Stay away from neuro talk to discuss this!!

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby marcstck » Mon Jul 07, 2008 9:29 pm

Chris, I never sent you any e-mails, and accusing me of such is really beyond the pale. Anything I've had to say you I said on the open board, and if you read over the posts at neuro talk you'll see that I was actually being supportive of you, and only asked you to clarify some issues on which I had questions.

Your lack of civility is really very disheartening, and if this is any indication of your level of sensitivity to any kind of criticism, you're probably not the right person to be evangelizing Revimmune. I'm sure the good folks at Johns Hopkins would be horrified by the tenor of some of your recent posts..

Best of luck moving forward, I hope that you have indeed found your cure. Believe me, no one wants a cure found more than me, and if it's Revimmune, then let the party begin. Best of health to you, and have a wonderful, fruitful life...
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You people are too sensitive.

Postby merlin26 » Tue Jul 08, 2008 12:16 am

Tim's father is on the board of Opexa and has something to gain from people adopting Tovaxin. Chris is a spokesman for Revimmune and JH and has at one point said he could be getting paid for spreading the word of this treatment and he has something to gain. The truth of the matter is usually everyone has something to gain from something. You people are just way too sensitive and get under eachothers skin too easily. I look for objective opinions and refuse to believe in any kind of treatment until I see solid evidence. Ive been on Tovaxin the real stuff now for a year and though it seems to have stopped the progression of the disease it has not healed my lesions nor has it helped me recover any lost functionality. Revimmune has a lot of risks to it and has not been tested in a double blinded placebo controlled study. However preliminary data like Tovaxin suggests it to be very effective. I recently met a gentleman with MS who was going down hill 20 years ago and then opted to try TBI (Total Body Irridation). His MS went away completely for 15 years and then came back. Tovaxin seems to have worked for Tim and he was able to drop 2 EDSS points but it took 2 years according to him. The point is everyones MS is different and some may respond to certain treatments while others do not. Im sure there are people like me in the Tovaxin study that havent seen any relief to their current symptoms and im sure there are people in revimmune that have had similar issues with that drug. Chris has stated in previous posts that he believes that revimmune should be tried as a last resort and that if there are things that are working for you currently and youre not that bad off than you should continue with what you're doing. Everyone here just needs to chill out. This site has gone way too much towards speculation, conjecture, and criticism of individuals. I wish it went back to just posting links to hard data / potential treatments we'd all be better off then.
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Postby av8rgirl » Tue Jul 08, 2008 7:40 am

marcstck wrote:Chris, I never sent you any e-mails, and accusing me of such is really beyond the pale. Anything I've had to say you I said on the open board, and if you read over the posts at neuro talk you'll see that I was actually being supportive of you, and only asked you to clarify some issues on which I had questions.

Your lack of civility is really very disheartening, and if this is any indication of your level of sensitivity to any kind of criticism, you're probably not the right person to be evangelizing Revimmune. I'm sure the good folks at Johns Hopkins would be horrified by the tenor of some of your recent posts..

Best of luck moving forward, I hope that you have indeed found your cure. Believe me, no one wants a cure found more than me, and if it's Revimmune, then let the party begin. Best of health to you, and have a wonderful, fruitful life...


Once again, Marc has stated exactly what Chris' problem is...his lack of civility toward other people who ask questions or dare to disagree with him...period.

I am sure the people at JH would be horrified if they knew what Chris was saying and how he was treating other people. It's not good PR what he's doing. Plain and simple. He putting words in their mouths and I bet they are not happy about that, not one bit.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby Jamie » Tue Jul 08, 2008 11:44 am

Chill everybody.
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Postby Jamie » Tue Jul 08, 2008 11:46 am

In Chris's defense though, you guys followed him here to make your point.

If he irritates you that much then just ignore him on the other forum.

Following him here to save your 'internet honour' makes everyone look pretty lame.
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Postby marcstck » Tue Jul 08, 2008 3:42 pm

For the record, I've been posting here for years, from well before the date indicated under my username. I had to rejoin on that date due to some server crash or something, but I'd been here for about two years before that date.

