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    • asdfz
      Hi, here seeking advice from those on Famvir for daily suppressive therapy. I’ve tried valtrex and get nasty side effects so I’m on Famvir. I was taking 375 every 12 hours which kept OBs away but I was getting 2 migraines a week. My doc said to try 250 every 8 hours. I’ve been on that about a week and constantly feel tingles. Is that normal when adjusting meds? Will it go away as my body adapts? Please help! 
    • Cas9
      @Ohsotired It took 10 years for mouse studies? Not sure if that's true, but anyway, it takes a while when starting out because you're kind of starting from scratch. That also involves in vitro work. Then you need to go to mice. So the in vitro and mice work is where a lot of the figuring out has taken place. It involved a lot of painstaking work. In fact Dr. Jerome started with an old style editor (CRISPR hadn't been invented yet). When he wasn't getting the results with whatever editor he was using, and CRISPR was invented, he then switched to CRISPR. He got worse results with that. His team then figured out what the issues were, step by step. And finally we are where we are; i.e. 90% and 50% cleavage in SCG and TG. And he knows what the issue is regarding improving those percentages to 90%+ in the DRG and TG. So a lot of the figuring out took a while and now we just need to see that it works in guinea pigs and then primates. Unless something goes wrong, and there's no reason to believe that it will, we are not going to take 10 years for each animal of course. If things go smoothly I would say 3 or 4 years. Then on to clinical. But we'll see. " Most researchers spend 3-6 years in the preclinical stage of research, 3-7 years in the clinical phase, and 2-5 years afterwards to launch the drug for public use. That’s Titans about 18 years in all for a drug to make it to mainstream. " So you chose the high end for each range. If I choose the low end for each it's 8 years. It's really impossible to predict. But I think the majority of us think that if it's successful it's at least 10 years away. Before your research, how long did you think the process would take? If it takes 10 years, how old will you be?
    • hk81
      The funding from NIH for the lab tests on mice will end in 2023, so this can give an idea on the timeline. https://grantome.com/grant/NIH/R01-AI132599-01A1 When the tests are moved to bigger animals (guinea pig and monkey), the possibility of experimentation is lower due to higher costs. The tests on monkeys are done only when the research has reached some solid results and only a few combinations are tested (see for example the tests done by ExcisionBio on monkeys for their CRISPR therapy for HIV). So I don't expect that (if everything works as expected) there will be bigger delays at that point. Usually when the funding from NIH ends, the research should have managed to run extensive tests on animals to gather further funding (often private) to move toward clinical trials. This period is called "the valley of death"; if there is not enough evidence that the therapy is effective, it will be more difficult to gather the attention of private investors and the research will run on lower funds and it will slow down or it will be stopped. Also: since it is a therapeutic application, the clinical trials might be faster than a prophylactic vaccine, unless side effects arise. There is no need to check that the therapy is protective on the long time, waiting for the participants to expose themselves to a pathogen (I also would not expect that they will check the condition of a participant for too long, because he might have exposed himself to another strain of herpes or the same one, if immunity will decrease after the therapy).  Hopefully once the first successful clinical trial, they will be able to get a fast-track and early-access as it happened with pritelivir.
    • asdfz
      Any CRISPR updates for HSV?
    • Ohsotired
      I don’t know why, but I decided to research the drug/medicine implementation process this morning. In my quest of knowledge, I found some disheartening information. Most researchers spend 3-6 years in the preclinical stage of research, 3-7 years in the clinical phase, and 2-5 years afterwards to launch the drug for public use. That’s Titans about 18 years in all for a drug to make it to mainstream.  Dr. Jerome has been working for nearly 10 years & has not finished the preliminary preclinical data. He’s only completed work with mice: no guinea pigs or monkeys. The reality set in that there’s so much more time needed. Hopefully, he doesn’t take nearly 10 more years to complete the next studies.    Afterwards, he’ll need to conduct a Phase I trial on humans, followed by a Phase IIa trial, proof of concept trial, Phase IIb trial,   Phase III trial, & regulatory review.  I was cautiously optimistic, but I’m starting to become cynical. This could take upwards to 20 years.   
MikeHerp

Donations to Fred Hutch Center

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Miss Horne

MikeHerp I applaud you, this is well written and I think you should send it as it is. I hope it makes a difference. Thank you for your efforts. 

