A queston for Medhelp

[Andiamo1]

I have been reading this forum for many years and posting for two.  I see a noticeable increase in deleted posts and the marked absence of many of the most helpful posters.  I had disagreements with some of them, but their absence is my loss.

Why are you doing this?  A forum can be moderated or not, but this forum seems  in between and uses arbitrary rules.

Most of us take mind altering drugs; we need guidance sometimes when we are out of line, but threatening and banning are not helpful.  This is a support forum for adults.   Sometimes we are so overwhelmed by the drugs that we do not behave as adults, but that is rare.  

If you apply arbitrary rules and let trolls post at will and you ban the people that complain about the trolls, you lose the respect of the forum members and you, medhelp, will lose in the end.

If you feel the forum has to be moderated, then supply a moderator that understands the forum and the problems of the participants.  

[jdwithhcv]

Well said.  I agree wholeheartedly.

jd

[GreatBird]

Me too.

[Isobella]

I third the motion.

[HCA]

I agree with all your points.
I have perused some of the other forums,one of which (not difficult to work out which) is totally dominated by trolls some of whom are obviously using multiple screen names.
Taking a tough line with trolls in the Hep C forum has quietened them down,as they don't post if they don't get attention.
I was shocked to learn that certain responsible people have been booted for shooting down trolls.
Let's get back on track!

[R Glass]

This is one of the reasons I don’t post much anymore. I have never been involved with any “Click” but have observed how they have ganged up on members and then reported the victims to M.H. when they retaliated after being provoked. This resulted in losing some great assets.
It saddens me because I know for a fact that me and several other members would not have made it through tx if it was not for this forum.
I agree we need a moderator but it would have to be one that has been through tx and has an unbiased cool head.

[mikesimon]

I agree with all of the views expressed her.
This forum helped save my life and I know that, if it had been like it is now when I was in need, I wouldn't stayed and benefited as I did. I would have been in deep trouble.
I too have been reluctant to post much lately for the reasons already so eloquently expressed.
Mike

[Rockerforlife]

I got booted from my job....now all i need is to get booted off this site...when they say life is unfair and to get used to it???...this is putting it mildly.....i am goin thru hell...i may end up homeless in a few months...if i cant handle the courses in college and ther is no jobs anywhere here....i will lose all i have....can you imagine how i will feel if im told i didnt SVR.....i have a bumpy road ahed of me and my shock absorbers are getting very worn out and thin

[Isobella]

Kinda the point.....we are here in various stages, pre-tx, post-tx and enduring tx.  

We all know the positive impact MH has had on us.  We all want to help others the way we have been helped.

If we continue to get picked off in favor of trolls.......well, that thought just makes me sad.  

[can-do-man]

I agree with most of whats been said. I think who ever med-help put at the button is WAY to trigger happy. As for a moderator if its some one already here then the problem only gets worse. Over time friendship forms, some are liked, some not so much so the problem just gets worse.

Hep-c forum made med-help what it is today but it seems a couple people have either forgot that or don't care there anymore.

[Med Help]

Hi,

We've said this to a few individuals that email contacted us privately, and I'll repeat it here. We do not treat the Hepatitis communities any differently then we treat other communities. I'm sure it feels like we do because you're familiar with the members and posting, however, every community is treated the same. If violations are reported to us by other members, or if members insist on continuing to violate terms even after we've warned them several times, such as personal attacks or creating multiple IDs, we are going to need to take action. We don't threaten members, but we do issue warnings when they are violating a rule. We also disagree firmly that we are "picking off" members. Any member that has been banned, across the entire site, not just these Hep communities, was banned after several warnings telling them to stop what they were doing. When someone is banned, they should certainly not be shocked it happened and it happened for a good and repeated reason.

Nothing would make us happier than not having to moderate at all, but unfortunately, that's not possible. Everyone needs to take a step back, look at the behavior that's causing the warnings and/or deletions, and instead of saying the deletions are the problem, get back to helping each other out with this condition.

MedHelp - Harry

[R Glass]

“We do not treat the Hepatitis communities any differently then we treat other communities”

Here lies the problem. If the SX from TX were understood along with Post TX Recovery, you would clearly understand that this forum is not like other forums.

