MedHelp has been offering Hep Forums for many years and through those years, most all of our members have appreciated the fact that we do monitor our forums. Many of you are undergoing treatment with some pretty horrific drugs and we want you to feel free to discuss your experiences (good & bad) with all of our members. This forum is a place for patients and their loved ones to come to talk and share support. This is NOT a place for discussions about religion, politics or other "hot button" issues, because as we have all seen, these discussions escalate rapidly into all out war, which defeats the purpose of this support forum.
As always, we are so grateful to each of you who give so much of your love and knowledge to others. We always want to hear what you think and how we can improve our forums.
When I was treating the forum was a God sent place. There were so many knowledgeable people about HCV and it's different treatment approaches. I was able to prepare myself very well before starting this very difficult journey. We researched and discussed and also had lots of fun. There was a good balance.
It has become so restricted, that most of us who have some knowledge and the ones who have a lot of knowledge have either stopped posting or do not feel like being here anymore.
I feel bad for the new people who do not have the same opportunity as we had.
This forum has nothing special about it anymore.
It is comparable to an intelligent, compassionate and knowledgeable person suffering from dementia and thus all the knowledge being gone.
It is sad. And I don't think that under the circumstances this place can be saved.
I know that many of us don't see any point of staying here. It is not our loss, as most of us have reached SVR. It is sad though, very sad.
Have you or any of your moderators ever undergone a course of IFN tx? If not, you should seriously reconsider even including an HCV forum on your site. It's not just a "horrific" treatment for a deadly, horrible disease. The drugs themselves carry a black box warning for a very real reason.
If you lose people like mikesimon, susan400, bill1954, JennyPenny, and many others with long years experience and hardheaded common sense you risk running a forum that is worse than useless. Bad advice on this topic can kill and no fine print disclaimer would allow me to sleep well at night.
This forum is no longer the place for cutting edge discussions that it once was, but at least those of us who have stuck around can point people in the right direction to do the research they need to make informed decsions and maybe occasionally steer people away from some blatantly wrong (though sometimes well-intentioned) misinformation that always pops up.
Lose that, and all you're doing is maintaining an 'attractive nuisance' - fine print disclaimer or no.
There is an amount of isolation that peole in treatment need to deal with. In many situations the patient does not share the disease or treatemt with other people in that same situation. Here, it like Cheers. Everone knows your name, but not really. Here, people can be what they want but with no stigma, pity and no polite avoidance like they might see and feel in the real world. The anonimity and the disease makes everyone the same, but different. To expect that people will leave all else at the door into Medhelp is a little unreasonable. It's like part of you is accepted here but other parts of you are not? You can't chop people up like that and expect to get the best of them. The best of person is the whole enchilada of a person.
No one expects this to be tea and cake at Miss Manner's Tea Shop. The worst baggage that people travel with is the disease; not their personalities, opinions, politics or religions. The real need is to reach to people who are like them and unlike them at the same time. You should worry a little less about sensitivities and be mre concerned about sensibilities. Mixing it up is how people really live.
I know when everything went wrong.
It was after Andiamos political thread before the election.
And there where some scary remarks on that thread threatful is to say the least.
There was one person who really crossed the line.
My question is shall everyone suffer because one person made threats to someones life.
I have said this numeros times before in threads simular to this one , imo the only time someone should get banned and comment should get deleted ( never whole threads ) are when someone is making threats to someones physically person.
I`ve seen both forums before that political thread and after and its a totally different place.
You think the problem was that it was a political thread, there I have to disagree.
Ok that person may not have been threatful if that thread never had existed.
But once again shall one persons state of mind set the rules for everyone.
Let me also remind you about another person who made threats in a simular
way and that was in a thread about treatment.
I wanna apologise for calling MH moderators KGB officers.
But you got to admit you´ve lost it after that political thread.
And not allowing any discussions about politics and religion that was, is exactly what they did and are doing in societies run by dictators.
We (many of us)don´t wanna have it like that here at the forum.
Can you understand who people feel when they allways has to think before writing anything, is my comment gonna get deleted or are the whole thread gonna disappear.
