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

[Janet Dafoe]

I agree with this sentiment, but most of the back-and-forth exchange of views here is not directed at Dr. Davis. It's for our benefit and understanding.

@Rose49, I suspect you're highly skilled at sorting out the stuff he might want to hear about. And I'm so grateful for your presence here on this discussion. Your answers to questions have really helped us to keep from getting sidetracked by too much speculation.

Thanks. Yes, he knows what to do. But on the other hand, he is really open-minded and has me read a lot of the comments to him. He says, "You never know when some idea might be something I didn't know or hadn't thought of!" And I've seen him look things up from what people have said. Or read an article sent our way that he hadn't seen.

About dilution, he said, yes, they are planning to do that, but it can distort things because everything else in the serum is getting diluted too and you don't know what effect that has. So he's looking by other methods too. One is something about binding. Haha. I don't know much about that. And other things too.

 

[Janet Dafoe]

How can it be the ultimate cause? It doesn't just happen spontaneously. Something has to cause the mitochondrial dysfunction.

Ron doesn't think it's mitochondria dysfunction. He thinks the mitochondria work just fine but aren't getting what they need and/or are getting a bad signal.

 

[antherder]

But on the other hand, he is really open-minded and has me read a lot of the comments to him. He says, "You never know when some idea might be something I didn't know or hadn't thought of!" And I've seen him look things up from what people have said. Or read an article sent our way that he hadn't seen.

So incredibly refreshing to hear that. If only our doctors had the same attitude.

 

[Barry53]

Yes, he knows what to do. But on the other hand, he is really open-minded and has me read a lot of the comments to him. He says, "You never know when some idea might be something I didn't know or hadn't thought of!" And I've seen him look things up from what people have said. Or read an article sent our way that he hadn't seen.

That has to be the sign of a truly great scientist - person in fact! No arrogance, just a healthy recognition that despite who he is, and his capabilities, no one is an island, and useful input could spark from any quarter. If the rest of Dr. Davis' highly talented team have that kind of attitude, then I would say the chances must be very positive they will crack this problem.

 

[Barry53]

Ron doesn't think it's mitochondria dysfunction. He thinks the mitochondria work just fine but aren't getting what they need and/or are getting a bad signal.

Like a car engine that is working fine in itself, but a problem with its fuel supply or quality of its fuel? Or maybe with its throttle control?

 

[gregh286]

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Like a car engine that is working fine in itself, but a problem with its fuel supply or quality of its fuel? Or maybe with its throttle control?

More like gearbox issue. Stuck in first.....second...broken gearbox linkage but engine running sweet. Can't get upto 5/6 gear.

Myhill used this comparison when she referred to the adrenal glands.

Throttle she suggests was thyroid gland.

 

[Barry53]

O

More like gearbox issue. Stuck in first.....second...broken gearbox linkage but engine running sweet. Can't get upto 5/6 gear.

Myhill used this comparison when she referred to the adrenal glands.

But that would suggest energy conversion (chemical to mechanical) is working fine, and that instead the problem is further "downstream" - ineffectually utilising the mechanical energy that has been made available. Not sure it that is really the case.

 

[Solstice]

I wish I could "like" this 100x!
Whitney is in hospital now (see Whitney Updates" thread) getting j tube replaced. I've been educating all the nurses and docs I can corner. They are really interested. I told them about the metabolites and NK cell stuff and the new research. They really took it in and exclaimed that they'd never learned about it in nursing/med school. Good opportunity. This hospital unit is great. El Camino Hispital, Unit 2B, "Short Stay".

Hehehe, I just like the image of you scurrying down the hallways, pouncing on doctors and hitting them over the head with knowledge.

 

[ash0787]

well 'binding' would be the concept of introducing chemicals which 'bind' to certain types of molecules and render them useless, but it could also be an idea which I had which would be to expose the fresh serum to some sort of 'dead' cells or artificially created substitutes like just the cell membrane somehow grown in a lab and then the 'intelligent / active' components of the serum such as antibodies will latch onto those fake targets, you then filter out those mechanically and place the rest of the serum with the live cells like normal, leaving you with stuff that interacts in a more passive way ( simple example heavy metals ).

 

[Barry53]

Throttle she suggests was thyroid gland.

Regarding your edit. Throttle was just an illustration. There must be various signalling/event inputs into the body's energy conversion system, and presumably if any them go awry then the energy conversion could get misled. If it turns out to be a signalling issue.

And Dr. Myhill does refer to mitochondria as like little engines.

 

[trishrhymes]

Ron doesn't think it's mitochondria dysfunction. He thinks the mitochondria work just fine but aren't getting what they need and/or are getting a bad signal.

That's fascinating. I've just been watching Dr Light's latest video on his research, and he seems to be finding acquired mitochondrial DNA mutations that correlate with having ME and/or FM and that influence various stages of mitochondrial energy production. He tied this in to autoantibodies too. I wonder what Ron thinks about this. I'm no expert, so might have misunderstood.

I'm not asking for a detailed response, I don't want to put an added burden on Ron, he's doing such wonderful work. Just wanted to flag it up for anyone who's interested.

