Scientist Ron Davis Interviewed by WBUR in Massachussetts (6 minute 23 of Q&A)

[Murph]

 

[ScottTriGuy]

So, that oddly familiar feeling I experienced when Dr Davis said 'by the end of summer', I think, is hope.

 

[Murph]

So, that oddly familiar feeling I experienced when Dr Davis said 'by the end of summer', I think, is hope.

It's a good feeling!

I expect he refers to this metabolic trap hypothesis: http://forums.phoenixrising.me/index.php?threads/a-metabolic-trap-for-me-cfs.58606/

 

[maybe some day]

You dont need a cape to be a hero

 

[Neunistiva]

So, that oddly familiar feeling I experienced when Dr Davis said 'by the end of summer', I think, is hope.

I think so too. But it's hard to tell. I haven't felt anything like it in a decade so I only have a dim memory of it. It might be just my IBS acting up.


Seriously though, it's great to have Dr. Davis and OMF.

 

[Gijs]

After 20 years i have no hope anymore. I don't believe he is going to find something. With all respect. This disease is to complicated because it is not one disease. But let me be wrong.

 

[Sidereal]

After 20 years I also have no realistic hope anymore. At the same time, it's important to keep in mind that technology advances in a non-linear fashion and that medical research even in the 1990s was basically in the stone age compared to today. It sounds like they have obtained a lot of funding recently. Combined with silicon valley spirit of can-do ingenuity I hold a tiny sliver of hope that something will be found.

 

[boolybooly]

Hope is only a problem where it biases perception of reality and influences decision making towards unhelpful choices. Where it is the basis for activity which potentially leads to helpful outcomes, it has to be a good thing.

My ME management strategy continues to be a logical response to adverse circumstances. I trust Prof Davis is seeking helpful outcomes for us all and wish him luck with that, if luck can help.

I believe he is correct about the systemic nature of ME and the central signalling hypothesis is consistent with that idea and my own experiences. However my immune failure apparently resulting from infection and subsequent viral proliferation suggest this may be just one aspect of a bigger story.

But if this systemic aspect is discovered then it should inform the discovery of the rest of the story.

 

[ljimbo423]

At 4:44 Ron Davis says -

"we think there's something going on that locks the patients into this and they can't get out of it.

If we can figure out what that control circuit is we may have a strategy to unlock it, that's our major effort at the moment.

Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease.

We have one primary circuit that we are looking at, at the moment, we should figure out whether that's right by the end of the summer".

My feeling is that researchers are zeroing in on the core problems. That will offer much more insight into solutions.

Jim

 

[maybe some day]

After 20 years I also have no realistic hope anymore. At the same time, it's important to keep in mind that technology advances in a non-linear fashion and that medical research even in the 1990s was basically in the stone age compared to today. It sounds like they have obtained a lot of funding recently. Combined with silicon valley spirit of can-do ingenuity I hold a tiny sliver of hope that something will be found.

I agree, I'm pushing 30 years with this illness. Back in the beginning, I was clipping magazine articles since the internet was just coming around. We have the biggest chance now at treatment than ever before. It is a chance though, and that's what I'm hoping for.

One thing that is different is that omf is a collaborated effort. So much time has gone by with doctors and researchers coming up with opinions. This is the first time scientist have grouped together and shared info on a large scale.

At 48, I've accepted that I may take this illness To My Grave. In the meantime if something comes along the pipe I'll look forward to taking advantage of it obviously.

 

[ebethc]

"Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease."

how would the central circuit be manipulated?

 

[frozenborderline]

Having looked at a lot of the research and what Ron Davis is doing, the researchers are doing impressive work with what they have, and I predict possible non-linear growth. The unfortunate thing is that I feel the limiting factor (like a limiting reactant in a chemical equation) is $$. $$ is desperately needed to speed up the research. It's going very fast for the amount of $$ they have.

 

[mariovitali]

I believe he is referring to a personalised regimen with no drugs ,possibly supplements

 

[ljimbo423]

"Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease."

how would the central circuit be manipulated?

That's the $64,000 question. Ron says this in the video-

We have one primary circuit that we are looking at, at the moment, we should figure out whether that's right by the end of the summer".

I also think it would be supplements and/or diet, that's needed to manipulate the "circuit". I think they need to make sure they know what 'circuit" is causing the problem before they could suggest a supplement protocol though.

If it's the circuit they are looking at now, he says they should know that by the end of summer.

Jim

 

[perrier]

Somewhere I seem to recall Dr Davis saying that treatment to reboot this circuit could pose risks, unless in the hands of physicians.

And as an aside: so many patients here have tried trillions of supplements, and then there are those who cannot tolerate any.

 

[ljimbo423]

Somewhere I seem to recall Dr Davis saying that treatment to reboot this circuit could pose risks, unless in the hands of physicians.

Hi perrier- is this what you are thinking of?

Because the treatment strategy would involve tweaking one of the major systems in the body, though, it has the potential to do either good or harm.

Worried that in the wrong hands, it could backfire – making ME/CFS patients worse – Davis and the Open Medicine Foundation are keeping the details of the possible metabolic trap under wraps until they know more about it.

https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/

And as an aside: so many patients here have tried trillions of supplements, and then there are those who cannot tolerate any.

Both good points. For those of us that can tolerate supplements. Hopefully they can give us some insight on how to better target the "circuit".

For those that can't tolerate supplements, maybe they could be helped through some type of diet change? There has to be something that can help those that can't tolerate supplements, I hope.

Jim

 

[nryanh94]

What I’m curious of is if the assay works so well at separating CFS from non CFS patients why can’t it be used as a diagnostic test yet?

 

[bthompsonjr1993]

"Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease."

how would the central circuit be manipulated?

It could be manipulated with a specific diet

 

[JES]

Regarding manipulating circuits, it does remind me a bit of existing approaches like DNRS or Gupta. These kind of approaches have been trialed by a large number of patients, without any huge success reported. And then there's the more general CBT of course, which could also be seen as manipulating circuits, depending on how you define it. I'm a bit afraid it will open the doors again for all kinds of random vague treatments, if the conclusion is that no drug is worth developing. I can already see the BPS crowd screaming "told you so".

I'm wondering what other serious diseases can be cured simply by "manipulating circuits", because I can't think of any. Well, I hope I'm wrong in my skepticism and that it would really work.

 

[Neunistiva]

What I’m curious of is if the assay works so well at separating CFS from non CFS patients why can’t it be used as a diagnostic test yet?

If I remember correctly, only about 10 patients and 10 controls have been tested so far. Only one member of Dr. Davis' team knew how to make them properly so instead of making new ones they resorted to cleaning the existing ones. And then our blood started getting stuck in the needles which became a clue that our red blood cells might not be as elastic as they're supposed to be.

Also for something to become a diagnostic test it needs to go to rigorous rounds of scientific research, NIH approval and then adoption in every lab around the world. Can you imagine how long that takes?

NIH refused to finance the research because they haven't approved it, and they won't approve it because there is no research. Imagine that.

Please someone correct me if I remembered something wrongly.