Research update from Prof. Ron Davis (video!)

RYO

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Dr. Davis around the 12 minute mark says, "some of the biochemistry going on looks a little bit like diabetes".

Does anyone know if Dr. Davis referring to Type 1 or Type 2 diabetes?

T-cell abnormalities have been implicated in both types of diabetes.
I would assume he is referring to type 2 diabetes since he mentions a patient trying metformin. I could be wrong but my impression is that cells from ME/CFS patients have some sort of defect that prevents efficient use glucose.

What is confounding is that probably most ME/CFS patients have normal blood sugar levels unless that have concomitant type 2 diabetes.

Hallmark of type 1 diabetes is lack of insulin leading to ketoacidosis. A defect that is promptly reversed with administration of exogenous insulin and IV fluids.
 
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RYO

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Oh, I'm not sure he did. Didn't he say that he wasn't finding any viruses? But that they would continue to search with different tests. He said we now know that if there's an infection anywhere in the body, you end up with that pathogen's DNA in the blood. So they want to look for bits of DNA. That goes for any type of pathogen.
The example of shingles or herpes zoster is often used as an example of a dormant virus that is latent in peripheral nerve cells that gets reactivated with advancing age and associated changes in immune system. It would be interesting to see if any evidence of herpes zoster infection can be found in the serum of patients with a history of chicken pox. If the answer is no, perhaps this suggests that researchers must examine actual target tissue samples.

My guess would be that at least some of the tested ME/CFS patients (depending on age) have a history of childhood chicken pox. Perhaps this suggests we need to look at tissue samples if feasible.
 
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Mary

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Heart output significantly controlled by cell volume. Small study but highly significant. Correlated to CFS severity.

https://www.ncbi.nlm.nih.gov/m/pubmed/19469714/

The cell volumes have been extensively studied.and consistent with POTS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664448/

I think from memory taurine has significant effect on cell volume regulation.
Personally when i expose myself to cell volume enhancers..(or my perception of.cell volume improvers)..hot countries..humidity....baths and sauna my symptoms improve dramatically.
I think Arnold Peckerman found the same thing here:
https://www.ncbi.nlm.nih.gov/pubmed/12920435
http://citeseerx.ist.psu.edu/viewdo...4C39B2D?doi=10.1.1.578.7514&rep=rep1&type=pdf

I had two impedance cardiographies done around 10-12 years ago, both were quite abnormal.
 
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That is great to hear!:) I was taking nattokinase but can't now as I have to take a specific type of anti-coagulant due to Afib and I can't add to the anti-coagulation effect with other remedies without becoming at risk for bleeds.
@Sushi

Sorry to hear that. However, there might be a chance of tolerating a small amount of digestive enzymes taken either with meals (may already be doing this) or between meals (for greater anticoag. effect). That is what @PWR (Peace without Rest) does. This might be less likely to cause bleeding since it's similar to our digestive juices and enzymes, which are part of the usual immune defense mechanism AND keeping the blood naturally thinned. Just a thought.

BTW: A premium product (at a premium price) is Enzymedica Digest Gold Plus Probiotics; the synergy of the probiotics with the enzymes greatly increases the effectiveness.

RWP (Rest without Peace)
 
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Binkie4

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https://www.nature.com/articles/gim920112

Those with the genetic condition factor v (5) leiden have sticky blood. Most probably do not know this because it does not show on ordinary blood test. I needed a thrombophiilia screen to identify that I have it, and from that my mother, aged 75, one sister and my daughter, were diagnosed as heterozygous for factor v.
Article in Nature on link above gives prevalence data. @JanetDafoe.
 

lauluce

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I would assume he is referring to type 2 diabetes since he mentions a patient trying metformin. I could be wrong but my impression is that cells from ME/CFS patients have some sort of defect that prevents efficient use glucose.

What is confounding is that probably most ME/CFS patients have normal blood sugar levels unless that have concomitant type 2 diabetes.

Hallmark of type 1 diabetes is lack of insulin leading to ketoacidosis. A defect that is promptly reversed with administration of exogenous insulin and IV fluids.
metformin? should I try that? my wife takes it for type 2 diabetes...
 

ljimbo423

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metformin? should I try that? my wife takes it for type 2 diabetes...
Hi lauluce - Metformin inhibits mito. complex 1, lowers ATP levels and increases lactate as well as lowers blood sugar-

New mechanisms of metformin action: Focusing on mitochondria and the gut

Metformin inhibits mitochondrial complex I, mitochondrial shuttle and glucagon signaling. Metformin diminishes mitochondrial complex I activity. Decreased adenosine triphosphate (ATP) and increased adenosine -

monophosphate (AMP) content by metformin as a result of decreased mitochondrial complex activity contributes to adenosine monophosphate-activated protein kinase (AMPK) activation.