I’m going to deactivate my account today for a couple of months at least. I haven’t contributed much to the forum but I find there’s too much negativity here from some people, other people question if I have herpes, someone tried to sell me some herbs, someone even tried to chat me up, all of which I think is unpleasant and unnecessary. 

I’ve enjoyed reading your posts, they are always informative, helpful and give me a little bit of hope when I’m facing my darkest days. I’ll keep an eye out on your blog from time to time, who knows we might hear some good news in the future.

Wishing you all the best until next time.

Miss Horne :heart: 

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MikeHerp

Ohh, i'm sorry to hear that Miss Horne.  You seem like a lovely person.

I'll miss your pleasant and positive attitude here, and your contributions to the discussions. 

It's important that we all support each other so it's too bad that we are losing you.

Feel free to contact me here in the future.  

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Tone123
4 hours ago, Miss Horne said:

MikeHerp I applaud you, this is well written and I think you should send it as it is. I hope it makes a difference. Thank you for your efforts. 

I’m going to deactivate my account today for a couple of months at least. I haven’t contributed much to the forum but I find there’s too much negativity here from some people, other people question if I have herpes, someone tried to sell me some herbs, someone even tried to chat me up, all of which I think is unpleasant and unnecessary. 

I’ve enjoyed reading your posts, they are always informative, helpful and give me a little bit of hope when I’m facing my darkest days. I’ll keep an eye out on your blog from time to time, who knows we might hear some good news in the future.

Wishing you all the best until next time.

Miss Horne :heart: 

Thank you Mike and hopefully you get some positive feedback. Miss Horne it's too bad you're gonna leave us but I understand and agree with you reasonings.  I too will take a break as it seems like you can't get positive feedback or even questions answered from the experienced folks. I'm just gonna wait to see if I get a positive on the nect test in a few wks and go from there. 

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Lulupazoola

Miss Horne, so sorry to see u go. I know exactly how u feel!  I am dealing with it by not ever reading posts by certain people.  As soon as i see their name, i move on.  Still, it is a very poor representation of this forum to have it so dominated by such negative individuals.  It is not the environment people with this condition need for it to be, especially lately.  Its really out of control.

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Lulupazoola

Mikeherp--wonderful letter!  My only editing suggestion would be to add "as well as disability" dysfunction or similar word after "both psychologically and physically".  Many of us give up activities we previously enjoyed due to feeling ill or fear of triggering OB's (i.e. excercise and recreational activities that r somewhat physically demanding. I dont know how many people have their work affected by this disease, but i imagine many.)  I will donate if they adopt your suggestion and create a drop down button for HSV.  

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MikeHerp

Hey guys, I got a reply!  My gift WILL be earmarked for HSV research.  If you donate there, you can also send them an e-mail and ask your donation to go to HSV.  Because of this, I will likely donate again in the future.

They are also reviewing the donation target options on their website and, while they don't know yet if HSV will be included, maybe if more people donate and send a similar message as I sent, that might persuade them to add HSV as a specific donation target in their drop down menu.  I think that would be great.  Keep in mind that until Dec 31, your gift may also be matched.

It's completely up to you if you would like to donate.  I'm not personally soliciting that you donate, but for me, I thought it would make sense to donate somewhere and be a part of the research that is going on.  I really think Keith Jerome and the Jerome Lab are doing some great work.  Remember, they were the first to prove disruption of a portion of latent HSV in an animal in vivo, and according to the recent reports, it seems they've been making their editing experiments more efficient.  

