- This topic has 363 replies, 36 voices, and was last updated 8 years, 3 months ago by
.
-
I don’t post in this thread very often but felt the need to make a couple of hopefully constructive comments.
– Sometimes the line between what is propaganda and what is freedom of information can appear blurry. We need to be aware of not falling into the same trap as those we are criticising.
– While posting photos and name calling of people whose behaviour we find abhorrent no doubt results in release of some frustrations at what they are perpetrating, I suspect it is not in the best interests of either ourselves or those we are trying to inform.
– On the other hand, highlighting how they manipulate information such as the rules of their site and commenting on how they use those rules and other means to peddle their own misinformation are valid approaches to spreading the word to a larger audience.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hieupham wrote:I visited there yesterday and replied to Tony’s message -who wanted help for treatment ” I AM AT THE POINT WHERE I AM WILLING TO SPEND ALL MY MONEY TO JUST GET CURED.”
I did not want to be banned so I tried not to mention about generics. I advised him to “Google” more information about HepC and guess what, JOY sent me a message:H1PHAM said…
Just “Google” to learn more about the bugger in your body.Hi, HP . . just wanted to welcome you and let you know that our Webpage is a wonderful source of accurate, easy to understand information about this nasty virus and how to deal with it. You can check it out by clicking on the ‘Web Page’ tab just above on the left. We are big fans of helping ourselves and others become ‘educated patients’ . . and also advocates of accuracy and not ‘scaremongering’ . .
Is there a problem with Googling?
I would think that googling is going to be more effective that following her advice. The Web Page link doesn’t work because someone has put a hyphen between ‘Hepatitis’ and ‘Central’ making it invalid. This is probably fortunate for her as if the link worked it would take people to the http://www.hepatitiscentral.com/ commercial website which has several news items/article about FixHepC and Dr James Freeman. (None of which carry big red warnings.
) I have attempted to notify her and others on her site of the error in her web page link and have requested that it be fixed but given that my several guises are all moderated or banned over there i don’t seem to have been successful. 
So the next approach was to let the commercial site Hepatitis Central know that the forum that they direct their readers to has a problem with the link back the other way. Initially that was a problem as the commercial site doesn’t appear to have any contact information but then I found out they are owned by the Natural Wellness company whose details are here.
Admin Contact
Name: Morris Cohen
Organization: Natural Wellness
Mailing Address: 122 Ogden Ave, Dobbs Ferry New York 10522 US
Phone: +1.8009557070
Ext:
Fax:
Fax Ext:
Email:fred@naturalwellness.com
Tech Contact
Name: Morris Cohen
Organization: Natural WellnessSo I’m currently hoping that Fred complies with my request and passes my email on to their Technical contact Morris Cohen (who also appears to be the owner of Natural Wellness) and maybe he can assist Joy to resolve the issues with the web page link between the two sites.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
This one “Hepatitis C Forum of Hope” is just …sad. Truly sad, as in heartbreaking. No other words for it.
The following post has been up, unread and unanswered since March 08:
Under Delphi Forum’s Hepatitis C Forum of Hope topic: “Harvoni Anyone?”
“Believe it or not I am still waiting …….. a lot has happened since my original post . My husband had a brain bleed , then a blood clot , now it’s unemployment . I haven’t exactly been rushing either , too many ghosts from failed treatment pasts . Interferon , peg/riba, etc ; 5 times I have tried treatment and been hospitalized because of the meds”.To me it looks as if the above referenced forum has been orphaned – abandoned, along with the people who belong to it. Tragic.
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9 
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂Price wrote:Greed, Forum of Hope is owned by Bettie Blue.
fitz….all right, all right, I’ll talk to Betty but if the trolls kidnap me you’ll have to come get me.
P.
No problem.
ETA: We’ll have to fight our way out through the cobwebs!
”James-Freeman-facebook” wrote:I think a worthy goal would be to consider how people end up on her BB and look to deflect that traffic upstream of arrival.
You can’t. They get there via google. Also, forums at Delphi get their place on the list according to how many posts and views they have…and those numbers can be “creatively enhanced”. Look at how many views what I just posted have. So the top forums get more visibility. More tolerance from TOS, more “sponsors”.
Hep Central is owned by the guy that owns Wellness products. He sells super duper milk thistle and lets Joy do whatever she wants with the forum. Lavender is her favorite color. You also have to understand that when people arrive at a forum, it becomes their home. When I got banned by Joy, I had a group of people on treatment that I was guiding. They all followed me to a new forum and stayed with me until they were done with treatment, but they kept going back to Hep Central to visit.
It’s how I became infamous, by standing up to Joy
P.
- You must be logged in to reply to this topic.