That person who made those terrible threaths was just banned some time then back again ok "he","she" behaved after.
I think such person should be banned permanently, but instead other persons has been just that ( banned permanently) who never made any threats to harm anyone.
And that is one example of what i mean by MH lost it .
Another one is that whole threads has been deleted and valuable information been gone.
I´m saying this again (last time) please let us moderate the forum our selves except
when threats to ones life are at hand or when obvious spam.
It's just very very very very boring to be only allowed to say "weight based ribavirin, take procrit, drink water, get frequent PCRs" over and over ad nauseum.
Yesterday I read that thread very frequently and didn't see anything that outright was so bad that anything should have been deleted or anyone warned or banned. While the situation was inflamed already doing so made people even MORE upset. Instead of letting them speak their minds and letting the situation calm down and expire it just got even more obvious that you can't say anything anymore and to express your feelings you need to say "yes weight based riba" to every single answer on the forum or risk being threatened/deleted/warned/banned while others can come in and spam till they drop and express the most ridiculous notions I"ve ever heard of and dispense medical advice that is consistently incorrect (and then someone says no that is wrong and immediately is accused of ganging up) and are never reprimanded for doing so.
It was SO much better in the olden days when they MedHelp members looked out for the forum and each other. Now you never know how long it is until you are the next one to be dropped and all because you said your mind and didn't even say anything mean spirited or against the rules.
This is not a true moderated forum where the moderator participates regularly. The moderators pretty much stay out of things until someone hits the abuse button. Then, you jump in with both feet and fire a bazooka. I saw no reason why my last thread was deleted. That was pure censorship.
Look at the activity on this forum and you can see the damage you are doing. I posted the last thread when I saw that no one had posted on the forum in 20 hours. In all the years I have participated here, I have never seen that before.
I used to participate here every day and now I stay away. I'd like to stick around and be here for newbies, the way that others had been here for me. It's kind of sickening that so many good people are gone and that those who choose to remain operate in a culture of fear. It's a terrible thing to micro-manage and control people.
I'm guilty of participating in threads of a political nature and of saying some amazingly horrible stuff to my fellow heppers. The thing is, we worked it out ourselves and didn't need a bunch of moderators to tell us to play nice. I said nasty insulting things to people that I came to love dearly because I'm a grown up and a human who makes mistakes. Add the poison many us have had to survive daily for months and even years to the mix. Toss in a disease that makes us social pariahs and a few international date lines and naturally there will be differences.
Just leave is alone and let us work through our feelings and differences. Otherwise, try REALLY HARD to imagine the world through our eyes. People have been given control to moderate this community and in the process have destroyed the best it had to offer.
I don't know why Andiamo's thread was pulled.
We were complaining, but not pointing fingers at any one person. I thought it was more like a bunch of old timers saying, " it used to be better in the old days".
He said 'the forum has become boring' and we replied.
Are we not allowed to do that on a social forum?
So I became angry about you guys pulling his post and sarcastically called you nazis.
And you pulled my post.
Do I think you're going to kill Jews, gypsies, gays, and black people? NO.
Do I really think you are Nazis?
No, of course not.
Did I say, Cindy is a Nazi? No.
It was an expression of my exaperation over an unexplained and in my view unnecessary censorship by medhelp, a faceless entity.
" This forum is a place for patients and their loved ones to come to talk and share support. This is NOT a place for discussions about religion, politics or other "hot button" issues, because as we have all seen, these discussions escalate rapidly into all out war, which defeats the purpose of this support forum. "
I couldn't agree more. This should be a safe place for people to come to . Not a place that raises BP because a few cannot get it through their heads this is NOT a political website. There are millions of them out there to choose from and those so inclined should take their party politics to one of them. It wasn't that far back that Medhelp graciously added a 'social forum' where people could discuss HCV , how it affects them and their loved ones, treatment tips, and communication between members concerning HCV. Not politics. Nor religion. Just HCV.
I appreciate you trying to keep the format in line with its intended purpose. It is mind-boggling to me that some here think there is nothing wrong discussing politics ON an HCV website.
