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Star33hcs

Dr Jerome

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MikeHerp
45 minutes ago, Star33hcs said:

Mike do you think that is a real cure for herpes ?

Yes that would definitely be a cure, or at least a functional cure

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dont quit!17

Im pretty happy their business is considered an essential service. With everything going on right now, it is a blessing that their research has continued. Prior to this townhall Q&A, I wouldn't have been surprised if all other research had been suspended indefinitely. So in that aspect, we sort of lucked out, for once. 

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Star33hcs
3 hours ago, MikeHerp said:

Yes that would definitely be a cure, or at least a functional cure

I hope you ll be right 

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MikeHerp

Got this message this morning from Andrea, FHC's senior philanthropy manager who helped set up the HSV cure fund raiser (just FYI). 

 

 

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Garen

Great update to hear Mike! 67k is a real amount of money to raise in a relatively short timeline

Looking forward to their next substantial update! Everyone please remember to share their November 2019 video to other affected. Getting them to know about Fred Hutch is more than half the battle

(LINK) https://www.youtube.com/watch?v=Tk5EO6RerCk

 

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Star33hcs
3 hours ago, MikeHerp said:

Got this message this morning from Andrea, FHC's senior philanthropy manager who helped set up the HSV cure fund raiser (just FYI). 

 

 

Mike do you can ask about the pig studies ?

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MikeHerp
12 minutes ago, Star33hcs said:

Mike do you can ask about the pig studies ?

Yes, they said they are ongoing.  

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Misterx

Hey Mike, 

Thank so much for your effort. Just made another 50 dollars donation few days ago. I am truly hopeful for this and the vaccines. Cant wait for more update from the research.

Thanks man.

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MikeHerp
Posted (edited)
7 hours ago, Misterx said:

Hey Mike, 

Thank so much for your effort. Just made another 50 dollars donation few days ago. I am truly hopeful for this and the vaccines. Cant wait for more update from the research.

Thanks man.

Thank you! My automatic monthly donation also went through a few days ago.

I'm also excited about the ongoing guinea pig tests. We just have to sit tight and be patient. I truly believe they are doing everything they can to move this forward. 

Edited by MikeHerp

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MikeHerp

I got this note from FHC's Engagement Coordinator (Joe Russo). and I replied as below.

Thank you guys for doing such a great job, promoting and supporting the fund raiser and supporting our effort aimed at an HSV cure.

I think our donations and you guys' active and enthusiastic participation in the FHC Townhalls to keep reminding FHC how important Dr. Jerome's HSV cure work is, is turning some heads at FHC.

 

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Misterx
2 hours ago, MikeHerp said:

I got this note from FHC's Engagement Coordinator (Joe Russo). and I replied as below.

Thank you guys for doing such a great job, promoting and supporting the fund raiser and supporting our effort aimed at an HSV cure.

I think our donations and you guys' active and enthusiastic participation in the FHC Townhalls to keep reminding FHC how important Dr. Jerome's HSV cure work is, is turning some heads at FHC.

 

Hey Mike, thanks for this. People like you who has so much inputs to this are always welcome to the forum unlike some mentally disabled people who is just busy denying others and have too much time of their own. We all need people like you in this forum Mike. Thanks again and we are all staying hopeful because of updates like this. 

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hk81

@LightafterDarkness thanks! Only a large group of people that work synergistically can manage to get the attention that it needs.
Fighting the stigma by discrediting people or silencing / ridiculing the ones that suffer physically more than others will not bring us anywhere.

Anyone can reach out to any of us with ideas or even just his willingness to be more active in making his voice heard.

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Ohsotired
Posted (edited)

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. 

development-steps-in-medicines-v1_EN.png
 

HSV_vaccineRD_Sept2014.pdf?ua=1

Edited by Ohsotired
Error

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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.

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Cas9
Posted (edited)

@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 very possibly 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 currently 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?

