it seems ron davis may have a new potential treatment

[dylemmaz]

whitney updated me today on his newest instagram post that he has started the new medication. he said he is titrating the dose up very slowly. said he won’t be updating us on how it affects him because he doesn’t want to instill false hope. hopefully we see improvement through his documentation though. just wanted to let everyone know. fingers crossed it helps him!! i’m assuming we may not know for a while if it will help or not though?

 

[Martin aka paused||M.E.]

whitney updated me today on his newest instagram post that he has started the new medication. he said he is titrating the dose up very slowly. said he won’t be updating us on how it affects him because he doesn’t want to instill false hope. hopefully we see improvement through his documentation though. just wanted to let everyone know. fingers crossed it helps him!! i’m assuming we may not know for a while if it will help or not though?

It's getting exciting

 

[Reading_Steiner]

thats interesting, could the robot not just be repaired by the company that originally sold it ? or is it so old that nobody knows how it works anymore sort of thing ? would have thought stanford would have all the cutting edge machines everywhere.

 

[Martin aka paused||M.E.]

thats interesting, could the robot not just be repaired by the company that originally sold it ? or is it so old that nobody knows how it works anymore sort of thing ? would have thought stanford would have all the cutting edge machines everywhere.

I think they are not that stupid that they forgot to contact the manufacturer

 

[dylemmaz]

does anyone know if i was to start a fundraiser on the open medicine foundation website if i could explicitly send the funds to rons lab? or does it not allow me to do that and it just goes to the omf in general?

 

[junkcrap50]

Would it be cheaper to outsource the testing of all the drugs on the yeast if they can't fix the robot easily or without great time/expense? Does anyone else at Stanford, like in medical research, not have these machines they could rent time on?

 

[Martin aka paused||M.E.]

Would it be cheaper to outsource the testing of all the drugs on the yeast if they can't fix the robot easily or without great time/expense? Does anyone else at Stanford, like in medical research, not have these machines they could rent time on?

Why don’t you ask Janet … how should we know?

 

[junkcrap50]

Why don’t you ask Janet … how should we know?

Nah, my question's not relevant or important to bother Janet. I'm sure they checked out what's available at Stanford. Just was wondering out loud (I was wondering about what the robot looked like but edited out most of the wondering.

It seems to me like this Stanford lab does does mass drug library screening: https://med.stanford.edu/htbc.html. Plus, even if they are able to do our ME/CFS screening, there could be tons of different hurdles: scheduling availability, study approval, adding more people to the research, not exactly being able to do our study without some preventative customization, and obviously cost of using their lab. I thought I remember they got a deal on the robot because it was broken. So I'm sure they're trying their best with limited resources.

 

[Martin aka paused||M.E.]

Nah, my question's not relevant or important to bother Janet. I'm sure they checked out what's available at Stanford. Just wondered out loud.

It seems to me like this Stanford lab does does mass drug library screening: https://med.stanford.edu/htbc.html. Plus, even if they are able to do our ME/CFS screening, there could be tons of different hurdles: scheduling availability, study approval, adding more people to the research, not exactly being able to do our study without some preventative customization, and obviously cost of using their lab. I thought I remember they got a deal on the robot because it was broken. So I'm sure they're trying their best with limited resources.

Exactly

 

[Alvin2]

whitney updated me today on his newest instagram post that he has started the new medication. he said he is titrating the dose up very slowly. said he won’t be updating us on how it affects him because he doesn’t want to instill false hope. hopefully we see improvement through his documentation though. just wanted to let everyone know. fingers crossed it helps him!! i’m assuming we may not know for a while if it will help or not though?

From the sounds of this they might have a rockstar idea becasue knowing a treatment might work, already knowing it has to be titrated and if things get worse before they get better then knowing that the worsening is transient is all information that has to come from somewhere.
That said science is not linear, sometimes rockstar ideas fall flat or unlikely ideas work great, the only way to find out is the hard way.

does anyone know if i was to start a fundraiser on the open medicine foundation website if i could explicitly send the funds to rons lab? or does it not allow me to do that and it just goes to the omf in general?

Its best to wait until Ron tells us what the cost is so you have a number to work with. And so that you are raising money for a specific purpose.

 

[Martin aka paused||M.E.]

From the sounds of this they might have a rockstar idea becasue knowing a treatment might work, already knowing it has to be titrated and if things get worse before they get better then knowing that the worsening is transient is all information that has to come from somewhere.
That said science is not linear, sometimes rockstar ideas fall flat or unlikely ideas work great, the only way to find out is the hard way.


Its best to wait until Ron tells us what the cost is so you have a number to work with. And so that you are raising money for a specific purpose instead of general revenues.

Maybe we don’t need the f… robots bc we are all cured by the end of the year

 

[Alvin2]

Maybe we don’t need the f… robots bc we are all cured by the end of the year

Wouldn't that be nice.
But we are hilariously terrible at predicting the future.
Even the experts have a very poor success rate. If you look at futurists from 50 years ago they thought we would be far ahead of where we are today, from flying cars to living on the moon.

Heck we can't even predict trends in stocks with any certainty, the stock market drop after covid hit lasted a day before it started going back up to above where it started (which was not predicted at all) and oil prices went from below zero to the highest in 5(?) years in 1 months.

And of course the next breakthrough is always 5-10 years away, from treatments for ME to solid state batteries to medicine. As i recall from a recent PR thread an ME researcher (Dr Scheibenbogen) has said we would likely have a ME treatments in a few years (more than a few years ago). Heck the doctor who helped with my ME application was told by her professor that by the time she retired we would have a cure for MS. She retired a couple years ago

 

[Martin aka paused||M.E.]

