Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

[BurnA]

That was me reading!

Read extremely eloquently and clearly so that it was very easy to listen to! Thanks

 

[Janet Dafoe]

I heard that too.

No,not yet.

 

[eljefe19]

I volunteer to be a guinea pig for all the 'fun' FDA approved drugs!

 

[PatJ]

Can you not switch of the sound and use the undertiteks?

Auto generated captions usually leave a lot to be desired. With the last video of Dr. Davis I tried the auto captioning and was left wondering what he was saying at quite a few places. A kind member of PR created a transcript and posted it the previous video thread.

Brain fog makes understanding things difficult enough but auto captions confuse things even more with their curious interpretations. My brain fog also increases the longer I look at a computer monitor so reading a transcript is much faster for me than relying on captions, even accurate ones.

 

[BruceInOz]

Somehow I have the feeling that if it's just a matter of flipping a switch there would be a higher rate of spontaneous recovery. Is there anything inconsistent with it being an autoantibody that is the thing in the serum?

 

[AndyPR]

Auto generated captions usually leave a lot to be desired. With the last video of Dr. Davis I tried the auto captioning and was left wondering what he was saying at quite a few places. A kind member of PR created a transcript and posted it the previous video thread.

Brain fog makes understanding things difficult enough but auto captions confuse things even more with their curious interpretations. My brain fog also increases the longer I look at a computer monitor so reading a transcript is much faster for me than relying on captions, even accurate ones.

Unless someone else beats me to it, I'll look to do a transcript of this tomorrow at some point. I would do it now but I need to go to bed.

 

[Wolfiness]

That was me reading! And every question was read word for word as submitted except one, but the only change in that one was changing "Dr Davis" to "you" and the pronouns!

Oops sorry @Rose49, many thanks . I really like the mantelpiece too.

 

[Wolfiness]

So could The Culprit still be a virus or would that be too big?

 

[Marky90]

They need 5$ million a year for several years.

Patient donations aren't going to be enough. And the NIH isn't providing enough funding. What should we do? Lobby for specific funding for this project? Go begging to billionaire philantropists?

I saw a documentary about a video game company who made 3 million in one day through Kickstarter (obsidian entertainment), for an old school RPG. 77 000 people contributed, but probably some of the contributions were investments. Still, should be possible if the research is clearly presented up front.

Btw, thanks again OMF, Ben, and the Davies. These frequent interractions with the patient keep my hopes up.I had been thinking about using filters after hearing about the impedance-finding, so was fun and encouracing to hear that indeed that has been done.

Let`s go!

 

[Marky90]

So could The Culprit still be a virus or would that be too big?

Could be a load of things, and a virus is no more likely than any other scenario imo.

 

[Janet Dafoe]

Somehow I have the feeling that if it's just a matter of flipping a switch there would be a higher rate of spontaneous recovery. Is there anything inconsistent with it being an autoantibody that is the thing in the serum?

No

 

[Marky90]

No

Yeah not at all, but the research on rituximab indicates that it might be complicated, like in Lupus. For most people we cant just eliminate the b-cells in serum. But maybe there are pathological b-cells elsewhere. Or maybe long lived plasma cells are the culprits, either in serum, or elsewhere..

 

[nandixon]

Some antidepressants also activate mTOR. This would suggest that mTOR may not be important because antidepressants are commonly prescribed and don't actually seem to be working well in this illness.

It's necessary to look at the different classes of antidepressants individually as to their effects on mTOR (mTORC1).

At one extreme is ketamine, which generates the metabolite hydroxynorketamine (HNK) - perhaps the most potent activator of mTORC1 potentially available right now. In his work with thousands of ME/CFS patients, Dr Jay Goldstein found that ketamine was the most successful (at least temporarily) of all the drugs he tried - and he tried a very large number over many years. So that appears consistent.

At the other extreme there are the tricyclic antidepressants, like Elavil. These are very potent mTOR inhibitors, and most ME/CFS patients who try them at normal (100mg+) doses find they cause a severe exacerbation of fatigue, even lasting for days after a single dose. So that also seems consistent.

In the middle are SSRIs, whose effects on mTORC1 are all over the place, with some activating, some inhibiting, and some having no effect at all. And the ones that do activate the mTORC1 pathway are either very weak or overly specific as to cell or tissue type.

So unfortunately, the only “antidepressant” really worth trying in ME/CFS (for purposes of mTOR), namely HNK, has never actually been available until very recently. The NIH is in the process of putting together clinical trials for the 2R,6R version of HNK right now - for depression, unfortunately. But the beneficial effect of HNK in ME/CFS might only be temporary for many or most people anyway. (For more info on ketamine and HNK, see some of my prior posts here.)

 

[Murph]

Loved the video.

