it seems ron davis may have a new potential treatment

[RL_sparky]

I am extremely prudent and would prefer not to take anything without a couple decades of use behind it.

That's very understandable and sixteen years into this disease I'm becoming more like this myself after chasing
treatments for years.
I do understand the strong desire that those who choose to try treatments early. We all have our own experience's and risk tolerance.

 

[The Bard]

If this stuff appears to cure Whitney, the moment there is ONE doctor on the planet who is willing to try it on patients who are willing to sign a waiver accepting all risks is the moment when a lot of us will drop everything to see this doctor, regardless of the cost or travel needed.

This is how desperate some of us are.

I emphatically echo this sentiment. Though I’m not actively dying, I’m not approaching anything remotely resembling “living.” Moreover, my calculations estimate that my finances can weather another year of total disability, but nothing beyond that juncture.

I am cognizant that everyone’s circumstances and risk tolerance is unique, but given my exceedingly precarious spot, I too would trial anything that anecdotally bolstered a patient as severe as Whitney.

That’s how desperate I am.

 

[perrier]

I emphatically echo this sentiment. Though I’m not actively dying, I’m not approaching anything remotely resembling “living.” Moreover, my calculations estimate that my finances can weather another year of total disability, but nothing beyond that juncture.

I am cognizant that everyone’s circumstances and risk tolerance is unique, but given my exceedingly precarious spot, I too would trial anything that anecdotally bolstered a patient as severe as Whitney.

That’s how desperate I am.

Actually, I suspect many patients are in this category. Many are on the cusp of ending their lives, and if there is anything reasonably acceptable out there, they will try it. Many patients simply do not have years of waiting left.

 

[Alvin2]

That's very understandable and sixteen years into this disease I'm becoming more like this myself after chasing
treatments for years.
I do understand the strong desire that those who choose to try treatments early. We all have our own experience's and risk tolerance.

Fair enough.

 

[Alvin2]

I emphatically echo this sentiment. Though I’m not actively dying, I’m not approaching anything remotely resembling “living.” Moreover, my calculations estimate that my finances can weather another year of total disability, but nothing beyond that juncture.

I am cognizant that everyone’s circumstances and risk tolerance is unique, but given my exceedingly precarious spot, I too would trial anything that anecdotally bolstered a patient as severe as Whitney.

That’s how desperate I am.

You should figure out if you can get disability benefits or find some way to stretch your money becasue the chances of a breakthrough treatment that brings you back to normal within one year is very low.

Actually, I suspect many patients are in this category. Many are on the cusp of ending their lives, and if there is anything reasonably acceptable out there, they will try it. Many patients simply do not have years of waiting left.

But if we didn't have OMF they would have to wait anyways.

 

[The Bard]

You should figure out if you can get disability benefits or find some way to stretch your money becasue the chances of a breakthrough treatment that brings you back to normal within one year is very low.

I’m navigating the disability landscape at present, but with the high likelihood of failure prior to adjudication before an ALJ, the timeframe appears to extend beyond the twelve month mark.

I realize that a watershed moment in the disease is unlikely given the abridged twelve month period I mentioned, but I’ll continue to tighten the belt (and wallet) for as long as is feasible. I truly wish this illness offered us more in the way of options.

 

[lenora]

Hello @Whit .....First off, I hope you're feeling somewhat better. Second, thanks for weighing in on this subject. I'm impressed that your father shares as much as he does, and know you must feel responsible for sharing what he'd rather others not know at this point. (For their safety, of course.)

So much shouldn't be on your shoulders or your family's for that matter. I know they're doing their very best, and I think most people agree with them.

Grant money has been a problem since the early days of this illness and it takes forever to change this mentality. Look at the time & effort put into applying for the grants, and then having them turned down. I would suggest that people write letters to the NIH, better yet petitions.

Whitney's parents are a marvel...and I say that b/c I'm close in age to them, so I know exactly what they've undertaken. I think you'll find that their load is lighter after your post. They're admired. Thank-you....and feel better so that you can enjoy the outdoors at least a little. Yours, Lenora.

@dylemmaz, @bensmith and so many others....I know you understand and will help where you can. I'm just sorry that you're stuck with this illness. L.

 

[Alvin2]

Get a rockstar lawyer.
If you don't already have one make this your number one priority.

But see if you can get a reduced rate or free for low income clients in your locale.

 

[The Bard]

Get a rockstar lawyer.
If you don't already have one make this your number one priority.

But see if you can get a reduced rate or free for low income clients in your locale.

I was at the top of my class at Harvard Law School before succumbing to ME, which makes my inability to handle the legal elements all the more dystopian.