"I guess it's ok to discuss what you feel like discussing on the social side so why don't we get a list from you of what is appropriate and OK? "
Medhelp has already provided you with a guideline for THIS forum. It has been posted at the top of this forum page since its inception. I do not see "religion" or politics" up there anywhere. It is a no-brainer that you stay away from volatile subjects on a medical support forum. Adults shouldn't have to be told this. I have had MORE posts taken down than anyone of this forum. Posts with good accurate medical information. That's not Medhelp's fault, save for the fact there could be a review system in place, instead of allowing members the liberty to be censors. The numerous posts I've had deleted were the work of members and most of them are the 'old-timers' who like yourself now complain loudly about censorship. I know for a fact that this has been the case in many instances.
This forum is for questions about medical issues and research aspects of Hepatitis such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you have a medical question, comment or research study pertaining to Hepatitis, please post it in our Hepatitis Forum
It must not be easy managing a free message board this large and diverse. Imagine the staff and costs to run their servers, build and maintain the web framework, control spam as well as monitoring the discussion forums. Good to acknowledge that.
What seems like a good discussion to some may be offensive to others. Many people that come on here may never post but just read some of the discussions and be turned off by what may seem like cat fighting. I myself stopped coming to this Board for several weeks during treatment due to something that I felt attacked on (I can't recall it now due to fog brain). I appreciate this Board being a safe place for those seeking information and support around Hepatitis and other medical issues. And great that it is free - let's not forget that.
There are many other sites to go for political or other off topic discussions. A Yahoo group can be set up if that is what members here want to do. But let's not abandon a place that has been so useful to so many of us before during and after treatment. That is the goal here - having a community to get through this horrible disease and treatment. It is also great that many friendships have been built here. So let's all step back a bit and put this into perspective and keep up the great work we all contribute to in helping others and sharing our knowledge and experience while respecting others opinions.
This thread was started by Cindy as a result two threads going down that had nothing to do with politics or religion. Perhaps some of you who are commenting didn't have the opportunity to read them/
Simply stated, another member started a thread expressing his opinion and asking the opinions of others as to why the forum had become boring. Many members responded with an honest opinion which MH deemed an unacceptable form of bashing. No politics or religion, no members attacking each other. I read EVERY POST and found nothing unacceptable, however, since many of the posts were directed at MH they deemed the comments unacceptable and the thread went down.
im very knew this site and would like to ask all the people who have gone through and going this treatment not to stop coming to this site. I learn alot from reading old and new post i just started one week ago and i would hate for you guys to leave. i havent posted much but when i had a question i got great help. I was up all night worried and in the moring checked my post and was relieved. It would be a great loss of you guys left.
I missed the threads that stirred the censorship. While I agree that the site should be civil and tuned towards helping those with HCV related problems, I would welcome a more liberal attitude towards censorship.
I have seen some really good individuals banned from the site and I still do not understand why. As Mr. Liver says, we should avoid volatile subjects as a matter of courtesy (I've learned this lesson the hard way on a couple of occassions). Nevertheless, people make mistakes and banishment should be the last option reserved for only those most egregious violations. I am hard pressed to imagine that some of the banned individuals were guilty of such indescretions.
I am saddened and a little angered by the loss of good people from this site. I have no way of knowing whether or not such actions (banishment) were justified.
To be honest i don´t know if I have gotten so much practical information that has helped my treatment strategy here at MH.
Yes you helped me advocat when docs wanted to dose reduse pegasys because of
low neutrophils and stand up and refuse that, that could have been the differens.
( allthough I think it was mostly my ex zazza who helped me with that but shes a member here aswell)
I have got priceless help here coping with my second tx don´t know if I would have managed without it.I couldn´t barely fullfill my first when I didn´t had the forum and it was just half 24vs48
All the knowledge I have recived here, somehow made me feel I was top of the game and not just a victim and thats priceless in the aspect of taking down the dragon.
(staying the course taking the meds etc)
I´m very greatful to all knowledgeable people I have met here at MH.
