I'm posting this here as well as in the Doc's link above.. For heaven's sake, if she opens up the forum to new members again, don't go rushing over ther causing trouble. Just beware of this hepcaustralia.com.au aka AHCS forum, good people. There's something not right going on there.
Hi, I'm Chester. I just thought I should clarify something about the above link to
www.hepcaustralia.com.au. When I say clarify, I use that term extremely loosely.
As far as I can tell, hepcaustralia.com.au, aka AHCS, is unrelated to Hepatitis Australia. AHCS appears to be run by someone who identifies themselves only as cp@gc. Fortunately, she is very secretive about her real identity so I don't have to worry about defaming her.
I ran foul of cp a while back. Someone else who is now a member of the fixhepc forum started a thread on the AHCS forum asking if anyone was on generics. They actually just wanted to compare notes. Other forum members started asking questions. I joined the thread and told them about my personal experience on generics.
It was all very civilised. Then cp turned up and said to another member that they shouldn't have anything to do with generics unless they had met someone taking them in person. I called her out on this firstly, because I thought it was just a stupid thing to say. How does meeting someone on generics tell you anything about the safety and efficacy of the drugs. Indeed, how by meeting someone do you know they are taking generics or even if they have hep c!
Secondly, it was clear to me that cp's comment was a backhanded and cowardly way of calling my own and the other generic user who started the thread's credibility into question. And in fact, she then went on to suggest one or both of us were possibly spammers and to accuse me of promoting a single cause despite the fact the thread was called "Indian Sofosbuvir" and other members of the forum were urging myself and the other poster to share information about generics.
She also claimed at this point that the forum was privately run and funded entirely by her. Up to this point I too had thought the forum was related to Hepatitis Australia, a mistake the good doctor in the email you quote also appears to have made given s/he refers to the AHCS forum as an "official" HCV support network. And an easy mistake to make, the names are so similar.
Despite cp's readiness to call other people's credibility into question, there is no way to verify her own. Nowhere does she identify herself by her real name. What's more, there is not even any way to contact her via email even though the site's FAQs state:
Why can’t I login?
There are several reasons why this could occur. First, ensure your username and password are correct. If they are, contact the board owner to make sure you haven’t been banned.
I know this because a later post by me was deleted as was my account. All without any notification from cp at all. Very poor forum etiquette to say the least.
I had left the thread after taking a parting shot at cp by accusing her of being big on love and support but short on supporting people to get cured and comparing her to Belle Gibson. But I looked back in a few weeks later only to discover to my horror that people in that same thread were claiming, among other things, that:
- APIs were not the real thing and that generic users had to make their own drugs from them. I presume this referred to people encapsulating their own meds but anyone reading it could easily take it to mean that people were cooking up their meds on the stove like home bake heroin.
- That the excipients/fillers were an essential part of the medication.
- That Doc James was making $1000 per patient profit on the drugs.
- That Greg Jeffreys was doing what he's doing purely for his own self aggrandisement.
So I jumped in to correct these fallacies and that's when she deleted my post and account without notice. I have since been told she claims to have had to close the forum to new members because of fixhepc. Whatever that means.
I've come to the conclusion that AHCS is actually a privately run forum. I think there is something quite sinister going on there. In the short time I posted there, I kept getting an uneasy feeling that cp liked to keep people feeling sick and helpless because it gives her control over them. It has occurred to me that all medical forums are potentially honey pots for people who suffer from factitious disorders and Munchausen by proxy type syndromes. I think this may be the sort of thing that is going on at AHCS. It is not the only time I have witnessed it. There is another blog I have read which I won't name because the author appears to use their real name. They claim to be a hep c sufferer who has failed treatment 5 times including Harvoni. But upon close reading of their blog their story simply does not add up. There is something amiss. Nevertheless, they have continued to convince some other well respected hep c bloggers with their story.
In short, charlatans come in all shapes and sizes in the hep c world.