Aa
PUSHING BUTTONS
Just my opinion ,
Most all of your members here including the ones medhelp has banned, be
it Rev (whom my son really liked) as well as myself, or Trin or DebC or JD
or others that escape me at the moment, have all contributed to the intellect and
compassion that this HCV forums need. All have had a positive influence on my life, when the
good and bad hit. All contributed greatly to other members in need as well.
When I first came here I had no idea what lie ahead, like most people that seek advice and knowledge
Medhelp and members were a life saver and more to me.
My son and I learned so much by reading.....study after study was posted, much by some of your
long standing people that I have great respect for.
Again, the thread that Andiamo posted was not hostile, it was a mere thread in which people
could voice their feelings, and yet you took it down, why is that?
This place is not as it once was, when you can clearly see the thread Andiamo started was
sharing....against no one , attacked no one.
This is disturbing and sad . Medhelp this is going to be a ghost town, and you have no one
to blame but yourselves.
I never considered this forum to be divided on so many issues as you medhelp.
Your rules do not apply to all. Question? can you work with all of us in private? No, you can't.
We are adults, we usually do pretty well on our own. At times things can get heated, but if you take
a look around, so can some of your other forums. (even the special ones that your suppose to be
invited to) not even on your list......like for instance the current events, Bibilical, etc
When you have an open discussion as you had today it would prove to be only healthy
not demeaning as you seem to think.
For whatever reason you deleted yet another thread. You banned another friend again.
Are you going to ban us all if we speak our minds? can this really be helpful?
I don't think so. Are we allowed to say that? I doubt it.
Most all of your members here including the ones medhelp has banned, be
it Rev (whom my son really liked) as well as myself, or Trin or DebC or JD
or others that escape me at the moment, have all contributed to the intellect and
compassion that this HCV forums need. All have had a positive influence on my life, when the
good and bad hit. All contributed greatly to other members in need as well.
When I first came here I had no idea what lie ahead, like most people that seek advice and knowledge
Medhelp and members were a life saver and more to me.
My son and I learned so much by reading.....study after study was posted, much by some of your
long standing people that I have great respect for.
Again, the thread that Andiamo posted was not hostile, it was a mere thread in which people
could voice their feelings, and yet you took it down, why is that?
This place is not as it once was, when you can clearly see the thread Andiamo started was
sharing....against no one , attacked no one.
This is disturbing and sad . Medhelp this is going to be a ghost town, and you have no one
to blame but yourselves.
I never considered this forum to be divided on so many issues as you medhelp.
Your rules do not apply to all. Question? can you work with all of us in private? No, you can't.
We are adults, we usually do pretty well on our own. At times things can get heated, but if you take
a look around, so can some of your other forums. (even the special ones that your suppose to be
invited to) not even on your list......like for instance the current events, Bibilical, etc
When you have an open discussion as you had today it would prove to be only healthy
not demeaning as you seem to think.
For whatever reason you deleted yet another thread. You banned another friend again.
Are you going to ban us all if we speak our minds? can this really be helpful?
I don't think so. Are we allowed to say that? I doubt it.
On the topic of "cured",i personally think the cure for HCV is more of a cure than for any other disease known to man,think about it for a sec,is their a cure for cancer? if so,why all the cancer fundind and rallies...is there a cure for the cold,no drugs cure anything they just treat the symptoms....as far as i feel...the TX for HCV is ,its the only disease that there is a cure for,am i makin sense? maybe not 100% but pretty damn close with the PI drugs....tell me one disaease that has a "cure" rate as good as this?
When Andaimos thread was pulled a made a sarcastic remark referring to medhelp as nazis. I only used that word because I couldn't remember how to spell fascists!
Honestly, I was annoyed and felt they were overreacting so I used an over the top reference.
It still isn’t clear why the thread was pulled but at least it was stated as being an error and has been reinstated.
OH
Interesting and I still battle that comment often. Just 2 wks ago at a womens clinic, the lab tech, that DAILY draws for Hep C. HIV, as well as all others, says to me...."you want a Hep C test?". (seeing it in my records?) I said "sure, I'll have one but I did treatment & mine is gone" (exact word). Her.."it's never gone and you need to be aware your never 'cured, you have it for life'" I said " I HAVE SVR, meaning perhaps a 5%, chance it'll come back, I'd consider that 'cured'. HER: "SVR??"......it went on and on. I told her to do her research and not scare the hell out of people coming through her! Yes, the data above, stats all say we can never be sure there isn't one viron somewhere in us, but can they detect one tiny cancer cell in ones body 5 yrs after 'remission' ? There is always a chance cancer can come back, yet they use 'cured'....and so on. You get my point.