Edited by Cas9

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Miss Horne

When I was diagnosed we were all gearing up for the Frazer, Gen003 and Halford therapeutic vaccines, all flopped. Pritlevir trials were suspended and there was nothing else really on the table.

Some 6 years later Pritlevir has been fast tracked, Gen003 might be back in the running and a member of our forum is taking part in a monoclonal trial (with good results I understand). Best of all Dr Jerome has actually partially cured hsv in mice and thanks to our donations will be progressing to other animal modules soon.

My point being time flies and there is so much more research going on now. I understand the frustration, we all do but please don’t get disheartened, like I say we are in a much better position now than we were just a couple of years ago. 

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Miss Horne
Posted (edited)

Just remember folks, a lot has changed in the last couple of years, we are not talking decades here just a couple of years.

My friends baby was born just a few months before I was diagnosed and he’s 6 years old now and it feels like yesterday. I know it’s hard but please remember that Dr Jerome and the team are doing all the can to find a cure and we are actually helping them speed things up.

The future is looking much brighter than it did 6 years ago and the other day I saw a video of Terri Warren saying she saw people before Aciclovir\Valtrex was even invented, back then they had nothing at all! Yes we desperately need new treatments but imagine not having anything! 
 

Hang in there guys, we can do this ❤️

Edited by Miss Horne

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Ohsotired
On 5/28/2020 at 9:17 AM, hk81 said:

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.

@hk81

Thanks for providing your take on the subject. 
 

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.

Great point!  Hopefully, he finds the right combinations and maintains a high level of efficacy in the rest of the animal trials. I also noted that Excision Bio is slated to start their CRISPR trial for HSV in 2022. 
 

Also: since it is a therapeutic application, the clinical trials might be faster than a prophylacticvaccine, 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). 
 

I would hope the process wouldn’t take too long after the trial is run; however, I read that it could because no one truly knows the long-term effects of such treatment. I assume trial participants would be observed to ensure that nothing detrimental happens as a result of scientific inquiry. Additionally, the FDA may want to know about effects of over-editing similarly to the understanding of effects of overdosing on a drug. 
 

Hopefully once the first successful clinical trial, they will be able to get a fast-track and early-access as it happened with pritelivir.

Is Pritelivir available? To my understanding, it is not. Doctors can request it for those who are immunocompromised. From what I was told in a consult with Terri Warren, Pritelivir would not be approved due to the noted negative impact it has on the eyes in patients. 
 

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hk81

@Ohsotired

true, they will need to show that there will be no side effects from the editing. I have seen in the poster from ExcisionBio that they also made considerations about the health of the monkeys, so it's definitely something that will be checked.

Pritelivir is available only for those cases that are considered a priority / emergency, for the reason that it's not approved for the market yet. That's what I was not including in the situation "if everything works as expected". But the safety of gene-editing seems more a matter of designing the editor so that it doesn't do wrong cuts in the dna; the outcome seems more predictable than a medicine that can alter the complex reactions in the human body and than a vaccine that deals with the poorly known immune system. It seems more like engineering than medicine.

Well, hopefully they won't discover that the gene editor can mutate too. Lol, I'm joking :D

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Ohsotired

@Cas9

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.
 

My point was not that it has taken 10 years in mouse studies; it was that the process has taken nearly 10 years from inception to mouse studies which does not included the other necessary animal studies before a concept can take place clinically.
 

I understand that Dr. Jerome’s work has taken a while because it started from scratch so to say, but I don’t think it will take off overnight. Like you said, we will see. I hope we aren’t still online in 2024/2025 saying, “It’ll only take 3-4 more years for animal studies!”

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.

Yes. I took the high end for each range. I would rather overestimate versus underestimate. Logically speaking, I think it’s better to anticipate bumps in the road and set your sights accordingly.

Before your research, how long did you think the process would take?