I'd love HSV to be cured or to have better treatment options, and I'm confident there will be in the future, maybe faster than we even expect.  Once there are better treatments or a cure, I want to be able to say that I added something, did my part, even if it was modest.

Reply I got is below: 

___________________________

 

Hi [XXXXX],

Thank you so very much for your gift to Fred Hutch. I can absolutely direct your gift to HSV research.

I completely understand your suggestion to add HSV research to our funding option drop down menu on our website. In fact, the options listed on our website are currently under review. I do not know yet if HSV will be including pending this review, but I will keep you up-to-date on this matter as we move forward. Please note that you may always make a gift over the phone with me or by check via mail and have it directed to HSV research.

We will change your $100 gift from HIV/AIDs to HSV research this afternoon.

If you have any additional questions or concerns, please feel free to reach out to me. Your phone calls and emails are always welcome.

Sincerely,

Andrea

Andrea MacPherson Larson
Annual Giving Manager
Philanthropy
206.667.5242 Office

206.795.0890 Mobile
amlarson@fredhutch.org 


http://www.fredhutch.org/content/dam/public/email-signatures/2/fred_hutch_logo.png
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N., Mail Stop J5-200
Seattle, WA 98109

fredhutch.org

 

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Roja
12 minutes ago, MikeHerp said:

Hey guys, I got a reply!  My gift WILL be earmarked for HSV research.  If you donate there, you can also send them an e-mail and ask your donation to go to HSV.  Because of this, I will likely donate again in the future.

They are also reviewing the donation target options on their website and, while they don't know yet if HSV will be included, maybe if more people donate and send a similar message as I sent, that might persuade them to add HSV as a specific donation target in their drop down menu.  I think that would be great.  Keep in mind that until Dec 31, your gift may also be matched.

It's completely up to you if you would like to donate.  I'm not personally soliciting that you donate, but for me, I thought it would make sense to donate somewhere and be a part of the research that is going on.  I really think Keith Jerome and the Jerome Lab are doing some great work.  Remember, they were the first to prove disruption of a portion of latent HSV in an animal in vivo, and according to the recent reports, it seems they've been making their editing experiments more efficient.  

I'd love HSV to be cured or to have better treatment options, and I'm confident there will be in the future, maybe faster than we even expect.  Once there are better treatments or a cure, I want to be able to say that I added something, did my part, even if it was modest.

Reply I got is below: 

___________________________

 

Hi [XXXXX],

Thank you so very much for your gift to Fred Hutch. I can absolutely direct your gift to HSV research.

I completely understand your suggestion to add HSV research to our funding option drop down menu on our website. In fact, the options listed on our website are currently under review. I do not know yet if HSV will be including pending this review, but I will keep you up-to-date on this matter as we move forward. Please note that you may always make a gift over the phone with me or by check via mail and have it directed to HSV research.

We will change your $100 gift from HIV/AIDs to HSV research this afternoon.

If you have any additional questions or concerns, please feel free to reach out to me. Your phone calls and emails are always welcome.

Sincerely,

Andrea

Andrea MacPherson Larson
Annual Giving Manager
Philanthropy
206.667.5242 Office

206.795.0890 Mobile
amlarson@fredhutch.org 


http://www.fredhutch.org/content/dam/public/email-signatures/2/fred_hutch_logo.png
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N., Mail Stop J5-200
Seattle, WA 98109

fredhutch.org

 

That is so cool!! :-)

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emz

Amazing job @MikeHerp! Thanks so much for this- is there anyway this can be pinned to the main board on the homepage?  I feel like there are many of us that would probably consider donating if given half the chance.. I think it's a little drop of positivity if we are directly contributing to research that could bring a brighter future in treatments and potential cures. :)

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purp7e

Great news MikeHerp, awesome!

I will for sure donate, I will start with 60USD and continue to do so as soon as they earmark it as HSV.

