it seems ron davis may have a new potential treatment

[Janet Dafoe]

Hi Ladycreole03.....As tempting as it sounds (and it does), most people on abilify for longer than 3 mos. find that it no longer works for them. My concern is that it's probably better to keep the brain's chemicals as free of outside substances as possible, that way when a new treatment emerges folks will be able to use it immediately....and without a combo of other drugs. I wish you health. Yours, Lenora.

I do not believe it is true that “most people” lose their benefits from Abilify after three months. That was not true in the study. And there is no data to show that. We must be careful about relying on prominent anecdotal reports of things

 

[Janet Dafoe]

From what I understood -maybe I'm wrong - they tested the drug and he had a bad reaction. Bc he said they learned many things from his bad reaction. Maybe dose-dependent?

He did not have a bad reaction to the med. Maybe you guys could hear what Whitney wrote and stop speculating. It just ends up spreading wrong information.

 

[Martin aka paused||M.E.]

He did not have a bad reaction to the med. Maybe you guys could hear what Whitney wrote and stop speculating. It just ends up spreading wrong information.

You're right. I won't speculate anymore!

 

[bensmith]

I heard its only like 10 to 15 percent lose abilifys ability.

 

[Ladycreole03]

I don’t want to take this off topic, and I don’t have explicit permission to share their story, but Abilify took this individual from extremely severe to moderately ill over the course of about 2 to 4 weeks. It’s held for a few months now. I’ve been sick a long time and met a lot of patients, and I’ve never seen anything like this.

I know two other patients who were not able to tolerate it and discontinued a few weeks after starting.

Wow! Thx for sharing that!

 

[Riley]

Wow! Thx for sharing that!

You’re welcome! Reading my comment I see how it could be construed as another vague forum anecdote. I wish I could help document this person’s response more thoroughly like a case study, but I am too sick to do that currently.

I will say this person has not spent a single second on a patient forum and had almost zero prior knowledge of Abilify and took it on an offhand recommendation with very little information and no expectations.

To see how they are now after only knowing them as severely ill for years is as I said previously hard for me to process. It is exciting though even if it’s not necessarily the answer for everyone.

 

[GlassCannonLife]

It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner.

I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been complicated by how poorly I reacted to the test. Ron now wants to figure out a way to test patients that won’t make them worse for a month+ like it did to me.

There are also multiple other very interesting treatments Ron is working on.

And remember that when we talk about a cure, the way Ron is working on this so open mindedly and collecting so much information he could stumble across a cure. The chances of that happening have gone through the roof since he and others started working on ME/CFS compared to the previous 40 years.

So keep your hopes up. <3

This legitimately feels like waiting for Christmas to come as a child.. Never thought I'd have to deal with that feeling of anticipation again haha

 

[jaybee00]

she said on facebook you had recently said access to ron’s newest treatment would be weeks away.

I don’t think this is correct.

 

[Marylib]

same here seems like a snowball of good things happening recently!!!

LOL - you kids calm down...I feel the same way I do when I babysit my niece's kids. If you go to sleep, the sun will still be there in the morning. All I did was put something from twitter into this forum and it's like a stock market tip. Scientists tweet all the time. It's their version of a club. If you want to play the stock market, follow the stock price of Ampligen. Here's your new toy, and please accept it not as a bribe or a criticism. Parents, as well as stock-brokers, will understand the spirit in which it is intended.
https://www.marketwatch.com/investing/stock/aim

 

[Jyoti]

THREAD IS NOW REOPENED. ALL--PLEASE DO YOUR BEST TO STAY ON-TOPIC! THANKS SO MUCH.

 

[raghav]

GO @Whit GO ! You can do it !

 

[Badpack]

So much secrecy. Any news here ?

 

[bensmith]

@Badpack indeed : p

huh i thought the treatmeant failed. Did it end up working at all?

 

[perrier]

I am utterly desperate to hear if anything is forthcoming. Thanks all. Best wishes.

 

[junkcrap50]

@Badpack indeed : p

huh i thought the treatmeant failed. Did it end up working at all?

Pretty sure it failed and made Whitney worse. Whitney scolded everyone about speculating about it and to pretty much drop it as it was unsuccessful. Even if the treatment was something else than what Whitney experimented with and got worse with, it was Whitney’s wish we not speculate and try these treatment ourselves.

 

[perrier]

Whitney does not look like he is getting worse. I don't enjoy making personal comments, but his last posting shows him sitting cross legged and giving some pacing advice. He is not propped up, not leaning, and basically sitting very upright and holding his arms up a bit. He looks to have energy, though, yes, the years of suffering are etched on his face, as they are on everyone's.

However, leaving that aside, I do wish we could hear from Dr. Davis. I desperately need some good news. Thanks.

 

[Badpack]

@perrier

Pretty sure only Covid Long hauler research will get us out of this. There was a point in 2015 when i was so excited to hear everything about OMF and Rons research. 6 years and many mystery posts later im just disappointed and jaded by their progress. The nano needle went from break through invention to we need more time to make a fast paced nano needle to we cant do anything because covid delayed production in china to ohh we never even made them lol got you, baited. And thats nearly all what comes around. The stiff erythrocytes theory took them 5 years from its real to its wrong to its real again. Same progress was made for long covid in 6 months. So yeah, just keep going for a while longer. Long covid research will probably benefit us the most in the next 1-2 years.

Look out for Dr.Patterson and his work. After reading a lot of case studies i still think he is wrong with his treatment regime but he is producing new informations at a really rapid pace. Maraviroc has some real promising results. Plus the patent is gone next month. So the price for it should plummet.

 

[jaybee00]

Treatment didn’t work but looks like Ron picked up a signal because the test they did on Whitney before the treatment was confirmatory.

 

[Breagjam]

I thought the nanoneedle work had stopped because the funding was rejected by NIH.

 

[Rufous McKinney]

because the funding was rejected by NIH.

I believe that is what we were told, and for "idiotic" reasons (the grants were rejected).

dont know what those reasons were. The reasons in theory, would have been from peer reviewers, if I understand the process correctly.

so now what, I dunno.