Questions for Ron Davis

dylemmaz

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hi janet, do you have an idea of how long it could take whitney to titrate up to the targeted dose of this new medication? if i remember correctly you said it took 6 months with the abilify to reach 2mg and then 2 weeks from there until noticeable benefit was had. are you expecting a similar timeline?

thank you kindly,
dylan
 

Janet Dafoe

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hi janet, do you have an idea of how long it could take whitney to titrate up to the targeted dose of this new medication? if i remember correctly you said it took 6 months with the abilify to reach 2mg and then 2 weeks from there until noticeable benefit was had. are you expecting a similar timeline?

thank you kindly,
dylan
Whitney started Abilify sometime in the fall of 2019 and reached 2 mg on February 17, 2020 and then took him a couple of months to notice and effect. And no, we have no idea how long anything else would take
 

lenora

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Thank you Janet for all that you're doing and for the time and energy your entire family gives to our community. Back when Ron started collaborating with OMF, I had my first ray of hope that we would make progress. It may be slower than we wish, but there's much more of it than I expected.

Personally, I appreciate Ron's hesitation in giving us too many details. I don't know if I could resist trying things myself, and I definitely don't have the background or brain bandwidth to do it well. Certainly not in a way that is beneficial for the whole community.

Yours and Ron's commitment to sharing what you learn with us, to giving us regular updates, just to keep us hopeful and encouraged, is so appreciated. Thank you for being generous with your time for us strangers.

Indeed, @Cher Noreen.....I agree with every word you have said.

Yes, everyone wishes progress could be faster, but I don't believe that any two people alive could wish it more. You're doing a wonderful job, for us, Whitney and yourselves. Not all is criticism, trust me. Yours, Lenora.
 
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QUESTION RE: NIH GRANTs, denied applications for the nannoneedle work

1) Did the peer reviewers provide comments that can be feasibly addressed?

2) Will the team resubmit revised grants in a next round, if so, potentially when?

edit: 3) there is an Appeal process for denied grants, I read. Is that route worth pursuing?
 
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jaybee00

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Thanks @Janet Dafoe

Will the new treatment have to undergo a randomized controlled trial before it can be released? If it works I’d urge you to simply announce what it is and let those who want to take it, take it. Those who want to wait for a trial are free to wait. Also please let us know if Ron wants any volunteers to try the treatment at Stanford. Thank you.

The new treatment possibilities involve doing a deep dive into metabolic pathways. Ron is just really not wanting to talk about it yet because he doesn’t want patients experimenting on themselves with possible harm. They are making progress with this.
 

mitoMAN

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@Janet Dafoe has Ron looked deeper into why Ativan / Lorazepam and Clonazepam helps ME/CFS Patients?
(It both partly binds at the TSPO receptor (peripheral benzodiazepine receptor (PBR)) which is unique to Lorazepam (Ativan), Clonazepam and Diazepam)
-> I know he did the Seehorse Instrument on Ativan and T-Cells.




Have you looked into testing pure TSPO ligands? FGIN-1-27 for example has shown to modulate T-Cells and ameliorates Autoimmunity.


Anxiolytic Drug FGIN-1-27 Ameliorates Autoimmunity by Metabolic Reprogramming of Pathogenic Th17 Cells
https://pubmed.ncbi.nlm.nih.gov/32111885/
 
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dylemmaz

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hi @Janet Dafoe 😁

i wanted to ask two questions. i am sorry if i am a bother, you can tell me off and i promise i will not be offended 😋

i am wondering if you could shed some light on ron’s collaboration with akiko iwasaki and what this may mean for us? i saw you mention that you would connect prof iwasaki with patients? is this for research? maybe i could be one of the patients? 🤪

also, my friend who has cfs but is not able to make an account on phoenix wanted me to ask this question on her behalf. she said on facebook you had recently said access to ron’s newest treatment would be weeks to month away. she wants to know if this is still the timeline? i feel bad for relaying this question as i myself have asked about the timeline plenty enough already. but i also feel obligated as i told my friend i would pass the question on to you. i hope that’s okay!

again, thank you so much and have a splendid evening 😁
dylan
 
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hi @Janet Dafoe 😁

i wanted to ask two questions. i am sorry if i am a bother, you can tell me off and i promise i will not be offended 😋

i am wondering if you could shed some light on ron’s collaboration with akiko iwasaki and what this may mean for us? i saw you mention that you would connect prof iwasaki with patients? is this for research? maybe i could be one of the patients? 🤪

also, my friend who has cfs but is not able to make an account on phoenix wanted me to ask this question on her behalf. she said on facebook you had recently said access to ron’s newest treatment would be weeks away. she wants to know if this is still the timeline? i feel bad for relaying this question as i myself have asked about the timeline plenty enough already. but i also feel obligated as i told my friend i would pass the question on to you. i hope that’s okay!

again, thank you so much and have a splendid evening 😁
dylan
@dylemmaz I’m hoping the next discussion between Drs Davis and Iwasaki will be filmed! 😊 It’s exciting news that they’re working together and interesting!
 

Jyoti

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Friendly moderator reminder: in order to ensure that the questions and answers @Janet Dafoe has graciously offered to transmit to and from Ron Davis are easy to access and read, we ask that all of us work hard to keep this thread on topic. It will be moderately tightly to assure that it stays focused.
 
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