It bothers me how medical people do NOT know what SVR means, yet tell us we're not 'cured'!
Good article, thanks, LL
It bothers me how medical people do NOT know what SVR means, yet tell us we're not 'cured'!
Good article, thanks, LL
First....HELLO all, miss u, miss here. Thankfully I do get e-mails from a few of the ones in mention above, and others, keeping me up on their tx. And I do check in. Part of why I am not here as much, is also due to what Elaine has said above.
I had to voice in here. For Ms. Elaine to be upset, it HAS to be a concern.
I don't know what thread you mean, but I do well remember on my own tx many political and other threads where we all agreed, disagreed, taught and learned from. Back when forseegood was here. They were GREAT threads. There was NO 'abuse' button. We all agreed, or disagreed with grace. The FEW that got out of line, were warned, or a couple even banned, but they were terrible, not just heated. Many have been banned here for things I simply do not agree with either. Freedom of speech, yet ruled by whomever is monitoring that day? For that matter, I have wondered about favoritism towards members? As Elaine said........we have lost some wonderful people here, often for very poor reasons. Med help 'gang' wars contributed to that, while I am not sure who's who in that, I have heard much about it, and being friends with ALL sides. But it IS silly. If I didn't 'like' someone here, I stayed OUT of their thread. There is plenty here to read and MY choice which ones to interact in.
I come and go here now, too busy back out in the world, but but this place, these people, many now gone, were my life line. I still feel like it's 'home' for me,many of us in this disease, battle. So many nights on tx I 'lived' ONLY here, not able to be out in the world. I would have QUIT tx 5 wks, in if I hadn't been here, with many of you.
As I do 'come and go', I have watched it slowly deteriorate to a fraction of what it was when I came here, in people, in knowledge, in posting. 2-3 yrs ago there were tons of post, threads, discussion PER DAY. Now I'll sign in and see 5 post in 6 hrs.NOT how it used to be, which is very sad for all the newcomers. As good as it still is, they are getting 1/2 of what many of is knew it to be here.
I say delete the 'abuse' button, period! If something bothers someone, let them personally message Med Help, rather then hit that thing 20 times! Then, if it is justified, take action. I also say many that are now gone should come back!
Good thread Elaine and good for you!
Love to you ALL.....LL
I had to voice in here. For Ms. Elaine to be upset, it HAS to be a concern.
I don't know what thread you mean, but I do well remember on my own tx many political and other threads where we all agreed, disagreed, taught and learned from. Back when forseegood was here. They were GREAT threads. There was NO 'abuse' button. We all agreed, or disagreed with grace. The FEW that got out of line, were warned, or a couple even banned, but they were terrible, not just heated. Many have been banned here for things I simply do not agree with either. Freedom of speech, yet ruled by whomever is monitoring that day? For that matter, I have wondered about favoritism towards members? As Elaine said........we have lost some wonderful people here, often for very poor reasons. Med help 'gang' wars contributed to that, while I am not sure who's who in that, I have heard much about it, and being friends with ALL sides. But it IS silly. If I didn't 'like' someone here, I stayed OUT of their thread. There is plenty here to read and MY choice which ones to interact in.
I come and go here now, too busy back out in the world, but but this place, these people, many now gone, were my life line. I still feel like it's 'home' for me,many of us in this disease, battle. So many nights on tx I 'lived' ONLY here, not able to be out in the world. I would have QUIT tx 5 wks, in if I hadn't been here, with many of you.
As I do 'come and go', I have watched it slowly deteriorate to a fraction of what it was when I came here, in people, in knowledge, in posting. 2-3 yrs ago there were tons of post, threads, discussion PER DAY. Now I'll sign in and see 5 post in 6 hrs.NOT how it used to be, which is very sad for all the newcomers. As good as it still is, they are getting 1/2 of what many of is knew it to be here.
I say delete the 'abuse' button, period! If something bothers someone, let them personally message Med Help, rather then hit that thing 20 times! Then, if it is justified, take action. I also say many that are now gone should come back!