[Med Help]

Hi,

We understand every forum is different. However, our rules are not complicated and we do not feel they are unreasonable. If someone who is going through chemotherapy for cancer, or through withdrawal from an addiction, or is suffering from any other of the unfortunately endless incurable diseases like MS, or Diabetes or HIV can follow the rules, so can someone going through Post TX Recovery. I by no means am saying that's not a very hard and intense recovery, I am simply saying people in many communities are going through or living with extremely trying recoveries and conditions.

All we ask is treat each other with respect. Disagreements are fine, and across this site plentiful. We realize there are heated topics in Hep C, but this isn't unique. Maternal & Child disagree over abortion, Addiction disagrees of suboxone, there's disagreements over religion or over alternative medicine vs. traditional medicine. Everyone on this site is experiencing some kind of health condition, otherwise they won't be here. That's stressful and in some cases controversial. We know that. But disagree without attacking. Disagree respectfully. Disagree without making it personal. If what the person wrote is outrageous, or an attack of its own on your community, instead of firing back, report it. If members do that, almost all of these problems will die down.

First and foremost MedHelp is here to help people with a condition, and in this case, it's Hep C. Personal attacks and fighting create a hostile environment. A hostile environment quickly begins to overwhelm and drown out the good posts and the good members that are trying to help. Keep in mind, we don't just sit around and read everything that is written. There are thousands of posts each day on MedHelp. If we're reading it, someone else is complaining.

Harry

[FlGuy]

Harry,

"If we're reading it, someone else is complaining."

But, just because someone complains should not mean that the post in question should be deleted.  One point of view does not a controversy make.  Just because someone does not like the post does not mean that the post is wicked, cruel or nasty.

[portann]

I have sent you over seven messages concerning the recent situation here. Unfortunately, I have yet to hear back from you.

Your post on this thread fails to address the crux of the problem, namely the trolling.

You failed to ban a troll who by his own error and admission posted via two identities in his own thread, with the intent of causing a stir.  This troll actually may have had had four identities on the board in the past month.

I feel MH has let us down.  This thread shows eloquently that I'm not the only one. Why would you clamp down on an innocent comment such as "Is school out?" while disregarding the insulting effects of  transient drive-by posters, who foist on the rest of us the spurious details of their sexual misadventures.

MH was truly my second home throughout  treatment and I could not have survived without it. We grew so close here and I, for one, tried very hard to not shut the door on anyone.

[Andiamo1]

Thank you for participating in a dialog with us.

Some excellent points have been made:

We are taking a drug that is a powerful psychoactive drug.  It makes us hot tempered, paranoid and depressed.  I think you have to take that into account.

Trolls get their jollies harassing us with sexual exploitation and stories about how wrong it is to treat with the the only available drugs.  Punish the trolls, not the people that try and call them out.  Cut us  some slack that you don't give to the other forums, since we are handicapped by the drugs we are taking.

If you want to moderate this forum, at least get someone that has treated with Interferon and Riba to help with advice.

Thank you for listening.

Eric

[Willy50]

When members decide to moderate.....
when members decide who is a troll.....
and take the action, in effect, of a moderator
they are on very thin ice and possibly performing a task that is not theirs to perform.

It's true that many people appear to be compulsive or obsessive in attempting to get information (over and over and over), but that makes them sick.  To some extent, it also makes them normal.  Who here was not very scared when first diagnosed?  

In HIV forums there is post after post about exposure and a rapid onset of symptoms or symptoms which persist even after a negative antibody test...or PCR which disproves infection.  Are concerned.....or obsessive....or uninformed people *trolls*?  Picture if you will, your own child....14 years old trying to get information....... or a foreigner....... or someone with less advantage than many of us have.  I've seen people treated very rudely.  I understand it because to some of us the situation seems unreal...... or stupid....or that possibly we are being "played".  

The deal is.....we DON'T have the ability to discern who is "real" and who isn't.
(and that has been proven several times on THIS forum, right?)

We also don't have the right to step in and treat them as a spammer, troll, multiple account member, or obsessive compulsive.