Sorry to say some not many just a few has allthough knowledgeable as hell, has been such a bullies and stiff minded and lack of social skills persons.
I might just has been as good without them
When your sick and doing or are about to do treatment you need people around you
who dare to be people not only facta machines.
Thats why I say every hepper doing tx are contributing one way or another
Bullies always leaning to rules and regulations for others ( never follow the rules them selves just like to throw the book at others) aint they?f..........them I say.
I have to say I fall closer to Mr. Liver on this one and with Brent, with regards to the purpose of this side of the forum. I *did* read Andiamo's thread and couldn't post at the time and when I got back to it after work, it was gone.
What I intended to post was something along the lines of how boring it is to read another thread on how boring it is here. I'm not much for whining and this is what all this is starting to sound like, a whole lot of whining.
If this is all your social life consists of, then you're wasting your SVR. There are places to go for political discussions. There were some very fine ones at times here but on the whole they were divisive and unproductive. We did manage to have a mighty fine healthcare discussion that never got pulled and died out all on it's own. Now that was great and it wasn't all that long ago. Some of the people whining didn't participate in that one at all. So where were you then? I have political discussions with people that I know well enough to do that with OR I go on a forum that is precisely what that forum is for. Start another political thread to kick it up a notch here? Is that the best we can do? Come ON, people. As for there being no post here in over 20 hours...oh well. It's the SOCIAL forum. The other forum is pretty active and it sure doesn't go 20 hours without a post. No sir, it sure does not. There are all kinds of posts happening over there. I'm not too concerned if the social side is quiet.
This place was great when I was on treatment and it WAS my social life in alot of ways. I did pretty well on the QOL meter while I was on treatment but on the whole, I don't know what I would have done without being able to drag my sorry a$$ over to the computer and hang out with my buds who understood why I didn't have the wherewithal to get out and socialize up a storm. And on the days when I was too tired to type, I could at least read and know I wasn't alone. That was great.
This place being your whole social life? Come ON, people.
This is a Hep C forum, for pete's sake. Those that can, get out there and LIVE. Make that SVR worth everything you fought for.
I've been back alot lately but I'm not here to post about my busy frantic social life. That seems like a kick in the teeth to those that were where I was on treatment and far worse. I'm here to do my wee bit for those that are coming along and give some payback for the grace that was shown to me while I was on treatment.
The major reason this forum is here... is Hep C.
What's a shame is the inconsistent moderation and poorly moderated aspects lately, such as Desrt put it. Posters aren't allowed to have a sense of humour, which is a bloody shame. When you get people asking some of the more ridiculous and inane things, sometimes the best way to get the point across is with an incredibly funny and witty response, a la FlGuy and GoofyDad. I'd like to say to the moderators of this place - geez - let us keep a sense of humour in the face of all this "horrific" treatment you know people are going through. One of the greatest weapons in our arsenal is to keep a sense of humour. For awhile, an inmate was allowed to run rampant and run the asylum here and no mirth was allowed. Can the moderators get a handle on that please?
And man oh man....can we quit the whining finally and carry on here?? I'm really big on " fix the problem, not the blame" - so what can you smart people do about being part of the solution, hm??
There's all kinds of people who need information .. like the poster who wanted to know if they could catch HCV from a doorknob .. like...I dunno, were you sharing works with him?? Har, har. Sigh..where's Goofy when you need him?
Trish, My SVR is not wasted at all. I can pop in here in between keeping the books for our 3 companies, cleaning kennels and what-not also at night on my "down" time.
----------This is a Hep C forum, for pete's sake. Those that can, get out there and LIVE. Make that SVR worth everything you fought for======
This statement means to "me" that I should be out and about living.....I don't want or need to be out and about, I have my paradise here on my 15 acres, there is always something to do. And when that is done, I check in here. Not being disrespectful but we do not all fit in the same mold.
I happen to like the social side (when it used to be fun) It is what it says "SOCIAL" not technical. that is for the other side. JMHO
Don't worry about people leaving. Most people that have fought this difficult fight keep wanting to help new people. I know that I expected to leave the forum once I ended treatment. I don't post often, but I do read the forum once a week or so and answer questions when I can. I will always feel obligated to help anyone with HCV any way that I can.