I certainly did not chase Chris here, but saw his post denigrating neuro talk during one of my usual visits here (he calls the site out in the title of this thread). I frequent four or five different MS websites, usually reading more than posting, and I'm actually more active here than at neuro talk. I've been interested in Revimmune since I first heard about it in March of 2007, and have posts in this sub-forum dating back to this past January...

I initially thought Chris's post over at neurotalk were a very good thing, as it's very important for people to learn about Revimmune, along with every other treatment option. Unfortunately, his posts soon devolved into vitriol, and things got out of hand. If he did receive hostile e-mails, I can understand his getting upset, but still, he shouldn't have insulted the entire population over there.

Believe me, life is too short to be chasing people around the Internet. The fact is that you see the same names over and over on all of the different websites, as most people belong to multiple sites. My primary aim in coming to these sites is to gather as much information as possible, to better battle this disease that is forcing me to watch myself wither away.

I believe anybody fighting this disease deserves some basic respect, and each will handle the struggle in his or her own way. Disparaging sick people for the way they choose to deal with their illness seems quite mean, and totally uncalled for. And I direct that sentiment to both Chris and whoever it was that belittled him at neuro talk or sent him any hostile e-mails...
Last edited by marcstck on Tue Jul 08, 2008 4:35 pm, edited 4 times in total.
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Postby Jamie » Tue Jul 08, 2008 3:47 pm

Of course, I agree with a lot of the sentiment.

I've just read some of the stuff on there and it is a bit over the top, no one sane is happy to have MS.

That's pretty insulting to people.

Anyway, I don't want to get sucked into a flame war so, I'll mind my own business after this!
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Postby av8rgirl » Thu Jul 10, 2008 7:54 pm

marcstck wrote:For the record, I've been posting here for years, from well before the date indicated under my username. I had to rejoin on that date due to some server crash or something, but I'd been here for about two years before that date.

I certainly did not chase Chris here, but saw his post denigrating neuro talk during one of my usual visits here (he calls the site out in the title of this thread). I frequent four or five different MS websites, usually reading more than posting, and I'm actually more active here than at neuro talk. I've been interested in Revimmune since I first heard about it in March of 2007, and have posts in this sub-forum dating back to this past January...

I initially thought Chris's post over at neurotalk were a very good thing, as it's very important for people to learn about Revimmune, along with every other treatment option. Unfortunately, his posts soon devolved into vitriol, and things got out of hand. If he did receive hostile e-mails, I can understand his getting upset, but still, he shouldn't have insulted the entire population over there.

Believe me, life is too short to be chasing people around the Internet. The fact is that you see the same names over and over on all of the different websites, as most people belong to multiple sites. My primary aim in coming to these sites is to gather as much information as possible, to better battle this disease that is forcing me to watch myself wither away.

I believe anybody fighting this disease deserves some basic respect, and each will handle the struggle in his or her own way. Disparaging sick people for the way they choose to deal with their illness seems quite mean, and totally uncalled for. And I direct that sentiment to both Chris and whoever it was that belittled him at neuro talk or sent him any hostile e-mails...



I have also been a member here...no one "chased" Chris anywhere. He joined NT and then came back here and bashed another forum...In my mind he is the one who belittled another forum. No one here did that except him.

I happen to wholeheartedly agree with Marc. And thank you once again Marc.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby L » Fri Aug 22, 2008 4:47 pm

Hey Chris

Back in July you wrote this -

chrishasms wrote:Cytoxin in a pulsed format shows a risk to cancers but in a HiCy format since the late 70's this has shown safe.


Which I find encouraging. Have you any more information and sources?

Thanks!

-edit-

I have half answered my own question!

http://cat.inist.fr/?aModele=afficheN&cpsidt=3534407

"Among patients who received a total amount of cyclophosphamide of less than 20 g, a nonsignificant 2.4-fold risk of bladder cancer was apparent. Significantly elevated sixfold (95% CI=1.3-29) and 14.5-fold (95% CI=2.3-94) risks of bladder malignancy followed cumulative doses of 20-49 g and 50 g or more, respectively (P value for trend=.004)."

At 50mg/kg for four days (for HiCy) that would be just 2.35 grams for me.
Now, I'm not sure if they are talking about oral or intravenous administration and I'm not sur either of the time scale of treatment that they are talking about but, whichever way, it seems that a HiCy treatment is safe.

Still, I'd welcome any more information.
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