Yes, there may be some but we don't get to label them "real" or not.  You may be right sometimes...... but what of the people who are incorrectly labeled?  

I think that the forum succeeds when people do what they can to do to help people.  It often fails when members decide to act as moderators.  

I think that some of us end up feeling reactive when people come on with the supposition that HCV is readily sexually transmitted or that we are sexual deviates (how we got infected, right?  ; ) ).  If we can't be objective and non-emotional in answering such questions it's best to not answer.  

Understand, I feel empathy for a terse response rebutting nonsense, but such responses are not helpful and really only make the forum look unfriendly, rude or opinionated.

MedHelp, thanks for NOT deleting this thread.  I think that many things being said NEED to be expressed.  Communication is what boards are about.

Willy

[Andiamo1]

You are a very brave man and that attitude will stand you well in life..

I wish you the best.

Eric

[alagirl]

Wow.  I had no idea this was going on.  I wondered where many  people were when I came by today.  In my opinion, the hcv forum has, in the past, been the strongest forum with the best medical advice/research available BECAUSE it was allowed to moderate itself.  There were members I disagreed with strongly who I feel were very valuable to the site.  The knowledge that was available here saw me through treatment.

[portann]

I suppose when someone rubs up against me on a crowded bus, you would say I have to give him the benefit of the doubt. I prefer to give him a good,hard slap.

[Andiamo1]

I ask that you put yourself in the shoes of someone treating; every stare is a threat, every noise an attack.

We try to post and help someone and a post appears that is simply trying to scare everyone.  The post is almost always from someone that just joined the forum and we assume they are a troll.  If you are not treating, you might not make that assumption.

I only hope that people that have never treated with Interferon/Riba, put in the effort to understand that these drugs are different from most other drugs; different in the way they change our personality.

And we might make an error and call someone a troll when they are not.  If a decision has to be made to toss someone, then toss the person that makes frightening or sick posts over and over and let the short tempered people treating with interferon stay on the forum; especially when they have been valuable contributors for many  years.

[GreatBird]

Based on what I have witnessed, posts that are controversial but not abusive have been deleted on several occasions. It is my opinion that complaints are being lodged when a discussion becomes heated. That does not violate the MH terms as I read them.

[lapis]

Yes.  Communication.  I do not post a lot but even I have been warned about a comment that was made innocently.  That warning made me more reluctant to share my knowledge and experience with others on the forum.  

There are so many challenges here, and I appreciate seeing them laid out, and having this opportunity to discuss them as a group.  

I would also like to acknowledge the incredible support provided by folks on this site during my treatment, and I too want to pay it forward.  

How can we work this out?  Is there a way we can compromise?  Perhaps a "report trolls" button : )  Maybe there is another way to handle complaints about posters.  Brainstorming here...

Eric's idea of a moderator who has undergone this treatment would be a good consideration.  It's not that we think we're special, but no one else understands how these meds make a person feel.  I've been a nurse for many years, and I could never have imagined the experience of my 24 weeks of treatment.  The medicines can make people very very ill, and folks who have had these same symptoms can give life-saving advice and compassion like no one else, because no one else can imagine it.  I say that to you not only from the role of the patient but as a nurse also.  I watched my body, skin, hair, vital signs, everything, completely change over that period of time.  It is a crazy experience.

When our treatment period is over, most of us feel well again over time, and it's important for folks who are treating to get that information too.  Support during this time is so needed.

The long-time posters here are have invaluable knowledge which people who are treating need to be able to access via this site.  Please help us to resolve this so that those folks will continue to help others through you.

[Med Help]

Hi,

Just as an upfront here, I can't go into specifics on any particular occasion, members, etc. That said, to address a few of the points made:

- When I said "someone else is complaining" my only point is, the only reason we read most posts is because a complaint is lodged. We look at every complaint and then decide whether to act or not. That said, once we are looking at it, if we do see something, in most cases here, it's a personal attack, we need to act. However good intentioned some of the harsher corrections or replies are meant to be, and even if they are factually spot on, the manner they are being delivered in IS offending someone, in most cases several members who report abuse on it.

