What happened to Travelmom's VX950 thread????

Travelmom started a thread late last week titled something like "Update on my VX trial experience". It appears to have been deleted. Anyone know what happened and why??

Seemed an entirely normal thread from what I remember.

[cuteus]

have you notice the button that says 'browse archives' in the home page?  guess what is for.  threads are not deleted unless they have serious violations in them.

[cuteus]

well I'll be darned!  it was eliminated completely! not even in archives!  why?  ok, now i second your why!

[sfbaygirl]

LOL That is strange...I remember reading most of it. Nothing inappropriate that I rememeber. It was a good thread about those on VX950. Too bad.

[Tater-ToT]

It can't be resurrected from a cached copy either.. I tried!
It's Gone Gone!

[chcnme]

It was indeed there because I've been particularly interested in VX-950 and remember that thread.  I looked down the list and in archives just now and can't find it, either.  Why in the world would it have been removed - or by who?  It had some good info in it and something I would have probably liked to have re-read again, for sure.  The only thing I can remember about it now was the part about nonresponders in PROVE2 being offered enrollment in PROVE3.  Can it be put back?  Will anyone know ever know why it was removed?  That's just weird.

[sfbaygirl]

Maybe because it was mentioning enrollment in trials? It only takes one post to get a thread pulled...I didnt' read the whole thing.

[chcnme]

Hey sfbaygirl. :)  It's strange because it was a good thread; I mean ...there was nothing objectionable in it  (well I guess that might depend on who thinks what is objectionable LOL).  Are we not supposed to talk about trials in general?

[sfbaygirl]

I remember it was a good thread. I know people have talked about trials before, so I don't know. If someone thought something was rude or derogetory they could have complained and had it pulled. Or if someone was trying to sell something they will pull it.

[NYgirl]

Maybe it was removed because they are supposed to be blind trials and sharing too much info got it removed or something?

[lab-rat]

nygirl may be right...I remember many weeks ago when pds posted her off-site PCR results.  That post mysteriously disappeared also. It makes me paranoid about posting my experiences with the study. (So far I'm still blinded and have no useful information to share).

[GrandOak]

Maybe Vertex made a generous contribution in order to keep any information on VX950 suppressed.

[APKhaos]

The conspiracy theories are unlikely to be the reason.

There have been many informative threads posted by Prove 1 subjects discussing experiences, CBC results, sx, etc. None of those were deleted, and there was no sensitive information posted AFAIK. In this double blinded trial, the subjects truly don't know much beyond their regular blood panels and personal sx.

As a trial subject, I'd really like to know if there is some prohibition on discussing the trial. Otherwise, I think we'd all like to know why this particular thread was vaporized.

[cuteus]

seriously, If someone emails

[APKhaos]

Can't imagine that a trial subject would be stupid enough to deliberately break any non-disclosure agreemeent required as part of participation in the trial. Your suggestion is almost insulting.

Rest assured I have read the Consent very carefully, and complied in all respects. I'm sure that goes for the other trial subjects here, too.

[cuteus]

not sure why my statement was taken so personally, but, cest la vie.

as for
"I'm sure that goes for the other trial subjects here, too."
how can anyone make such a definite assertion about another person?

we are all speculating as to the reason why the thread was eliminated, that is all.

and there have been various threads with quite a lot of details and personal references in MH, but again, it is all speculation and we could email CIndy and ask her why.  That way we don't have to guess anymore and no one has to feel insulted.

[APKhaos]

Not personal, just surprised that anyone would think that all ten or so people here who are in the trial would do anything that is prohibited by the trial rules. I know I want to stay in the trial, and I'm guessing the others do too.

Last night was shot night, so a crazed reaction is entirely possible :-)

The Missing Thread Mystery is still to be solved.

[cuteus]

most trials do have a secrecy clause, much like a trade secret protection.  do you guys have any copies of the papers signed?
I am surprised as to all that has been shared on a trial that is still hushed to the public.  I think it must be to protect the trials somehow.

[APKhaos]

Email sent. It will be good to know what happened so we can avoid it in future. Will post if I hear back from Cindy.

[mremeet]

Sometimes posts are removed because Cindy receives a specific request from a member to delete it (for whatever reason). There might have been an inappropriate post added towards the end (that few people saw) which also might have prompted a deletion.

[mikesimon]

Maybe Jodi/Travelmom asked that it be removed. Mike

[APKhaos]

You're right Mike. It could just be that simple.

[APKhaos]

Cindy confirmed that the original poster asked for the thread to be taken down. All is good, although I hope Jodi was OK with what we all posted on that thread.

Hey Jodi, hope you are doing well. I should know something next week, but feeling OK so far. Been a good week this week.

[cuteus]

good job, sherlock!

things in the forum get a bit paranoid sometimes, and the simplest reason is overlooked.

[nick m]

The deleted post/thread brought me here 'cause its title came up on google when i banged in 'vertex trial'. So, thanks, whoever, you did me a big favour. I'm in the screening bit ( horrendous biopsy last week - see my blog 'nickaround'). whether its my liver, age or just plain extreme intolerance, i can't bear any form of negative speculation - it always feels like victim stuff so i was mightily impressed that someone e mailed, someone asked, and the mystery was resolved. After years of avidly devouring conspiracy theories in the world of hippiedom and 'active addiction' (oxymoron) while living the life of a spectator its been a revolutionary experience and far more exciting to look at the evidence soberly and realise that lee harvey oswald killed JFK alone, Marilyn o'd'ed on barbs, Hanratty was guilty (dna evidence), and flying saucers do not exist. This is the exact opposite of how i thought before. Forgive the dogmatic sureness, even as i'm writing this i suspect its more about my underlying fear and anxiety re the next few months (how will i cope, i'm not robust enough, how will i work, will my family survive me, please let me get the vertex, its not fair etc) I've already gained a great deal fo ID, good clear information and perspective from trolling through these mails so thanks
nick m

[HCV-B-GONE]

There's new information on Phase1b results, the VX950 cocktail appears to be 88% effective (Thank God) and one person who was commenting on their being a non-responder would benefit from the newest information - which is on the Vertex website.  I've been reading the comments on this website for a long time and I've been in/out of a trial since 2001.  The secret is to STAY healthy by eating lots of healthy low fat food and lately I've been drinking lots of water which really makes a difference.  After being on the Interferon and Ribaviran for 6 months in 2001, I can tell you that the after treatment recovery is about 1 year.