""comments pertaining to hepatitis information"""
I carry this virus that has affected every part of my life, from relationships with my family and husband, to my ability to keep a job to my sense of humor and fair play. Pleases define "comments pertaining to hepatitis information" for me. I am ready to give it a fair chance, but would like to know the rules.
The Hepatitis Community Forum (see top of this page for link) is for sharing support and non-medically related discussions/conversation.
This forum (Hepatitis) is for posting MEDICAL QUESTIONS, the LATEST RESEARCH INFORMATION and MEDICALLY RELATED HEPATITIS DISCUSSIONS ONLY.
Hopefully I've explained the difference. If not, please let me know.
Med Help International
After carrying the virus for 30 years and going thru IFN tx, I have bad brain fog (empirically determined, not medically proven) but I am still NOT sure I understand the difference between the two forums. It does not matter, the effect to separate the two has "chilled" my feelings about speaking out here. When I find the latest research and want to share it strickly for support, I will be very confused about where to go. And fearful I have chosen the wrong place.
Good luck on the endeavor, I will continue to do as I always have, use my best judgement. But as I am human, I am sometimes guilty of being unable to find my best judgement, when I have news that elates me, or I discover facts that crush me. So as with everything related to the virus, I can learn to "tread lightly." Just wish I didn't have to.
I think that will ruin the forum to try to split it up into only research vs all other HCV related issues. There is no way new people will comprehend it, they will just become more confused. I dont understand why that was done nor do I think it will benefit anyone. This seems like a bad idea to me.
I totally agree with Willows and Kalio.
If we post a study/research on this board, does that mean we have to go to the other board to discuss our personal issues with it? In this forum we typically interwine the personal and research. Why is this going to change? I think it won
Perhaps they're making one pay, and the other free??? (Just wild speculation)
I don't understand it, either.
I think Med Help is trying to help us with this dichotomy. I find the respondents in this forum 99% responsible to seeking the truth about hepatitis per se, compared to many, many other forums I have experienced, such as stock investment forums, where people are more concerned with "who" is right rather than "what" is right. I love the people of this forum.
This forum's "output" if you will, has helped me immeasurably.
I think the "community" forum is suggested by Med Help to allow us to differentiate between medical facts, including clinical facts--brain fog, lack of focus, itching, nausea--and interpersonal issues not related to symptoms and/or science known empirically about hepatitis.
This forum seems to involve two groups, pre- and post-tx hepatitis individuals. The pre-tx are undergoing huge emotional experiences brought on by fear of the disease and those brought on by the horrible side effects of the drugs, such as IFN anger and victim mentality.
I get the feeling that Med Help possibly feels a crisis is brewing from the inate, "possibly" dysfunctional attributes of IFN side effects, as real, legitimate and important as they are to participants of this forum.
I get the feeling that Med Help is "not" saying that IFN anger and emotion are not part of the current forum as "symptoms" to discuss as clinical facts; but they are asking us to "try" to separate the "interior issues" of IFN anger from the anger itself as a symptom. Symptom anger, I think Med Help is saying, is very legitimate for this forum; but the "subject(s)" and issues the anger focus, belongs in the "community" forum.
I have seen the preoccupation with "who" is right destroy forums that were/are--at one time--beautiful, helpful, needed forums. I think this plan would help us be more responsible for "focusing" on the mutual help we give each other about "what" is right about the facts and symptoms of hepititis/tx.
I agreed with both sides of the recent dialogue regarding "personal" issues. The clinical elements of the hepatitis experience, per se, are just as legitimate as the "venting" needs of the hepatitis experience. I think this is all Med Help is trying to accomplish. We all can visit both forums, depending on our interests.
If we do not discipline ourselves, with separating the two, it is very possible this wonderful group will migrate and lose what we now have. We can avoid this possibility, in my opinion, if we take the "who" is right issues to the "community" forum and keep the "what" is right direction in the current forum. This is absolutely all I have to say on this subject.
This currently is the best forum I have experienced on the web. Thanks to us all, WillPower
Does that mean the ol' Rev left the building? LOL
So what is going to stop people from bring up collidal silver and studies on alcohol and pot onto the reseach forum? Aren't these valid research questions? As we know this really sets off members here, so if trying to avoid anger and disagreements, I don't think this will happen by splitting the two.
Even if this were the case re; complaints about you, why would splitting the forum help? I have my doubts it is about you, but rather people who want to get rid of the "hi Susie, how are you?" and so called stupid questions. I think as I posted above, those of us who get angry by posts will continue to do so on either forum.
I guess I'm in the minority, but I think the new guidelines and the new support forum are a good idea. I don't think Medhelp is going to come down on anyone who occasionally drifts into some casual talk on the med forum. I think they just want the Medhelp Hepatitis forum's scope to be primarily about, uh, "medical help for hepatitis". Seems pretty simple to me, and speaking for myself I like that it focuses on the more technical aspects of treatment and research. There are tons of other HCV support forums already out there, this one is special because of the relatively high level of discourse for research/treatment issues (especially now with our friend HR's contributions). I'd like to see that part preserved and bolstered, and if there's another supplemental forum for more human support issues/casual talk, then I don't see why that would pose a problem.
