Dr. Ron Davis Hosts A Bedside Chat with OMF Correspondent Ben H

[Ben H]

Hi guys,

Here is the latest chat I did with Ron. Hope you enjoy it. We ran out of time but in Part 2 we will be answering community questions.

Please note that even though Triple Giving Tuesday was mentioned in the video, Triple Giving Tuesday has now finished so donations are no longer tripled. However every single donation helps out and it's absolutely critical in maintaining and moving research forward.

Dr. Ron Davis Hosts A Bedside Chat with OMF Correspondent Ben H

OMF Correspondent Ben H sits down, bedside, with Dr. Ron Davis over Skype to talk about the latest in research at the OMF-funded ME/CFS Stanford Collaborative Research Center and the collaboration between all three OMF-funded Collaborative Research Centers.
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Click here to watch Ron and Ben's "Bedside Chat"

During their conversation Ron and Ben also talked about Triple Giving Tuesday OMF. Even though Triple Giving Tuesday is over, we want you to know that donations year-round keep this critical research moving forward.
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Support research to end ME/CFS



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[AdventurerSarah]

Can anyone provide a quick summary of new developments? I don't have the energy to watch the whole thing right now.

 

[Belbyr]

Can anyone provide a quick summary of new developments? I don't have the energy to watch the whole thing right now.

No big news, all the same topics if you've followed any other videos over the past couple years.

 

[AdventurerSarah]

No big news, all the same topics if you've followed any other videos over the past couple years.

Thank you! I watched the symposium videos from September, so I'm caught up as far as a few months ago. That's too bad there's no major news though.

 

[Belbyr]

Yes it stinks because in my opinion there are so many things to look at/for...

My 2 take aways from the last couple years is it seems across the board the autonomic system is affected in a big way.

The other is there seems to be a brain inflammation going on across the board too.

 

[Ben H]

No big news, all the same topics if you've followed any other videos over the past couple years.

Yes it stinks because in my opinion there are so many things to look at/for...

My 2 take aways from the last couple years is it seems across the board the autonomic system is affected in a big way.

The other is there seems to be a brain inflammation going on across the board too.

I don't know if you're just trolling or genuinely that's all you picked up @Belbyr . Ron elucidates on a range of things that have been talked about before (which is 'new stuff'), there can't be a massive breakthrough every other month, the Symposium was in September and this was filmed in November, and Ron explains and expands on what has happened since then. There is also a part 2 coming. Have you read the diversity of research OMF are funding? I don't think you'd say some of those comments if you had-such as "Yes it stinks because in my opinion there are so many things to look at/for...". What do you want looked at? I probably shouldn't engage in this as it's surely futile, but you're giving out your own opinion as fact which is very misleading.


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[Belbyr]

Sarah asked for a quick summary and I felt like this video was a revisit of what we saw from the meetings earlier this year (OMF synopsis meeting and NIH meeting).

I’m expressing the same frustration that I felt was being channeled in the video. We all know funding is frustrating, NIH has been frustrating, studies in the past have now been reversed with newer/conflicting findings which is also frustrating. That is what I took from the video.

I’m glad the pursuit goes on but I didn’t feel ‘encouraged’ watching it.

My statement that ‘this stinks’ is me saying this stinks for all of us that what we deal with is so complex. It’s a statement of my sympathy for you, Dr Davis, and really everyone suffering or watching someone suffer with this.

 

[Empi]

Is there a metabolic trap update?

 

[Belbyr]

Is there a metabolic trap update?

Around the 28min mark he discusses pathways briefly but alludes to it being a big undertaking.

 

[Ben H]

Sarah asked for a quick summary and I felt like this video was a revisit of what we saw from the meetings earlier this year (OMF synopsis meeting and NIH meeting).

I’m expressing the same frustration that I felt was being channeled in the video. We all know funding is frustrating, NIH has been frustrating, studies in the past have now been reversed with newer/conflicting findings which is also frustrating. That is what I took from the video.

I’m glad the pursuit goes on but I didn’t feel ‘encouraged’ watching it.

My statement that ‘this stinks’ is me saying this stinks for all of us that what we deal with is so complex. It’s a statement of my sympathy for you, Dr Davis, and really everyone suffering or watching someone suffer with this.