Good thread Elaine and good for you!
Love to you ALL.....LL
November 3, 2009
Hepatitis C: Curable or Incurable Disease?
Learn about the legitimate reasons to believe Hepatitis C is curable - and reasons to believe otherwise.
by Nicole Cutler, L.Ac.
Since its identification in the 1980s, Hepatitis C has been established as a major worldwide health problem. The gravity of this disease is especially poignant, because an estimated 85 percent of those infected go on to develop a chronic infection. While researchers are continually developing, testing and refining the available treatments for Hepatitis C, there is still considerable confusion over our ability to "cure" Hepatitis C.
As of Fall 2009, the current standard treatment for Hepatitis C is antiviral combination therapy consisting of pegylated interferon and ribavirin. Approximately half of those who are eligible for this treatment are able to achieve a sustained viral response. According to Schering Corporation, a sustained viral response is the inability to detect Hepatitis C genetic material for at least six months after Hepatitis C therapy is completed.
Because it is the best measure we currently have for evaluating the elimination of Hepatitis C, many physicians believe attaining a sustained viral response is the same as a cure. Others exhibit more caution in proclaiming their patients are cured.
Evidence for a Cure
In order for a sustained viral response to be called a cure, the inability to detect Hepatitis C six months after treatment completion must be permanent. Unfortunately, only time and repeated testing can confirm the permanence of viral absence.
Hope for pegylated interferon and ribavirin therapy representing a Hepatitis C cure took root in the Spring of 2007. In a study led by Mitchell Shiffman, M.D., professor in the Virginia Commonwealth University (VCU) School of Medicine, and chief of Hepatology and medical director of the Liver Transplant Program at the VCU Medical Center, nearly 1,000 patients were followed for up to seven years after they achieved a sustained viral response. Their results were the most encouraging thus far that Hepatitis C is curable.
According to Shiffman, "The use of peg-interferon alone, or in combination with ribavirin, points to a cure for Hepatitis C. This paper strongly suggests, for the first time, that Hepatitis C is a curable disease. After treatment, 99.6 % of the patients remained virus undetectable for over five years." In Schiffman's study, eight patients who achieved sustained viral response tested positive for Hepatitis C at an average of two years following treatment completion. However, it is unknown why this occurred.
Reason for Caution
The primary reason that some physicians avoid using the term "cure" in relation to sustained viral response with Hepatitis C, is the possibility of giving false hope.
Our ability to detect the Hepatitis C virus is not absolute. While Hepatitis C tests examine the blood for viral particles, they are not sophisticated enough to be able to test for signs of the virus in other organs, the lymphatic system or other parts of the body where the virus is believed to hide. Thus, it is difficult to know if Hepatitis C is truly eradicated or if a microscopic virion has found a good hiding place.
This doubt exists because there have been cases where people have achieved sustained viral response only to test positive for Hepatitis C years later. In such instances, it is unknown if these people experienced a relapse of the virus or if they were re-infected. People who believe they are cured might assume they can resume liver damaging habits and that they can no longer transmit Hepatitis C. If their liver infection does return, believing they were cured of Hepatitis C could lead to a medical lawsuit. This also explains why anyone who has ever tested positive for Hepatitis C is not permitted to donate blood.
Doctors Disagree
Based on a study published in the April 2008 edition of the Journal of Clinical Gastroenterology, investigators from Georgetown University looked at how many physicians used the term "cure" in their discussions with Hepatitis C patients. They found the following:
· 63 percent of physicians used the word "cure" in 38 percent of visits involving response discussions.
· "Cure" most frequently meant "absolute cure" and occurred more commonly in visits conducted before therapy initiation, and with patients having favorable genotypes.
· Physicians hedged the meaning of "cure" in 29 percent of visits.
These statistics demonstrate that some doctors discuss hope for a cure with their patients, while others are still hesitant to use this terminology.
Defining whether or not Hepatitis C is a curable disease depends on your perspective. If there is fear of false hope, it is premature to consider Hepatitis C curable. However, based on the best measure we currently have to assess the presence of this infection, there is a 50/50 chance of curing Hepatitis C. Obviously, this debate has not yet been settled. Nonetheless, more and more people are achieving a sustained viral response and remaining free of the virus for increasingly longer periods of time. As this trend continues and improvements in testing are made, more doctors will be convinced that curing Hepatitis C has become a reality.