Decreased cytosolic oxidized form of nicotinamide adenine dinucleotide (NAD+) leads to the accumulation of lactate, which is frequently observed during metformin treatment.
On a more positive note, it also says metformin improves gut microbiota and lowers inflammation. Maybe some things to consider while weighing the pros and cons?



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4627534/

Jim
 

Sushi

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What is confounding is that probably most ME/CFS patients have normal blood sugar levels unless that have concomitant type 2 diabetes.
I have always had normal blood sugar in a one sample tests. But, when doing a 3 hour glucose tolerance test, my blood sugar dropped to 40. I have only done that test once so not sure if it is still happening. I compensate by eating protein snacks frequently. I wonder how many of us would show this abnormality on a glucose tolerance test?
However, there might be a chance of tolerating a small amount of digestive enzymes taken either with meals (may already be doing this)
Yes, I think digestive enzymes are okay, just not nattokinase or lumbrokinase because of the other anti-coagulant I need to take.
 

place

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I love Lovenox
My brain fog goes away, but it’s expensive and doc don’t like to prescribe. I so so much better on this blood thinner. Don’t notice much with aspirin, other than busies.
 

Janet Dafoe

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@Janet Dafoe (Rose49) In Ron's bedside chat with Ben, he mentioned pilot trials. Are these certain to happen in 2018? We know suramin trial will happen but are there others to take place also?
Ron says that, in addition to the suramin trial, he wants to have one or two more small scale, pilot, trials next year. He's not sure what. He's going to look at the data and make a decision what might have a reasonable chance of benefitting people. He is currently collecting data on a number of possibilities. Trials are expensive and we have to be very careful to use our funds wisely.
 
SALT & BLOOD STICKINESS

In Dr. Davis's video, I found two things interesting from my experience with ME/CFS. The first is SALT - he described that the substrate reacts with changes in impedance first low (allowing in) and then increased impedance (restricting). As most of us know, POTS is a common finding in ME/CFS. I was diagnosed with this early on at The Cleveland Clinic by an autonomic heart specialist, Dr. Fenat Fouad. I had and have very low blood pressure and the only thing that worked was a very high salt diet - 5-10 grams a day. In fact, I would have tonic/clonic type muscle problems and only salt would help. In addition, if I put salt in a glass of water - I could NOT taste the salt - at all. So clearly, in my case and many of us with POTS or related low blood pressure issues salt assimilation is an issue.

In my research on salt, I noticed there were quite a few types of salt ion channelopathies (i.e.,diseases caused by disturbed function of ion channel subunits or the proteins that regulate them) in fact several are thought to be autoimmune. Channelopathies have been studied by several researchers in ME/CFS.

The second area of Dr Davis's discussion that caught my attention was his blood "stickiness" observation. I remember reading about Rouleaux formation (abnormal stacking or clumping of red blood cells) and that Earthing or Grounding reversed this phenomena in less than an hour. In addition it has been found to have a substantial anti-inflammatory impact. I am an advocate of Earthing as I have noticed a great deal of benefits and improvement in my sleep and general well being. So this may be, in part attributable, to reversing the Rouleaux formation in my blood.
 

wastwater

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Misfolded proteins are sticky
Think they are dismantled in the mitochondria so maybe this leads to energylessness
Do antibodies target mitochondria as well
Who knows
 
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mariovitali

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The sepsis theory could be true. My adult son with severe me/cfs says that when he eats and as the food moves thru his system, he feels something gets released and than the fibro pain, over sensitivities and more come out,
Or there may be the case that Toxic Bile Acids are causing these problems. A "Total Bile Acids" test -along with Fibroscan- should be performed to ME/CFS Patients in my opinion.
 

Neunistiva

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Ron says that, in addition to the suramin trial, he wants to have one or two more small scale, pilot, trials next year.
This is such wonderful news.

While it is encouraging to read about more and more researchers being involved in ME/CFS, and I follow all their work and updates with extreme gratitude, most others work only on figuring out the basics of ME/CFS and speak of timescales of half-a-decade and more. As far as I know Dr. Davis and his collaborators are the only ones looking for a cure in this way.

In order to keep hanging on we desperately need hope that there is at least some chance that we might be pulled out of this hell sooner.
 

neweimear

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This is such wonderful news.

While it is encouraging to read about more and more researchers being involved in ME/CFS, and I follow all their work and updates with extreme gratitude, most others work only on figuring out the basics of ME/CFS and speak of timescales of half-a-decade and more. As far as I know Dr. Davis and his collaborators are the only ones looking for a cure in this way.

In order to keep hanging on we desperately need hope that there is at least some chance that we might be pulled out of this hell sooner.
You are saying exactly what I want to say but more articulately!! Nice to hear my own thoughts echoed back. Hell is the word.