If this will be earmarked HSV research we should also post and promote this donation at our local herpes websites for the country each of us represent. 

Can you please keep us updated @MikeHerp if they come back to you? 

 

Btw, did you select HIV/AIDS and then sent Andrea an email telling her to earmark it as HSV

Edited by purp7e

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MikeHerp
3 hours ago, purp7e said:

Great news MikeHerp, awesome!

I will for sure donate, I will start with 60USD and continue to do so as soon as they earmark it as HSV.

If this will be earmarked HSV research we should also post and promote this donation at our local herpes websites for the country each of us represent. 

Can you please keep us updated @MikeHerp if they come back to you? 

 

Btw, did you select HIV/AIDS and then sent Andrea an email telling her to earmark it as HSV

 

That's exactly what I did.

I selected HIV/AIDS and donated and then sent Andrea an email asking her to earmark it for HSV

And she replied and said she will definitely have it earmarked for HSV.  You can see her reply above. 

I'm certain if you do the same, she will also direct it to towards HSV.  And if you do, pls also politely ask that they add HSV to their donation target menu.  They are currently reviewing that.  

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LetsDoSomething

Mike, in a sea of Negativity and lost hope you have wonderfully articulated the plight of those with HSV. The better and more organized HSV sufferers can be, the better chance we have at being heard. I applaud your efforts. Thanks for being a knowledgeable and active voice in this community.

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MikeHerp

Guys!  I'm pleased to report the good news--somebody even beat to me to it above.

I got the below reply reply from Fred Hutch.  This means that you guys have been coming through with the donations and the request (emphasis added in bold bnelow).  Thanks for backing me up.

WE DID IT!  I'm really proud of this community, even while I hate being a part of it.  haha.

 My initial, $100 was modest, partly because I felt it was going to HIV/AIDS, not directly to HSV (granted HIV deserves funds too).

Now I kn ow that the funds will be earmarked directly, I intend to up the ante now and be a regular donor and continue to follow up.

 

 

___________________________________________________

Hi XXXX,

 

Thank you for your email. I am glad that we were able to correct your gift to HSV research. In fact, I have received many additional requests by your community who want to support Dr. Jerome’s work, so I was able to create a special fundraising page for your cause.

 

http://engage.fredhutch.org/goto/hsvresearch

 

Donations made to this page will go directly to Dr. Keith Jerome’s lab. You are welcome to share this page with others who may be interested in donating to HSV research as well.

 

I am going to be out of the office starting tomorrow, returning on January 14. If you are in need of any support with the page between now and then, please email my colleagues at fundraise@fredhutch.org.

 

Thanks,

Andrea

 

Andrea MacPherson Larson
Annual Giving Manager
Philanthropy
206.667.5242 Office

206.795.0890 Mobile
amlarson@fredhutch.org


http://www.fredhutch.org/content/dam/public/email-signatures/2/fred_hutch_logo.png
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N., Mail Stop J5-200
Seattle, WA 98109

fredhutch.org

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MikeHerp

I just checked the webpage they made.  It says they've raised $600 already! 

Keep it rolling guys!!

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MikeIke

I've never heard of these people. Anyone have more info on who they are and their credibility 

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Cas9
13 minutes ago, MikeIke said:

I've never heard of these people. Anyone have more info on who they are and their credibility 

That's what the internet is for Mike. Yes, they are very credible. Google Keith Jerome

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MikeHerp
1 hour ago, JeffH said:

I donated $1000.

time to put your money where your mouth is, everyone.

BUMP!!!!

I'm going to do the same soon.  Next week, i'm going for $1000 too!!  I'll post when I do it.

You the man JeffH.  As you saiod, exactly.  Time to put your money where your mouth is!!

Edited by MikeHerp

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MikeHerp
1 hour ago, Cas9 said:

I just donated $100. The total is now $1700

high5!!  BUMP!

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