References:
http://hcvadvocate.org/hepatitis/factsheets_pdf/Brief_History_HCV_2006.pdf, A Brief History of Hepatitis C, Retrieved October 29, 2009, Hepatitis C Support Project, 2009.
http://nationalhepatitis-c.org/kevdialogue-hm.htm, Although A True Cure May Be Elusive, There is Still Hope for Controlling Hepatitis C!!!, Kev Krueger, National Hepatitis C Coalition, Inc., 2009.
http://www.crossbennett.com/CM/Articles/Articles148.asp, Hepatitis C Virus Information, Retrieved October 29, 2009, Cross & Bennett, LLC, 2009.
http://www.csmc.edu/10698.html, Hepatitis C, Retrieved October 29, 2009, Cedars-Sinai Health System, 2009.
http://www.medicalnewstoday.com/articles/71704.php, Hepatitis C Cure Announced By VCU Researcher, Retrieved October 29, 2009, MediLexicon International Ltd., May 2007.
http://www.ncbi.nlm.nih.gov/pubmed/18277894?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2, How physicians describe outcomes to HCV therapy: prevalence and meaning of "cure" during provider-patient in-office discussions of HCV, Hamilton HE, et al, Retrieved October 29, 2009, Journal of Clinical Gastroenterology, April 2008.
http://www.pegintron.com/peg/application?event=content_display&event_input=avoiding_relapse&namespace=main, Avoiding Relapse, Retrieved October 29, 2009, Schering Corporation, 2009.
Hepatitis C: Curable or Incurable Disease?
Learn about the legitimate reasons to believe Hepatitis C is curable - and reasons to believe otherwise.
by Nicole Cutler, L.Ac.
Since its identification in the 1980s, Hepatitis C has been established as a major worldwide health problem. The gravity of this disease is especially poignant, because an estimated 85 percent of those infected go on to develop a chronic infection. While researchers are continually developing, testing and refining the available treatments for Hepatitis C, there is still considerable confusion over our ability to "cure" Hepatitis C.
As of Fall 2009, the current standard treatment for Hepatitis C is antiviral combination therapy consisting of pegylated interferon and ribavirin. Approximately half of those who are eligible for this treatment are able to achieve a sustained viral response. According to Schering Corporation, a sustained viral response is the inability to detect Hepatitis C genetic material for at least six months after Hepatitis C therapy is completed.
Because it is the best measure we currently have for evaluating the elimination of Hepatitis C, many physicians believe attaining a sustained viral response is the same as a cure. Others exhibit more caution in proclaiming their patients are cured.
Evidence for a Cure
In order for a sustained viral response to be called a cure, the inability to detect Hepatitis C six months after treatment completion must be permanent. Unfortunately, only time and repeated testing can confirm the permanence of viral absence.
Hope for pegylated interferon and ribavirin therapy representing a Hepatitis C cure took root in the Spring of 2007. In a study led by Mitchell Shiffman, M.D., professor in the Virginia Commonwealth University (VCU) School of Medicine, and chief of Hepatology and medical director of the Liver Transplant Program at the VCU Medical Center, nearly 1,000 patients were followed for up to seven years after they achieved a sustained viral response. Their results were the most encouraging thus far that Hepatitis C is curable.
According to Shiffman, "The use of peg-interferon alone, or in combination with ribavirin, points to a cure for Hepatitis C. This paper strongly suggests, for the first time, that Hepatitis C is a curable disease. After treatment, 99.6 % of the patients remained virus undetectable for over five years." In Schiffman's study, eight patients who achieved sustained viral response tested positive for Hepatitis C at an average of two years following treatment completion. However, it is unknown why this occurred.
Reason for Caution
The primary reason that some physicians avoid using the term "cure" in relation to sustained viral response with Hepatitis C, is the possibility of giving false hope.
Our ability to detect the Hepatitis C virus is not absolute. While Hepatitis C tests examine the blood for viral particles, they are not sophisticated enough to be able to test for signs of the virus in other organs, the lymphatic system or other parts of the body where the virus is believed to hide. Thus, it is difficult to know if Hepatitis C is truly eradicated or if a microscopic virion has found a good hiding place.