- I'll be the first to admit, we do make mistakes in some of the stuff we delete. We're not perfect and never claim to be. However, I think we do as well as we can. Typically, if we delete something leaning on the innocent side, it's usually due to being in the middle of a ton of other activity. If a thread is heated and we're getting complaints every 5 minutes about it, we're going to delete anything remotely offensive in there to stop it, or just delete it entirely. If you feel we made a mistake, send us a contact us and, it may take some time, but we will get to it. But, on these, it needs to only pertain to you and your involvement in what happened. For privacy reasons, we will not discuss other members with another member. Simply, you wouldn't want us telling someone about you, so please don't expect us to talk about someone else with you.

- Trolls. You are hitting on the problem with trolls yourselves. Anyone can suspect who a troll is, but you can't be 100% sure someone is a troll. In addition, trolls have many definitions, and some people consider trolls anyone who repeatedly disagrees with them. We consider trolls, people with no interest in helping, usually don't have the condition and who simply are here to "stir the pot". We have some tools that give us more information than you have, but even that is not perfect. We know that. All we can do with trolls is watch them, see what they do, and then act once they do something wrong and/or slip. Trolls are not a hep c issue, they are an internet community issue. Every community has to deal with them, and unfortunately, you can't escape them. But, we have 15 years of experience with them, and we know what to watch for, and we have triggers in place to alert us to them, sometimes even before they post. A lot of times you guys are spot on with finding the trolls, and a day or week or maybe a month later if they are a good one after you inform us, they trip, and we can act. But until then, we can't risk banning totally legitimate members that "could" be a troll. And, until then, you can't attack them. Ignore them. Correct them. But just don't attack them. The irony of everything is, trolls exist to upset you. They *want* you to start fighting, yelling and arguing. When you rise to their bait, you're giving them what they want. We just ask you to report is, stay patient, and let us monitor them. I realize this isn't perfect, but no community has figured out the answer to the troll problem yet. (that said, we do have some new features coming that will help some, but a few months away)

- Finally, as far as self-moderation, you're right that we do not have a Community Leader here. This is not from lack of trying. We've been politely, and understandably turned down a few times. I think the reason is what we are discussing here. There are a few too many arguments, emotions and controversy involved here, that a member will be put in the awkward position of having to take a side in some cases. It's one thing for *us* to make a decision over what stays or goes, since we're the operators of the site, but it's a little unfair to put a member in that position when things are so tense. We're obviously very open to the idea, we have almost 100 CL's across the site, but we don't want to throw a terrific member into a situation where they'll fail, and right now, especially with tensions so high, I believe that's the case.

Here's what I will promise on this. I've already told the moderators to be sure to try and look bigger picture and get more context in here. We can let some of the more heated stuff go longer, and see if it can get wrapped without getting personal on its own. With that, we need the personal attacks, which have really stepped up the past 2 months to stop. If it gets personal, we need to act. And to be clear, we do not ban someone because of a personal attack, so even if it gets heated and you slip, it will just be a warning. But, if it's repeated, over and over, ignoring our warnings, that's where we need to suspend and ban. The only members I want to ban are spammers and fakes. We do not enjoy banning members who are trying to help but just can't do it without hitting others in the process.

Harry

[Andiamo1]

Thank you again for listening to us and trying to understand our problems.

The one thing I ask you to consider is the psychoactive properties of Interferon/Riba that cause us to be impulsive and angry.  I will be happy to send you the warnings provided by the drug company in order to give you a better idea of their impact on us.  The net result of this is that these drugs make it difficult to hold our tongues!

I have been off the drugs for 15 months now, and I am finally starting to feel normal.  I have stopped fighting needlessly and regret some of the fights I have started here and at home.  The main point is that it took 15 months post treatment for me to start feeling normal and I am sure most people fall in this category.

Aside from prednisone, I am unaware of any form of chemo that is as powerful a psychoactive as the drugs we take on this forum.  I do believe that we deserve some slack in this area.

Instead of a permanent ban for long standing members, how about a temporary one that is a cool down period?  I started this post because some very productive and helpful people are no longer posting.  

Eric