An Update on ME/CFS Research with Ronald W. Davis, PhD

[picante]

Quite honestly, people have tried a gammut of non toxic and non patented treatments. What is needed is effective treatments that are tested in clinical trials and approved by drug regulating bodies for efficacy and safety. The last thing we need (and this is my opinion) is yet another vitamin protocol. Time for science and medicine to reign.

Actually, given the way Dr. Davis & team are funded, there is a huge opportunity here to not limit identification of possible treatments in the way they are limited by the medical industry, and I'm sure they know that.

Patentability increases profits by a long shot, and monopolies increase them even more. The profit motive has made the entire industry blind to the accumulated medical wisdom of the world's oldest cultures. They're looking for health in all the wrong places. Look at the rates of iatrogenic disease. For all we know, ME/CFS may be iatrogenic.

Naturally occurring substances are not necessarily non-toxic, and any good candidates found would need study and possibly development. But there is a whole world of traditional medicine (Ayurvedic and TCM, for example) to draw on in the search for ways to rebalance the metabolic pathways and neuro-immune mechanisms involved.

 

[aquariusgirl]

In the subject if insulin:

https://www.nia.nih.gov/alzheimers/clinical-trials/study-nasal-insulin-fight-forgetfulness-sniff
http://www.lostfalco.com/intranasal-insulin/


Separately

http://www.diabetesincontrol.com/research-may-re-define-management-of-heart-failure-in-diabetes/

http://i.stuff.co.nz/business/industries/4219186/Protemix-co-founders-buy-back-assets

 

[AndyPR]

The 'test subject' is the patients blood @AndyPR

Is that where the confusion lay? To confirm-there arn't patients chained up at the Genome Centre with current being dealt and impedance being measured while biochemists scream 'MORE, MORE I SAY, MUWAHAHAHAHAHA'.

Sorry. I had to.


B

Sorry, didn't make myself clear. I've seen some people think it's measuring the electrical activity of the blood itself, whereas my assumption is that there is an electrical current introduced as a way to measure the resistance across the blood sample.

 

[slysaint]

electrical activity of the blood itself

 

[Kati]

Naturally occurring substances are not necessarily non-toxic, and any good candidates found would need study and possibly development. But there is a whole world of traditional medicine (Ayurvedic and TCM, for example) to draw on in the search for ways to rebalance the metabolic pathways and neuro-immune mechanisms involved.

You'll be pleased to hear that Dr Davis's team is already trying acupuncture on the mitochondria using very fine needles to reach them.

As for Ayurveda or whatever you call it, the last person I know who tried that unfortunately died... by suicide. If you are willing to try Ayurveda, go right ahead, you know? It's available and people charge a lot of money to pour oil on your head. This is not currently used in hospitals because it hasn't passed the test of science. Read more from Wiki which describes it as pseudoscience.

I have been on this forum for over 7 years now. Very few is any at all are off the forums because they are cured. This opportunity to engage the very best brains of science is a great opportunity to finally open the door wide open, and give access to the field of medicine. There will always be a group who think they can heal themselves naturally, and that's fine. However, there is also a crowd who want mainstream clinical trials and treatments through western science, and best evidence available and I sincerely hope that this is what our researchers have in mind.

 

[mango]

The 'test subject' is the patients blood @AndyPR

Is that where the confusion lay? To confirm-there arn't patients chained up at the Genome Centre with current being dealt and impedance being measured while biochemists scream 'MORE, MORE I SAY, MUWAHAHAHAHAHA'.

Sorry. I had to.

Careful, the PACE authors read this forum. You could give them ideas for their next treatment, now that CBT/GET are on their way out.

I'm sorry, but jokes like these just make me feel deeply sick to my stomach...

A friend of mine, who as ME, was forced to undergo electroconvulsive therapy some years ago, and there are doctors at at least one ME/CFS center currently very eager to start "treating" ME patients with deep brain stimulation...

 

[me/cfs 27931]

I'm sorry, but jokes like these just make me feel deeply sick to my stomach...

A friend of mine, who as ME, was forced to undergo electroconvulsive therapy some years ago, and there are doctors at at least one ME/CFS center currently very eager to start "treating" ME patients with deep brain stimulation...

As someone with ME who was locked up and forced to undergo ECT, I enjoy the jokes. Humor is one of the few things that has gotten me through this difficult thing called life.

 

[TigerLilea]

Quite honestly, people have tried a gammut of non toxic and non patented treatments. What is needed is effective treatments that are tested in clinical trials and approved by drug regulating bodies for efficacy and safety. The last thing we need (and this is my opinion) is yet another vitamin protocol. Time for science and medicine to reign.

That's what I was thinking, also, Kati.

Valtrex, Rituximab, and others. Hopefully they include, Methylcobalamin (B12), Magnesium, Zinc and all the other commonly used adjuncts

I would think that if these things were going to work, we would know about it by now, and there would be no more need for PR.

 

[Yabisa]

One wonders how many times it has to be "proven for the first time" as in the recent Australian press release!

Have you got any idea why we have to demonstrate it so many times? I can't understand it.

 

[alicec]

Is it possible to keep filtering the serum, checking for its impact on blood cells after every filtration, while reducing/increasing the pore size until only very few candidates are left?

No. Filtration is a way a getting a ballpark estimate of size in order to know the broad type of molecule involved - a small molecule like a metabolite, a medium sized molecule like a peptide, a large molecule like a protein etc.

Thousands of molecules would be in the various categories which can be separated by pore size.

A variety of other techniques would then be needed to further separate the molecules.

 

[Forbin]

Without knowing what the molecule(s) is, I would assume that it is not possible to determine its concentration in the serum.