I realise Sarah asked for a quick summary, but instead of saying someone like ' In my opinion no big news' you used absolutes 'no big news' , 'all the same topics' etc which is just your opinion. If people have followed the recent Symposium there is a lot of familiar stuff in there-naturally- and the interview leads on from there. It's just an informal chat, unplanned to a large degree (as it has to be) and in my opinion I'd rather Dr Davis pointing out NIH being frustrating so people understand why donating is so important. I'm genuinely really sorry you're frustrated Belbyr. I am too. But if there is any direction to point that frustration at its NIH or NICE and advocating which may change that.

Points that I believe we're new/expanding were:

-New collaboration with neurologist at Stanford with experience on blood/plasma factors and how they affect the brain

- Explanation of why there may be differences/some contradictions-the phosphate buffered saline indication

- People using the Seahorse instrument used buffer which may account for different findings, the nanoneedle doesn't (that's not to say the Seahorse isn't an amazing tool).

- Why the experiment to find 'what's in the blood' is taking a longer time-only being able to do two samples at a time, and how that affects with fractioning.

- Setting up to do specific RNA analysis for viruses

- A bit more explanation and wanting to do a collaboration regarding of Indoleproprionic acid, although some of this was mentioned in the Symposium.

- Discussion on CCI and Ron's thoughts on this.

- Thinking of equipping a mobile van for patients to make sampling easier and more accessible.

- Doing broad search for Trypanosomes.

- Brief discussion when I bring up Coxsackie where Ron talks about how RNA viruses area little more complicated.

- Mold and how Ron would like an expert in that area rather than reinventing the wheel so to speak.



So while it's nothing groundbreaking, it is new stuff even if some of that is building on established ideas and as importantly in my opinion, it's Ron's thoughts and opinions on things he doesn't always get a chance to give. The whole point of these chats are that they are informal, always transparent, and mention both the big and little things-even if that may be disappointing to you.


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[ljimbo423]

Thank you Ben for all the time and effort you put into these chats with Ron, among other posts that help keep us updated.

New collaboration with neurologist at Stanford with experience on blood/plasma factors and how they affect the brain

This, I feel, is very exciting. I feel very strongly that my most debilitating symptoms are from low grade neuroinflammation and the more people we have on this the better.

My feeling is whatever that "something in the blood" is, is what's causing the mitochondrial dysfunction, the neuroinflammation and most if not all symptoms.

If they can find what that is, it could very well lead them to the root cause of ME/CFS and open all kinds of doors for treatment and full recoveries or full remissions.

 

[Ben H]

Thank you Ben for all the time and effort you put into these chats with Ron, among other posts that help keep us updated.



This, I feel, is very exciting. I feel very strongly that my most debilitating symptoms are from low grade neuroinflammation and the more people we have on this the better.

My feeling is whatever that "something in the blood" is, is what's causing the mitochondrial dysfunction, the neuroinflammation and most if not all symptoms.

If they can find what that is, it could very well lead them to the root cause of ME/CFS and open all kinds of doors for treatment and full recoveries or full remissions.

Thanks @ljimbo423 .

I agree-I'm really excited about this collaboration too. I agree, feeling that neuroinflammation plays a large part, there's a fair amount of -preliminary- data out there supports this now (Shungu, Younger etc). We need much more work on this though which is why it's such a good thing. There's also Mike Van Elzakker at Harvard which is really great.

And yes, the sooner they find this molecule(s) in the blood, the better (providing the nanoneedle is diagnostic). It's why I asked the question because it sounds so simple, everyone wants to know why it's not been found yet. The reality being, as in the talk, that it's actually rather complex for multiple reasons.


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[Hopeful1976]

Thank you Ben for all the time and effort you put into these chats with Ron, among other posts that help keep us updated.



This, I feel, is very exciting. I feel very strongly that my most debilitating symptoms are from low grade neuroinflammation and the more people we have on this the better.

My feeling is whatever that "something in the blood" is, is what's causing the mitochondrial dysfunction, the neuroinflammation and most if not all symptoms.

If they can find what that is, it could very well lead them to the root cause of ME/CFS and open all kinds of doors for treatment and full recoveries or full remissions.

I think the same as you, I really believe that whatever is in the blood is a major player in this disease. I heard Ben try to get from Ron why its not so simple to look for, when it concept it seems to simple. Im afraid I didn't understand Ron's answer...