I spoke my mind when I felt the forum had changed to the point that people stopped posting. I feel this social forum has much to offer. Sometimes, I just told stories about sailing. It took my mind off of the side effects and some people that read the stories liked them.
I hope medhelp changes their censorship policy. I am sorry that Trish is bored by reading the thread. I actually think it stimulated her, since she wrote a long post. If she were truly bored, she probably would have just fallen asleep.
We apologize for removing your message about the forum becoming "boring" - it was an error on our part! We also appreciate your message to "Meems" above. We are reviewing our censorship policy and as you can see by my most recent post, the only topics that are not allowed in this community are RELIGION and POLITICS....and of course our usual rules for all of our Forums & Communities.
Thanks for your kind words about the benefits of this community. We hope you'll continue to share all of your ideas & suggestions for iimprovment.
"Trish, My SVR is not wasted at all. I can pop in here in between keeping the books for our 3 companies, cleaning kennels and what-not also at night on my "down" time.
----------This is a Hep C forum, for pete's sake. Those that can, get out there and LIVE. Make that SVR worth everything you fought for======
This statement means to "me" that I should be out and about living.....I don't want or need to be out and about, I have my paradise here on my 15 acres, there is always something to do. And when that is done, I check in here. Not being disrespectful but we do not all fit in the same mold. "
Well, sounds to me like you ARE out living. You misinterpret what I mean when I say that. Sometimes my paradise is having my nose stuck in a newspaper reading it cover to cover.
I like the social side too. I always click on both. I just happen to think that while some of the quietness here is due to the inconsistent and mysterious approach to moderating, the other is simply that I believe a number of us who were on treatment at the same time and socialized heavily together have simply moved on to start spending time in our own respective "paradise", whatever that may be and drop in only on occasion... but we do drop in.
And Andiamo, I wasn't bored the first time I read that kind of thread. It grows boring to read the same sentiments repeated over multiple threads. You speak your mind, I'm speaking mine.
Do you remember the black hole you were in post tx not that long ago.
Anyway good to hear your better , but you don´t have to be so cocky and tell us others to get a life and also telling us what that means .
You are not everyone but you sure seems to think you know whats best for everyone.
( I guess this is not the first time you have heard this, that you know whats best etc)
PS the only one whos been whining imo is you Trish in your comment above.
Thank you for being so understanding. You have provided a wonderful forum for many people. Most importantly, you have been very willing to try and understand the problems of people using the forum by listening to the users.
I don't think hearing the truth is boring, no matter how many times you hear it. There have been many social changes that never would have taken place if the instigators of the change were afraid of boring people with repeated missives on the same subject.
I am glad to hear you are feeling great and having a busy social life. Feeling good again is why we all went through tx.
"I don't think hearing the truth is boring, no matter how many times you hear it. There have been many social changes that never would have taken place if the instigators of the change were afraid of boring people with repeated missives on the same subject."
I'm with you on the moderation issues - though we probably differ on some aspects of that, we agree in principle there. You started to lose me on the forum being boring and where really you lost me is the comment about starting a political thread and bringing Meki back, not the actual bringing her back but the reasoning to it. Last political thread you started altered some forum friendships permanently and for me, as much as I enjoy discussing politics, I don't want to revisit that here ever again. How does bringing Meki back and starting a political thread have ANYTHING to do with the moderating issues that many seem to think are at the root of the "boring" situation, i.e. the lack of posts on the Social side? That is where it appears what you're asking for is entertainment. That's what spurred me to comment. I guess we could bring on the clowns, I don't see how that resolves the moderating issues.
"I am glad to hear you are feeling great and having a busy social life. Feeling good again is why we all went through tx. "
Thank you - personally, I felt terrific before starting treatment. I wouldn't have known anything was amiss for quite some time, if I was only going on how I felt. I did treatment because I thought I was pushing the envelope being 20+ years in and being later 40's and not wanting to get interrupted at a time not of my choosing to do treatment. I was lucky enough to find out early in my liver damage and I had choices. I didn't want to wait until I had little to none. As usual, treatment is a very personal decision.
