, links, news and we are hungry for knowledge, more knowledge about this matter, what can be done and what is being done (if anything).

    Women have long been thought of as hysterical and fragile, long before Freud. There are still great inequities, even in western culture. There is a high probability that corporations will exploit the myth of hysteria in all manner of ways, from promoting wrinkle creams to using us as lab rats, as vehicles to generate profit.

    I favor the idea of a password protected site as a companion to this one where women can post without the constraints posed by feeling like they are being observed. In exchange they could be asked to provide a little more information about themselves to ensure they are who they present themselves as.

    There are problems with an open website. I once organized a meeting between advisors to then Russian President Boris Y. and academics and policy makers in the U.S. I decided to video the meeting. I worried later that it may have had a negative effect on the participants willingness to speak freely and did not do it again. This is a possible issue with an open site. Having said that, is it not a core feature of a true Democracy that it has a genuine free press? The sad truth is that we are free to speak our minds up to a certain point beyond which we begin to feel pressure to reign in our remarks. How free is out press, really? Right wing pundits are well tolerated (to say the least) in America for reasons that are beyond the scope of this positng (I love saying that!). Left wing journalists are not well tolerated, but so long as their audience is small and therefore not threatening, they are not generally shut down one way or another. If Jane were to establish a password protected site it would mean more work for her which is not fair. It would also attract the interest of site observers (Defendant representatives).

    I have come to believe that there is not much Johnson and Johnson can not get away with so creating a more secure environment may be a futile but well intended idea. On the otherhand the birth of the World Wide Web has changed the landscape of civilization already and enabled the people of the world to speak their minds and make meaningful changes. Where does that leave us….in “a brave new world” I expect. I am going off now to explore the links that StillStanding provided us with.

    Bejah

    • Jane Akre says:

      I really feel it’s your website… not mine… I just facilitate it.

      Really the multiple named folks are not welcome here.

      Why do you need multiple names if not for no good?

      • Bejah B says:

        The only other reason for multiple identities that could possibly be understandable is where those poor souls have multiple personalities.

        Individuals who come and go, pop in and out, present with different names, especially where they are confrontational or attempt to sew seed of disent are propably either North Korean spies,ISIS terrorist wannabees or working for Johnson & Johnson or one of their ilk.

        The important thing is that we are watchful and observant….we have a kind of neighborhood watch so those of you who fit the profile are invited to move on unless you want us to follow your trail of breadcrumbs back to your nest.

        Bejah

  7. stopmeshimplants says:

    Seems sad to me that you need to include these policies to protect yourself and others. I think of this place, website, as a refuge. I consider this a place where I can come to share, vent and learn. There is no reason for any negativity here. We have all been hurt for far too long and we continue to fight so many battles. My only hope is that everyone understands we are all in different places with our grief and loss issues. We need to respect where people are in this vicious roller coaster of physical and emotional health issues. Thank you Jane for providing this outlet for all. Take care.

    • Jane Akre says:

      Thank you for your support. There is a lot of infighting now and it is very ugly. Remember some women are new to these issues… they are at the beginning of their journey…. this is a place for information and for you all to support each other. I’m just the publisher, not mesh injured, so I can only provide the place….Looking for and will welcome any essays you want to write… they can be anonymous. Thank you!!

    • Bejah B says:

      This is a very good point. Jane needs to watch her back and keep impeccable records as this gets (presumably) larger and the issues “hotter”. Any of these people could turn on her any moment and some have, The piece about Reuters really stunned me in this regard…a lot of emotion. With this in mind I am going to pull back and comment a lot less. I feel like there are a lot of people in this community that really dislike me and I can feel it. It seems less the refuge it has been and should be and that is because of those who post here. Snarling about “drama” is shocking and sick”, for example. It is not something Jane can control. It is sad that these people who have been wounded would lash out at eachother but that is the way people are. Peace be with you all.

      Bejah

      • Jane Akre says:

        Bejah-

        I like you. You are intelligent and thoughtful. Anyone who bashes another is guilty of the worst kind of cruelty. Especially when they just make it up.

      • addison says:

        We like you, too, Bejah. 🙂 Please don’t worry about the things you’ve written; as Jane mentioned, you are thoughtful and intelligent. Thank you for your contributions!

  8. Bejah B says:

    Thanks guys…I will try harder to be sure I stay in appropriate perameters. One thing that presents a problem is that feeling of an upsurge of emotion about an issue or situation…makes one lean over the line and into subjectivity and other messy muck. Sometimes so hard to be objective. It seems a lifelong learning curve. I am so grateful for your kindness.

    Bejah

  9. Robert Martin says:

    Having severe pain after insicisional hernia repair stemming from aortic bifemoral bypass. Pain is excruciating when turning in bed, coughing, sneezing ect.and does not last long. Dr.says mesh is 13″×7″. Told Dr.about pain and he acted like it was normal.

    Anybody have a similar experience? Also worried about possible blockage in bypass graft in future.

    Wondering if mesh will be able to be removed to get to graft to do repairs if necessary.

  10. Clay says:

    Thought This Might Be Of Some Help To You All. Have Been All Over The Maude Site Looking To See If There Was A Recall On The Mesh That Was Implanted In Me. Couple Of Days Ago I Get An E-Mail From FDA.Gov Letting Me Know That They Have A New Site That Lets You Search All The Different Medical Devices (Implants).http://accessgudid.nlm.nih.gov/?source=govdelivery&utm_medium=email&utm_source=govdelivery Copy And Paste Into Your Browser. Good Luck! I Never Found Mine.

  11. Marcie says:

    As always thanks Jane for all you do for the injured keeping us informed, providing valuable information and links to doctors that are both willing and can help us. Helping us with legal issues. Without our efforts we would be left in the dark about the trails. Helping women find legal representation so they have a voice. These negative bloggers have no place to behave the way they do. I really feel that they may be dealing with unaddressed mental health issues. However, I do not understand how the masses do not suspect or takes issue or a stand against women who behave as such. Just know people who belittle and talk lies and hate toward on women will turn like a switch and start to attack you. I feel you should not give out your personal health records and conditions to others on line. I try to help others with mesh by being open about what I am going through. It is a struggle and our issues are real. We have been broken to the point of no repair. We are moody and in pain. It’s not a weakness but a state.

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