Just my $0.02, don't shoot me!
I know that riba rage...I've bitten off more than my fair share of heads, unfortunately in person, not the forum. I also doubt any of this is about tx rage. It happens before, during and way after tx that civility suffers here. I just don't think splitting is the answer.
I was joking you about the Elvis comment you brought up, you know that, I think you have been a great support to all lately.
Murphy's Law: Anything that can go wrong will go wrong no matter what.
This forum is good and helps a lot of people as is, it is better than going to a shrink/Hep doc at the same time. If it ain't broken don't fix it.
I think you can't blame interferon if you aren't even taking interferon.
I also think having any diesease is no excuse for really out of bounds behavior that you display only because you can.
It's just an excuse.
I think what will occur is that the forum which we have become accustomed to will continue essentially as it is now, only there will be less pure chit chat. I doubt very much that personal exchanges will come to a screeching halt and I wouldn't like it if they did. We are humans, notwithstanding the HCV & its attendant treatment, and we'll continue to interact with one another and it won't be on a purely scientific/research basis either. But, hopefully purely social threads will have a home now and won't distract us from why we are really here which is to learn about HCV and offer support and compassion. I think we'll survive and get better but as I have said so many times - I'm a perennial optimist. Mike
Please. I love this place, always have. Like my real life, mix of good info, bad info, funny people, angry people (some chemically induced, I once kicked the closet door and broke my foot, riba rage.......is the foot a victim needing support or needing info? Which board? or just me acting badly). All of us here legitimately deserve the right to be UPSET, we have a freaking virus necrotizing our livers, constantly. Tweaks me a lot at times.
Sometimes I want to cry, over new legitimate information. Where do I go?
Sometimes, I get a laugh here that releases endorphins and I feel so good. Where do I go?
I can do HARD things, I live with the virus. I can try to split what I'm thinking and posting and feeling. But if I was a newbie, well, that would be sad. One sterile place, full of info, like a paper brochure, no support to cushion the impact of the new info. Another place to talk and support, but no info. A newbie is told to go to yet another site for info. Poor newbies.
Who's winning here? My life is full of bad news and bad words. Full of conflict and determination. This board captures it all. Offends me and delights me. If I was a newbie, I would be grieving what I am losing. The unique human ability to blend curiosity, research, humor, sorrow, facts and expressions, get hurt feelings and then get over it.
I'm mad and wailing sad, I think I'm losing something, but I'm so confused, I don't what that is EXACTLY.
Sharing support and posting medical comments and questions overlap so often that distinguishing which forum to post will be confusing. This forum works well as it is.
Here is a suggestion to improve this forum; have a hepatolgist post comments once a week to clear up discrepancies or to share treatments and research.
The "new" format is awful. I know a lot of sites ue it but I don't like those at all. This format is much better.
Now you have to click on some subject to see the posts, one great thing about here is you have the threads all listed and you can scroll.
After reading all the responses, I vote to keep the original format and not to split into two parts.
I like the new and improved Rev too ;) Now for the "new and improved forum, we shall see. Are we supposed to just MOVE over there and leave all these questions here? Doesn't seem it will work very well.
I tried to post over there but you first have to register your user name and then password but I did but still can't get over there. Anyone else having problems?
I wish anyone luck on their new endeavors, really...but after being on the planet for 53 years (ugh!, 53! how did that happen! and just imagine, I used to shout those words to the Who song, "hope I die before I get old!" what a putz!) .... I just think that one or the other of these "new and improved" forums is going to end up being much like this one, whatever that is, with the other, more "clinical" forum having a few lonely little research posts, etc....along with, of course, the members of the forum who are the more "analytical" of us, debating medical issues on that forum...
Just a prediction, not a hex...maybe these two "new" forums will work out just fine with or without my input...anyway, I guess I'm up for trying new things, I used to wear high-heels and leggings once..(another "ugh!"...)
I think another good idea would even be a "third" forum, for the *misbehaving members* to be banished to....these said "merry makers" can get their ya ya's out on the Naughty Forum, till they calm down and can be let back in to the 1st or 2nd forums...
Better than a "time out" or ban....and infinitely more entertaining....(and believe me, I think I should be banished, from time to time, to the Naughty Forum, I made a post last night where I was real "uncomfortable" having pushed the send button)...and we could all look on in the Naughty Forum, and wonder if it's going to "Lord of The Flies" or "Teenage Drunken Slumber Party" from day to day....whatever, as usual, I'm getting ahead of myself...I guess this very post could be designated for the "Community Forum"...if I have a beat on this at all...
btw, I kinda like this "new and improved" Rev...looks like youre not going to be "King of the Naughty Forum" anytime soon....:))
Does anyone remember your password? I have never been able to remember it. I know others have had that problem. Too bad we can't change our passwords to something we remember.
No lol I never remember mine and always have to have them resend but once you ask for your password,,,in your email box in a minute...