This doubt exists because there have been cases where people have achieved sustained viral response only to test positive for Hepatitis C years later. In such instances, it is unknown if these people experienced a relapse of the virus or if they were re-infected. People who believe they are cured might assume they can resume liver damaging habits and that they can no longer transmit Hepatitis C. If their liver infection does return, believing they were cured of Hepatitis C could lead to a medical lawsuit. This also explains why anyone who has ever tested positive for Hepatitis C is not permitted to donate blood.
Doctors Disagree
Based on a study published in the April 2008 edition of the Journal of Clinical Gastroenterology, investigators from Georgetown University looked at how many physicians used the term "cure" in their discussions with Hepatitis C patients. They found the following:
· 63 percent of physicians used the word "cure" in 38 percent of visits involving response discussions.
· "Cure" most frequently meant "absolute cure" and occurred more commonly in visits conducted before therapy initiation, and with patients having favorable genotypes.
· Physicians hedged the meaning of "cure" in 29 percent of visits.
These statistics demonstrate that some doctors discuss hope for a cure with their patients, while others are still hesitant to use this terminology.
Defining whether or not Hepatitis C is a curable disease depends on your perspective. If there is fear of false hope, it is premature to consider Hepatitis C curable. However, based on the best measure we currently have to assess the presence of this infection, there is a 50/50 chance of curing Hepatitis C. Obviously, this debate has not yet been settled. Nonetheless, more and more people are achieving a sustained viral response and remaining free of the virus for increasingly longer periods of time. As this trend continues and improvements in testing are made, more doctors will be convinced that curing Hepatitis C has become a reality.
References:
http://hcvadvocate.org/hepatitis/factsheets_pdf/Brief_History_HCV_2006.pdf, A Brief History of Hepatitis C, Retrieved October 29, 2009, Hepatitis C Support Project, 2009.
http://nationalhepatitis-c.org/kevdialogue-hm.htm, Although A True Cure May Be Elusive, There is Still Hope for Controlling Hepatitis C!!!, Kev Krueger, National Hepatitis C Coalition, Inc., 2009.
http://www.crossbennett.com/CM/Articles/Articles148.asp, Hepatitis C Virus Information, Retrieved October 29, 2009, Cross & Bennett, LLC, 2009.
http://www.csmc.edu/10698.html, Hepatitis C, Retrieved October 29, 2009, Cedars-Sinai Health System, 2009.
http://www.medicalnewstoday.com/articles/71704.php, Hepatitis C Cure Announced By VCU Researcher, Retrieved October 29, 2009, MediLexicon International Ltd., May 2007.
http://www.ncbi.nlm.nih.gov/pubmed/18277894?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2, How physicians describe outcomes to HCV therapy: prevalence and meaning of "cure" during provider-patient in-office discussions of HCV, Hamilton HE, et al, Retrieved October 29, 2009, Journal of Clinical Gastroenterology, April 2008.
http://www.pegintron.com/peg/application?event=content_display&event_input=avoiding_relapse&namespace=main, Avoiding Relapse, Retrieved October 29, 2009, Schering Corporation, 2009.
Sweet Elaine,
Of all people, I find it so hard to believe you were ever given even a warning as you are always so warm and helpful.
They did reinstall Andiamo's post though they never said why it was pulled other than it was an error. Whether someone hit the abuse button and the moderator overreacted or what, we don't know and they aren't telling.
I received a warning for sarcastically calling them nazis after Andiamo's thread was pulled. ( Do you envision a sweater falling apart from a pulled thread? I do.)
However a good dialog ensued via email and hopefully for those coming here in the future this place will improve.
big hugs, OH
Of all people, I find it so hard to believe you were ever given even a warning as you are always so warm and helpful.
They did reinstall Andiamo's post though they never said why it was pulled other than it was an error. Whether someone hit the abuse button and the moderator overreacted or what, we don't know and they aren't telling.
I received a warning for sarcastically calling them nazis after Andiamo's thread was pulled. ( Do you envision a sweater falling apart from a pulled thread? I do.)
However a good dialog ensued via email and hopefully for those coming here in the future this place will improve.
big hugs, OH
I don´t think this is a thread but private message Elaine sended to MH.( check the date)
I and Marcia are looking for another thread( not a pm to MH) that was about that we are gonna be allowed to moderate the forum ourselves!!
ca
I and Marcia are looking for another thread( not a pm to MH) that was about that we are gonna be allowed to moderate the forum ourselves!!
ca
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