 

[slysaint]

scientific dummy (only got o'level biology) questions coming up: is 'serum' the same as plasma? and could whatever is going wrong originate in the lymphatic system (where the B and T cells lurk; have just watched a little video on the subject lymphatic systems role in immunity).
sorry if these are daft questions
be gentle with me.

 

[Barry53]

As I read in PR about the research going on into ME/CFS, it occurs to me there is probably one thing above all other that attracts truly great scientists (i.e. the best in their field, not just the also-rans) to a particular area of research - the sheer challenge of it. Cannot help feeling that we are in the midst of that really taking off at this time.

 

[Janet Dafoe]

As I read in PR about the research going on into ME/CFS, it occurs to me there is probably one thing above all other that attracts truly great scientists (i.e. the best in their field, not just the also-rans) to a particular area of research - the sheer challenge of it. Cannot help feeling that we are in the midst of that really taking off at this time.

Absolutely right! That's how Ron presents it in talks to his colleagues. And the suffering.

 

[Valentijn]

How can it be the ultimate cause? It doesn't just happen spontaneously. Something has to cause the mitochondrial dysfunction.

In the case of mitochondrial mutations, those mutations are typically present since birth, as are other healthy non-mutated mitochondria. But the mutated mitochondria may not have a noticeable impact until they're prevalent enough, typically over 50% for that type of cell (eg, muscles). So it's a somewhat gradual process, until the tipping point is reached. Accordingly, the change might look sudden.

But infections can also trigger flares, relapses, or progression of mitochondrial disease.

 

[DeceptivelySlow]

The dysautonomia/POTS/syncope patient groups and researchers have known about autoantibody involvement since around 2014 when Dr Kem from Oklahoma found extra autoantibodies in his MG patients and published about it. He reached out to the Vanderbilt autonomic research facility, did a small blinded study and proved his findings with 100% accuracy in their patients.

These antibodies modulate the way the adrenal receptors function. This is why we are having what seems like 'stress' and 'anxiety' symptoms.

Dr Kem presented at 2016 Dysautonomia conference. It was a really interesting presentation. He was able to induce autonomic symptoms in rabbit models, so he is on to something too.

I think this very interesting. Based on personal experience and extraordinarily limited knowledge, I have been suspicious that there is some type of dysfunction in noradrenergic modulation of the immune system playing a role in CFS/ME. This is a quote from a conclusion of an OLD study: "In sum, our studies indicate that intact noradrenergic innervation is required for normal immune function. Sympathetic neural influence, via norepinephrine release, may be exerted at the cellular (activation, proliferation, secretion of products) as well as the physiologic (antigen localization, lymphocyte migration) levels." (https://www.ncbi.nlm.nih.gov/pubmed/2819949)

Remaining million dollar questions: what is in the serum causing the problem? how did it get there?

 

[lauluce]

I think this very interesting. Based on personal experience and extraordinarily limited knowledge, I have been suspicious that there is some type of dysfunction in noradrenergic modulation of the immune system playing a role in CFS/ME. This is a quote from a conclusion of an OLD study: "In sum, our studies indicate that intact noradrenergic innervation is required for normal immune function. Sympathetic neural influence, via norepinephrine release, may be exerted at the cellular (activation, proliferation, secretion of products) as well as the physiologic (antigen localization, lymphocyte migration) levels." (https://www.ncbi.nlm.nih.gov/pubmed/2819949)

Remaining million dollar questions: what is in the serum causing the problem? how and why did what ever it is get there?

all I can say is that I have POTS on top of ME and surely some sort of other disautonomy related symptoms, such as having all sort of symptoms upon waking up, which vary with the length of sleep (the symptoms are milder if I sleep less of one our or more than 7!)

 

[Belbyr]

all I can say is that I have POTS on top of ME and surely some sort of other disautonomy related symptoms, such as having all sort of symptoms upon waking up, which vary with the length of sleep (the symptoms are milder if I sleep less of one our or more than 7!)

I could be wrong but I think dysautonomia and CFS are one in the same. Some people present bigger pulse and BP changes on a tilt table than others. Just like some people with CFS are bed bound and some are able to hold a job.

I walked around for 10 years with docs telling me I had CFS, then last year found POTS. Sure enough 9 years ago I failed an ANSAR test but doctors never mentioned it. I never really complained of dizziness or felt my heart racing. Apparently no one picked up on it including myself. It was Dr Koch at Wake Forest (a motility GI doctor) that found it.

 

[Louie]

Donated 20% of my gross monthly income. Give till it hurts! Ron says they can make this go FASTER if they have money to hire more people. There has never been a better time or place to donate to ME research.

 

[Binkie4]

scientific dummy (only got o'level biology) questions coming up: is 'serum' the same as plasma? and could whatever is going wrong originate in the lymphatic system (where the B and T cells lurk; have just watched a little video on the subject lymphatic systems role in immunity).
sorry if these are daft questions
be gentle with me.

@ slysaint

I am very interested in your question and wonder of you have a link to the video you watched. I was diagnosed with ME in 2008, and now also have a diagnosis of lymphedema which seems to have developed since the ME, so I have been wondering if there is any link. Lymphedema is another orphan specialism in the UK. Weird because the Professor who diagnosed me said there is no such thing as ME, so is unlikely to be helpful with my question.

Anyone else any knowledge too?