But I did retain quality counsel on a contingency fee basis so all set on the cost avoidance front! Thanks for your concern and advice though. It means a great deal to attract the concern of fellow sufferers.

 

[Alvin2]

I was at the top of my class at Harvard Law School before succumbing to ME, which makes my inability to handle the legal elements all the more dystopian.

But I did retain quality counsel on a contingency fee basis so all set on the cost avoidance front!

I know what you mean, i am also a shell of my former self.
Potential seems like a dystopian nightmare

Thanks for your concern and advice though. It means a great deal to attract the concern of fellow sufferers.

Anytime

 

[5vforest]

I have found the exact opposite around here many doctors are extremely wary of cutting edge medicine, just getting an off patent drug was not easy for me, the doctor was hesitant to even prescribe it becasue its their butt on the line. Their governing body does not take well to experimental treatment that harms patients.

Yeah, from what I see, it varies by location, willingness to travel, and willingness to pay. Obviously money can conquer pretty much any obstacle but it's not like us sick people have loads of it.

 

[perrier]

But if we didn't have OMF they would have to wait anyways.

There are In memorium pages on the internet, dedicated to ME, and there you will be aghast at the number of people who passed over. If there were no OMF, they would just continue to pass, as they still do continue. I suppose it's a question of how severe you are, how long you have been ill, and what supports you have. Whitney senses this. And so does Dr. Davis. It's a very rough journey. Best wishes.

 

[Riley]

My possibly naive goal is that these people will trust me and feel that hope without actually knowing the specifics.

I greatly appreciate you sharing, and I do take your comments in this spirit, and they do give me hope. I know other patients who do as well. I personally am not rabidly interested in the specifics because I have been around long enough to know that they are ultimately inconsequential to me until borne out through the proper scientific processes (antiretrovirals anyone?).

 

[Martin aka paused||M.E.]

I was at the top of my class at Harvard Law School before succumbing to ME, which makes my inability to handle the legal elements all the more dystopian.

But I did retain quality counsel on a contingency fee basis so all set on the cost avoidance front! Thanks for your concern and advice though. It means a great deal to attract the concern of fellow sufferers.

Hey, I was the same. Not at Harvard but a German U.
How I miss it. With Abilify I was able to do home office, write some contracts, make some calls. Now this is all memory.

But that's exactly the reason why Ron won't uncover which drug it is. Because he knows we would kill for it without knowing if it's safe.

I hope we all find some relief very soon!

 

[dylemmaz]

Hey, I was the same. Not at Harvard but a German U.
I hope we all find some relief very soon!

for the fun of it, does anyone have a timeline? any guesses until a treatment? in another forum i guessed 1-5 years, consensus seemed to be a decade was more realistic (i disagree). think its much more realistic it’ll be 1-5 years with how hard ron works and covid research. maybe i’m wrong though

 

[Martin aka paused||M.E.]

for the fun of it, does anyone have a timeline? any guesses until a treatment? in another forum i guessed 1-5 years, consensus seemed to be a decade was more realistic (i disagree). think its much more realistic it’ll be 1-5 years with how hard ron works and covid research. maybe i’m wrong though

I always think it's funny. I think that as long as nothing opens up over you and you get the answer to all your questions, that is impossible to put aside.
Abilify: did anyone expect it?

 

[Abrin]

Abilify: did anyone expect it?

I can't speak for anyone else but as someone who has been following ME/CFS research for decades upon decades now I have no problem admitting that the Abilify thing definitely surprised me.

 

[Rufous McKinney]

think its much more realistic it’ll be 1-5 years

Which seems to be why i stick mostly with: chinese tradional herbs, because they have really helped me reduce symptoms to a more tolerable level.

Otherwise? nothing much.

Between insurance denial, Medicare edicts, and the doctors discomfort within a broken medical system- getting off label drugs mostly has not worked for me.

LDN helped. thats about it. Doctors I see? Offer me nothing. I take it as a strong hint....

 

[Rufous McKinney]

I have no problem admitting that the Abilify thing definitely surprised me.

there is some consistent evidence that if you can reduce brain inflammation we can feel a lot less worse.

So these odd things are- doing that. With their persistent or various side effects to chose from, it seems.

 

[Martin aka paused||M.E.]

there is some consistent evidence that if you can reduce brain inflammation we can feel a lot less worse.

So these odd things are- doing that. With their persistent or various side effects to chose from, it seems.

Cortisone does nothing for me though I've been diagnosed with brain inflammation... I think it's a downstream effect... But I can't know of course