Please!!! Threatening to start another political thread was a joke. Believe me --- I will NEVER start another political thread. I am foolish, but not stupid.
I have no power to bring Meki back. I sent her a PM to see how she is doing. Whether she posts or not is only her decision.
"How does bringing Meki back and starting a political thread have ANYTHING to do with the moderating issues that many seem to think are at the root of the "boring" situation, i.e. the lack of posts on the Social side? That is where it appears what you're asking for is entertainment. That's what spurred me to comment. "
If that were true, why did your first post ignore these issues?
In any case -- have a great weekend. I am off to have some fun.
Actually, I do mention the moderating issues and made a plea directly to MedHelp. You missed it. I also mention that the other forum is quite busy and it's this forum that's slow - I wish there wasn't a reason for the other forum to be busy but apparently there is. Sort of the raison d'etre, is it not? If someone was posting over there looking for support and there wasn't a response in 20 hours, now that's something that would upset me. This forum goes awhile without posts and I don't worry about it much unless it's someone looking for support who isn't getting it. If I haven't seen a YouTube video in over 20 hours, I'm not so concerned.
First, I would like to add my voice to those who have expressed their appreciation to you for this forum. For me it's made a huge difference in my ability to handle my HCV more effectively, and I am extremely grateful for that.
Having said that, I will say the deletion of posts over the last several months have gone beyond religion and politics into the ridiculous.
For example, someone recently posted a study about asparagus and hep C: http://www.medhelp.org/posts/Hepatitis-Social/More-new-research---Asparagus-Has-Potential-to-Benefit-Hepatitis-C/show/1090038
I posted a quote from an old Far Side cartoon, and nygirl posted a response about not liking vegetables. It was all in good humor, but MedHelp deleted nygirl's post (perhaps some vegetarian hit the Report This button?). IMO that deletion was way over the top - and it's deletions like that have led to having to have the discussion we are having now.
I have had a few of my posts deleted. I have also been in a few threads which were deleted. I must admit that if one takes the time to post and sees posts or entire threads deleted that one grows weary of that. Why make the effort?
Cindy, there will never be a solution which pleases everybody; you know that. I do detect a common thread arising in which many here feel that MedHelp could benefit in becoming a little less pro-active in policing of threads.
I have seen excellent threads get removed that were spoiled by a few errant posts.
Why delete an entire thread when only a few posts could be removed?
Next; people who post here need to get some control of their actions. They need to restrain themselves and "own: their actions. Some of the stuff that gets posted has been cr@p. Some was mean spirited, tagteaming of certain groups or people. I don't have the same romantic version of how perfect things were. It never was, it never will be.
The thing is, I think that often times if the moderation becomes too restrictive that some of the joy, humor and excitement of the forum is surgically removed. We all enjoy a little excitement. I'd liken excessive moderation to putting us all on Xanax so we won't fight.
Yes, there may be less fighting, but there is also less joy.
Maybe that is one reason that after sooo many years people still write with a little warmth in the recollection of Rev.
So...... I think it is a question of balance for both sides; members need to behave a little better and then Moderators could ease off of the delete button a little.
I mention it to you Cindy because it could improve your traffic, number of posts and number of continuing active knowledgeable members.
Willy said "So...... I think it is a question of balance for both sides; members need to behave a little better and then Moderators could ease off of the delete button a little"
Well put. It says much of what I feel but can't quite organize.
If we want a less boring place, it is the members who need to do it. Conversely, censorship, beyond that needed to keep civility and the forum a safe place, mires this process.
The members make the forum what it and not the other way around. Maybe this discussion is just part of that process, we need to do our best by our own lights to make this the place it can be. That probably means MH taking a more passive approach. It also means members putting egos aside sometimes for the benefit of allowing the forum to be the place that will be of value to others.
I really appreciate this place and what it has done for me. I hope it can continue for others in the future to bring the information, wisdom, and humor that have sustained me.
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