Wouldn't that be nice.
But we are hilariously terrible at predicting the future.
Even the experts have a very poor success rate. If you look at futurists from 50 years ago they thought we would be far ahead of where we are today, from flying cars to living on the moon.

Heck we can't even predict trends in stocks with any certainty, the stock market drop after covid hit lasted a day before it started going back up to above where it started (which was not predicted at all) and oil prices went from below zero to the highest in 5(?) years in 1 months.

And of course the next breakthrough is always 5-10 years away, from treatments for ME to solid state batteries to medicine. As i recall from a recent PR thread an ME researcher (Dr Scheibenbogen) has said we would likely have a ME treatments in a few years (more than a few years ago). Heck the doctor who helped with my ME application was told by her professor that by the time she retired we would have a cure for MS. She retired a couple years ago

Oh please. Not that Scheibenbogen topic.

 

[Alvin2]

Oh please. Not that Scheibenbogen topic.

My point is simply one can't predict the future.
I saw one of her presentations, she is an excellent researcher, we are very lucky to have her on our side.
All i am saying is that timeframes are unreliable.

 

[Martin aka paused||M.E.]

My point is simply one can't predict the future.
I saw one of her presentations, she is an excellent researcher, we are very lucky to have her on our side.
All i am saying is that timeframes are unreliable.

That's why I said here or in another thread that you can't give timelines in research

 

[barabara]

I expect developments to be as slow as they've been for decades, so long as the participating minds continue their patterns of narrow-minded thinking.

It's a trick of the mind to expect results after investing much money. In order to solve a problem, first and foremost, one must have the right tools. Buying the highest quantity of them, even the highest quality of them, doesn't solve the problem. What is of greatest importance is the type of tools.

ME/CFS has a cure. Some people have recovered from it, thus by definition, intentionally or not, they cured themselves.

The cause of this disease is damage, often caused by viruses. The wounded metabolism causes damage during exertion. The body senses the damage and thinks there's an infection, so it activates the immune system, causing brain fog and what is known as PEM.

This is still considered to be an immunological disease despite research showing that mitochondrial damage is involved. ME/CFS treatment in the medical system has a negative track record because of their GET and CBT trials. And yet, people expect a cure from it.

A community of people with a similar disease as you is as good as it gets. There are people who improved, as well as got worse, through various approches and treatments. You only have to rely on your own judgement, trial, and error to determine what works for you.

If you do this, you'll get better faster than the magic bullet finally manages to break through. I don't know about Superman, but I know that Goku is always late. Most of the time, someone is already gone before he arrives. But in this case, there are no magic beans that can heal you instantly. Best case scenario, they could help you heal over time, but there are already things that can do that, that are available right now.

 

[Martin aka paused||M.E.]

I expect developments to be as slow as they've been for decades, so long as the participating minds continue their patterns of narrow-minded thinking.

It's a trick of the mind to expect results after investing much money. In order to solve a problem, first and foremost, one must have the right tools. Buying the highest quantity of them, even the highest quality of them, doesn't solve the problem. What is of greatest importance is the type of tools.

ME/CFS has a cure. Some people have recovered from it, thus by definition, intentionally or not, they cured themselves.

The cause of this disease is damage, often caused by viruses. The wounded metabolism causes damage during exertion. The body senses the damage and thinks there's an infection, so it activates the immune system, causing brain fog and what is known as PEM.

This is still considered to be an immunological disease despite research showing that mitochondrial damage is involved. ME/CFS treatment in the medical system has a negative track record because of their GET and CBT trials. And yet, people expect a cure from it.

A community of people with a similar disease as you is as good as it gets. There are people who improved, as well as got worse, through various approches and treatments. You only have to rely on your own judgement, trial, and error to determine what works for you.

If you do this, you'll get better faster than the magic bullet finally manages to break through. I don't know about Superman, but I know that Goku is always late. Most of the time, someone is already gone before he arrives. But in this case, there are no magic beans that can heal you instantly. Best case scenario, they could help you heal over time, but there are already things that can do that, that are available right now.

Yes and the majority doesn't get substantially better but needs “the magic bullet”.

 

[Aidan Walsh]

Save the money. It's easier just to take it and see if you benefit. I don't.

That is how one misses Pernicious Anemia, because Oral B12 does not work then if taking oral ones & injections are needed then the person has to be free of B12 for months & avoid cereals with add vitamins for one week before PA tests...

MMA, Homosysteine, Intrinsic Factor are some tests to run without vitamins, fasting 12 hours the day of the test. Absorption issues in PA...

 

[perrier]

whitney updated me today on his newest instagram post that he has started the new medication. he said he is titrating the dose up very slowly. said he won’t be updating us on how it affects him because he doesn’t want to instill false hope. hopefully we see improvement through his documentation though. just wanted to let everyone know. fingers crossed it helps him!! i’m assuming we may not know for a while if it will help or not though?

I guess we don't have even the faintest glimpse into what family of medication this might be, do we? Is it from psychiatric pharmacology, or mitochondrial, or what? If you have a glimpse, please indicate. I am glad dylmmaz that Whitney is in touch with you. Thanks in advance.

 

[Martin aka paused||M.E.]

I guess we don't have even the faintest glimpse into what family of medication this might be, do we? Is it from psychiatric pharmacology, or mitochondrial, or what? If you have a glimpse, please indicate. I am glad dylmmaz that Whitney is in touch with you. Thanks in advance.

He won't tell us