On the other hand, I wonder if you could dilute patient serum with "healthy" serum, in small increments, until the impedance increase following forced cell energy consumption was no longer observed.

Again, this would not establish the absolute concentration of the molecule in the serum, but it might show its relative concentration among patients (depending on how much dilution was necessary in each person to inhibit the reaction).

If this were possible, it might reveal a couple of things, such as if higher relative concentration was an indicator of greater illness severity, and, perhaps, if relative concentration corresponded to Rituximab response.


Fluge and Mella have proposed that the concentration of an unknown factor is responsible for the varied responses to B-cell depletion.

 

[Barry53]

Always on something . But this time I'm blaming Storm Doris for rocking my trip to the west country

People are starting to call this Doris Day. Maybe explain your 'bumpy trip'?

 

[aquariusgirl]

The question is what could cause such pervasive metabolic chaos? & does anyone really think that a drug or set of drugs can fix it? If you look @ the autism kids they are supplementing everything. It's unreal. That diagram is chilling.

 

[halcyon]

I'm under the impression that the infection-driven hypothesis as the cause of the disease seems to have been abandoned or at least considered much less likely given recent research findings,

You might also abandon the idea that another continent existed if you never went there and looked for yourself. In my opinion (and that of at least one major ME researcher) none of these findings are incompatible in any way with the viral hypothesis.

"In most of the cases of ME/CFS that I have seen where IgG antibody titers have been measured before, during, and after antiviral therapy, the antibody titers remain high after treatment, even though the patient may report symptomatic improvement.
I believe the symptomatic improvement after antiviral treatment may have more to do with the metabolic effects of antivirals in ME/CFS than their action on viral replication."

This is refuted by several studies.

 

[Lolo]

Actually, given the way Dr. Davis & team are funded, there is a huge opportunity here to not limit identification of possible treatments in the way they are limited by the medical industry, and I'm sure they know that.

Patentability increases profits by a long shot, and monopolies increase them even more. The profit motive has made the entire industry blind to the accumulated medical wisdom of the world's oldest cultures. They're looking for health in all the wrong places. Look at the rates of iatrogenic disease. For all we know, ME/CFS may be iatrogenic.

Naturally occurring substances are not necessarily non-toxic, and any good candidates found would need study and possibly development. But there is a whole world of traditional medicine (Ayurvedic and TCM, for example) to draw on in the search for ways to rebalance the metabolic pathways and neuro-immune mechanisms involved.

My sentiments exactly. Iatrogensis has killed many worldwide. My brain can't articulate what I want to say. Please do no harm.

 

[Wolfiness]

Could this potentially affect how some people become more severely affected? My wife is towards the milder end of moderately affected I would say, and has no medication for her ME. She does take a small amount of D-Ribose.

and potentially explain why there may be slow onset as well as rapid?

I have extremely slow onset, extremely severe ME with virtually no immune symptoms, to the point where I wonder whether I should try getting tested for conventional mitochondrial disease instead. The no-persistent-pathogen theory sounds right to me. The idea of a system in a kind of permanent panic shutdown accords with my experience of a ceiling which easily goes down and never goes back up again on its own.

 

[Wolfiness]

You might also abandon the idea that another continent existed if you never went there and looked for yourself. In my opinion (and that of at least one major ME researcher) none of these findings are incompatible in any way with the viral hypothesis.


This is refuted by several studies.

References?

 

[picante]

You'll be pleased to hear that Dr Davis's team is already trying acupuncture on the mitochondria using very fine needles to reach them.

Interesting.

As for Ayurveda or whatever you call it, the last person I know who tried that unfortunately died... by suicide. If you are willing to try Ayurveda, go right ahead, you know? It's available and people charge a lot of money to pour oil on your head. This is not currently used in hospitals because it hasn't passed the test of science. Read more from Wiki which describes it as pseudoscience.

You misunderstand me. I'm not suggesting using Ayurveda; I'm suggesting that the herbs and other substances identified in Indian/Chinese/indigenous medicine could readily be checked using the new "chip" if there are some that have a history of use for our particular metabolic impairments.

I must make this point: if you run this "discovery" process only on synthetic patentable substances, you would be putting on the same blinders that the research establishment often does. Some of what we call "science" is really not very scientific, when you consider the assumptions being made.

This opportunity to engage the very best brains of science is a great opportunity to finally open the door wide open, and give access to the field of medicine.

The best brains of science are the ones who don't make assumptions like the one I just mentioned. And the "field of medicine" as a whole has had decades to study this disease. They've wasted precious research $$ pushing psychobabble studies and denying funding to the best brains of science. That is why I see Dr. Davis' discovery work as a powerful opportunity to keep off the blinders and identify possible treatments from all categories. It's a way to bypass this captured medical system and give a jump-start to scientists within the system, who need data.

 

[halcyon]

References?

Brook et al. 1993 and Chia 2004, both studies on interferon alpha treatment of ME. In both, responders had enterovirus antibody titers drop in response to treatment. Some responders don't drop, but that is meaningless as antibody titer is not a direct measure of viral load and it can take several months after resolution of infection for antibody concentration to drop.

 

[M Paine]

On the other hand, I wonder if you could dilute patient serum with "healthy" serum, in small increments, until the impedance increase (following forced cell energy consumption) was no longer observed.

What you are describing is called serial dilution, and is used commonly in labs. For example, in virology a measurement in PFU (Plaque Forming Units) is calculated by performing serial dilutions in a plaque assay.

I think we should all trust that Ron and his team are extremely skilled in this area, and will use the most appropriate and efficient technique fit for purpose.