Honestly, 15 years. Unless you’re fortunate enough to participate in the trial (& receive treatment & not a placebo), the treatment may not be available publicly for years. It’s not like phase III would end & the therapy would be magically made available in doctor’s offices the next month. 

If it takes 10 years, how old will you be?

50. I just want relief because I’m a person who suffers immensely. I have a compromised immune system so I don’t think I’d be allowed to participate in a trial. At the same time, I want to believe, but we’ve seen options come & go just as quickly as they were perceived to be the “gamechanger.”  I pray you’re low figure is more accurate that my high figure

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Ohsotired

@Miss Horne

Just remover folks, a lot has changed in the last couple of years, we are not talking decades here just a couple of years.

Correct! A lot has changed: ideas have cropped up & are being researched. A lot has not: we still don’t have better treatment options for herpes. 

My friends baby was born just a few months before I was diagnosed and he’s 6 years old now and it feels like yesterday. I know it’s hard but please remember that Dr Jerome and the team are doing all the can to find a cure and we are actually helping them speed things up.

In 6 years, we are still no closer. We’ve moved from a thought to in vivo research. Wait! There’s a difference. We are moving to more in vivo research.  Hopefully, we’re not singing this song in 6 more. 

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Ohsotired
10 minutes ago, hk81 said:

@Ohsotired

true, they will need to show that there will be no side effects from the editing. I have seen in the poster from ExcisionBio that they also made considerations about the health of the monkeys, so it's definitely something that will be checked.

Pritelivir is available only for those cases that are considered a priority / emergency, for the reason that it's not approved for the market yet. That's what I was not including in the situation "if everything works as expected". But the safety of gene-editing seems more a matter of designing the editor so that it doesn't do wrong cuts in the dna; the outcome seems more predictable than a medicine that can alter the complex reactions in the human body and than a vaccine that deals with the poorly known immune system. It seems more like engineering than medicine.

Well, hopefully they won't discover that the gene editor can mutate too. Lol, I'm joking :D

@hk81

You made me chuckle. I hope not; I’d hate to come out worse than I went in. Could you imagine turning into Master Splinter as a result of gene editing? (I just told my age). LOL

Question: if someone suffered Bell’s Palsy as a result HSV, I wonder if the editing would reverse the neurological effects? Just a thought. If the neurons and nerves are no longer impacted, I wonder can they heal themselves? 

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hk81

I don't know. If the inflammation of the nerve is caused by reactivation..
Maybe you can search something about herpes zoster neuralgia and if antivirals have effect on it.

Did you see any effect of daily antivirals on our problem?

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Miss Horne
Posted (edited)
2 hours ago, Ohsotired said:

@Miss Horne

Just remover folks, a lot has changed in the last couple of years, we are not talking decades here just a couple of years.

Correct! A lot has changed: ideas have cropped up & are being researched. A lot has not: we still don’t have better treatment options for herpes. 

My friends baby was born just a few months before I was diagnosed and he’s 6 years old now and it feels like yesterday. I know it’s hard but please remember that Dr Jerome and the team are doing all the can to find a cure and we are actually helping them speed things up.

In 6 years, we are still no closer. We’ve moved from a thought to in vivo research. Wait! There’s a difference. We are moving to more in vivo research.  Hopefully, we’re not singing this song in 6 more. 

@Ohsotired

Ok, I’m not sure why you are so negative about my post? Perhaps you are frustrated that research isn’t progressing fast enough, perhaps you are suffering everyday? Well we all are.

That’s why myself and Mike Herp (mainly Mike) set up the Fred Hutch donations fund, so that this community could hopefully speed up research and it’s actually done that.

I’m not going to get drawn into a slinging match with you and I won’t be responding to any other comments you leave on this thread but please if you have any other suggestions on how to expedite the research or anything that can help us find a cure sooner then I’m all ears.

Please don’t take this personally but there’s way too much negativity on this forum, it’s not something we need and in the long run it doesn’t help anyone. 

Edited by Miss Horne

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