 

[Hopeful1976]

@Ben H Do you think a breakthrough will come for us? You have more to do with the OMF that is many of us. I'm seriously becoming so desperate. I feel as though I've been waiting and waiting for the last 4 years, since the 'something in the blood' first came out. As you said in the chat, it seems as though the solution to finding what that something is would be simple; yet 4 years have passed! I just dont understand this at all.... honestly, I don't get why nothing has happened to find it. It is this massive time delay, over something so apparently simple, that crushes my hope and belief that I will ever be well.

 

[Ben H]

@Ben H Do you think a breakthrough will come for us? You have more to do with the OMF that is many of us. I'm seriously becoming so desperate. I feel as though I've been waiting and waiting for the last 4 years, since the 'something in the blood' first came out. As you said in the chat, it seems as though the solution to finding what that something is would be simple; yet 4 years have passed! I just dont understand this at all.... honestly, I don't get why nothing has happened to find it. It is this massive time delay, over something so apparently simple, that crushes my hope and belief that I will ever be well.

I truly believe a breakthrough(s) will come for us @Hopeful1976 . When it will happen I am not sure but there is so much going on, with so much collaboration that it is inevitable, in my opinion. Here is a link to the ongoing OMF-funded research. As you can see, it's very, very broad. Where the breakthrough(s) will come from I don't know, but again I truly believe they will-I say this in absolute honesty-not based on blind-hope.

The recent talk, if you are able to watch or listen is hopeful for finding what is in the blood. One of the engineers has made a $200 dollar preliminary device which is magnitudes (100x IIRC) more effective than the current $30,000 dollar device at Stanford. The issue with the blood is fractionating the plasma and putting the various proteins (probably separately and in combination) etc through the nanoneedle and seeing the impedance response. A lot of the time, the technology simply isn't there to do what needs to be done and thus has to be made from scratch.

If you haven't watched or listened to Ron's talk in New York it's available here.

I can assure you I'm just as desperate as everyone for this, just as frustrated with how long things take and how much I've personally lost, particularly over the last 3 1/2 years. At the end of the day, I'm just a severely ill patient, volunteering for OMF, clinging on each day as we all are.


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[Hopeful1976]

I truly believe a breakthrough(s) will come for us @Hopeful1976 . When it will happen I am not sure but there is so much going on, with so much collaboration that it is inevitable, in my opinion. Here is a link to the ongoing OMF-funded research. As you can see, it's very, very broad. Where the breakthrough(s) will come from I don't know, but again I truly believe they will-I say this in absolute honesty-not based on blind-hope.

The recent talk, if you are able to watch or listen is hopeful for finding what is in the blood. One of the engineers has made a $200 dollar preliminary device which is magnitudes (100x IIRC) more effective than the current $30,000 dollar device at Stanford. The issue with the blood is fractionating the plasma and putting the various proteins (probably separately and in combination) etc through the nanoneedle and seeing the impedance response. A lot of the time, the technology simply isn't there to do what needs to be done and thus has to be made from scratch.

If you haven't watched or listened to Ron's talk in New York it's available here.

I can assure you I'm just as desperate as everyone for this, just as frustrated with how long things take and how much I've personally lost, particularly over the last 3 1/2 years. At the end of the day, I'm just a severely ill patient, volunteering for OMF, clinging on each day as we all are.


B

Thanks so much for your response. I really value your opinion. I'm in the UK also and so cling so desperately to the USA and OMF as our country has been so awful to us. I keep up to date with all Rons talks and symposiums - I just want a breakthrough so so badly, like we all do, and so feel scared and hopeless at times. Thanks for being such a great voice, V.

 

[Ben H]

Thanks so much for your response. I really value your opinion. I'm in the UK also and so cling so desperately to the USA and OMF as our country has been so awful to us. I keep up to date with all Rons talks and symposiums - I just want a breakthrough so so badly, like we all do, and so feel scared and hopeless at times. Thanks for being such a great voice, V.

You're very welcome @Hopeful1976 . Yes, I really understand advocating for a US charity rather than a UK one-its feels...odd sometimes. But there is some awesome work being done in this country, by Karl Morten, Julia Newton, the MECFS Biobank team etc, so there is hope there. Then you have Fluge and Mella in Norway etc. It's just the political agenda over here which is so, so oppressive, so I totally understand.


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[jesse's mom]

I am happy to know what is going on! Thanks for all you do @Ben H

 

[bread.]

@Ben H

Hi Ben,

thank you so much!

I only have one question to Dr. Davis, maybe dou could ask him that:

Why is Plasma Exchange not working? Why is it not tried more often?

ty!

 

[Possibly James May]

@Ben H, is there an ETA for part 2?