Just to follow up on the discussion of mTor activation above, and a possible role for Leucine, some people may have seen another thread in this forum which I discuss my experience taking amino acid supplementation, which was recommended to me by Dr Lewis who is involved in some of the metabolism research here in Melbourne.

He recommended a whey protein isolate which is very high in the branch chain amino acids, including Leucine. His theory (I think) is that energy pathway blocks can be circumvented by feeding the energy pathways amino acids instead of glucose, etc.

I can offer only anecdotal evidence, but the period in which I have been taking it has been my best period of health in a long time, and the higher the dose, the better I've felt.

I have been able to walk more than 10,000 steps a day on a number of days without much PEM, I have muscle mass now that I didn't a few months ago, and I am considering rejoining a soccer team I was forced to quit a number of years ago. The Naviaux research showed that in men (I'm male) the body is breaking down muscle to access extra amino acids. Perhaps this supplementation is helping feed the energy pathway, perhaps it's improving mTor, perhaps avoiding the downsides of catabolism - I am not sure.

Also I'm not saying I'm cured. I still have CFS and am limited in what I can do. It's just that my PEM reactions seem to have changed somewhat! Also, I can't prove the whey is the reason for my apparent improvement and I am not going to *recommend* anyone take it. Everyone is different and many have tried it without success. But it is pretty tasty, low risk (I am dairy intolerant because of casein, but whey protein isolate contains no casein) and readily available online. (If you're desperate for ideas it's probably safer than, say, buying ketamine on the darknet!! )

If anyone has any questions about this I'd be happy to answer them.

 

[Louie]

Thanks so much @keenly




We do need to appeal to philanthropists so any suggestions or thoughts on that would be great. Its something OMF are working on.



Thanks so much@Petko21 !

I think appealing to philanthropists is a very good approach as this disease is now at the stage where some very wealthy philanthropists would be attracted to support it. Philanthropists like a cause that has been ignored by governments without good reason. I would encourage OMF to pursue this. I would donate $20,000.00 to OMF for the purpose of soliciting philanthropists as I think it would pay huge dividends.

 

[Kati]

I think appealing to philanthropists is a very good approach as this disease is now at the stage where some very wealthy philanthropists would be attracted to support it. Philanthropists like a cause that has been ignored by governments without good reason. I would encourage OMF to pursue this. I would donate $20,000.00 to OMF for the purpose of soliciting philanthropists as I think it would pay huge dividends.

By all means connect with Linda Tannenbaum and @Rose49 for this interesting offer.

 

[eljefe19]

Loved the video.

Just to follow up on the discussion of mTor activation above, and a possible role for Leucine, some people may have seen another thread in this forum which I discuss my experience taking amino acid supplementation, which was recommended to me by Dr Lewis who is involved in some of the metabolism research here in Melbourne.

He recommended a whey protein isolate which is very high in the branch chain amino acids, including Leucine. His theory (I think) is that energy pathway blocks can be circumvented by feeding the energy pathways amino acids instead of glucose, etc.

I can offer only anecdotal evidence, but the period in which I have been taking it has been my best period of health in a long time, and the higher the dose, the better I've felt.

I have been able to walk more than 10,000 steps a day on a number of days without much PEM, I have muscle mass now that I didn't a few months ago, and I am considering rejoining a soccer team I was forced to quit a number of years ago. The Naviaux research showed that in men (I'm male) the body is breaking down muscle to access extra amino acids. Perhaps this supplementation is helping feed the energy pathway, perhaps it's improving mTor, perhaps avoiding the downsides of catabolism - I am not sure.

Also I'm not saying I'm cured. I still have CFS and am limited in what I can do. It's just that my PEM reactions seem to have changed somewhat! Also, I can't prove the whey is the reason for my apparent improvement and I am not going to *recommend* anyone take it. Everyone is different and many have tried it without success. But it is pretty tasty, low risk (I am dairy intolerant because of casein, but whey protein isolate contains no casein) and readily available online. (If you're desperate for ideas it's probably safer than, say, buying ketamine on the darknet!! )

If anyone has any questions about this I'd be happy to answer them.

This is exactly how mTOR activators have affected me as well. The best health I've been in in a while but still limited. PEM greatly reduced. Leucine actually upregulates mTOR.

 

[eljefe19]

@Murph I agree, Leucine is certainly safer than dark net Ketamine, but I like the shotgun approach to treating my CFS.

 

[Belbyr]

As some said earlier in the thread. I was also on tetracycline twice a day for acne at the time of getting sick.

 

[Marky90]

@keenly Just FYI, while aerobic exercise inhibits mTOR in healthy people, anaerobic exercise activates mTOR. Personally I've found that I can do some weights without much PEM.

same, still feel foggy but not as complete crap as when running