• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

user9876

Senior Member
Messages
4,556
No. The serum contains a LOT of things. Metabolites (small) and proteins and antibodies (big). And other stuff.

The fact it contains antibodies is interesting in that it could match the auto-immune theory from the Rituximab work. However, I don't think Ron's testing of Rituximab will work as it kills the b-cells to stop the antibodies being produced so is a much more complex process than will be picked up on the chip - as any auto-antibodies won't be destroyed.

What would be really interesting is to get together with Fluge and Mella and use the chip to test patients after Rituximab treatment to see if there are differences.
 

user9876

Senior Member
Messages
4,556
all blood serum contains antibodies. i do not think they are referring to anything me/cfs specific.

If there is a particular auto-antibodies that cause a switch in some the metabolic process within ME then these will be included in the blood serum so the mix of putting the serum onto healthy cells would be consistent with that - of course there will be many other possible explanations. Rituximab disturbs the antibody creation process so that eventually there are no plasma cells to produce them and from the limited trial evidence seems to help so is suggestive of some sort of anti-body process.
 

Cinders66

Senior Member
Messages
494
Is it thought that the signalling in the serum is a fault or protective? - Naviaux's research was presented in terms of a protective mechanism. Could blocking the shut down signal be harmful in actual humans?
 
Messages
38
Location
SE USA
I had this thought too. A burst of adrenaline makes my body work for a short period but makes me very ill later. And I wondered how he would be able to test or protect against this sort of thing.

I think a big part of the value of the test is providing a method to isolate what in the blood serum is causing the problem. Just isolating the problem to the serum seems like a big deal to me. Interesting and exciting for sure.
 

Barry53

Senior Member
Messages
2,391
Location
UK
Is it safe to assume at this point that they have ran serum/cells from other immune mediated diseases that feature fatigue as a symptom through the impedance assay and they look different than ME patients?
This is a question I emailed to MECFSResearchQuestions@gmail.com yesterday, albeit not with such technical aplomb.

Edit: I won't get to see my emails until this evening, being old fashioned and not getting them on my phone (I prefer it that way!).
 
Last edited:
Messages
65
Location
UK
I am so excited about this. But scared also, because feeling optimistic about there being treatment or a cure is a very hard thing to have if it turns out to be false. A little voice says 'what if this person is wrong, and the results are not what they think they are'. But mostly though, I'm beginning to hope that one day I'll be fixed.

I was so excited I phoned my dad at about midnight (curfew for phoning in the family is about 9pm these days). He didn't mind though, we need some hope as a family. And my carer got very little done today because I told them all about it too. I don't think I'm going to be able to shut up about it for days...

One thing that surprised me was that Ron I think said that about the graph with normal and me/cfs people with the microchip test, that normal people blue line stayed the same, but the red line all went up. Given there seems to be a view that there's different sorts of me/cfs - seems strange to me that all the me/cfs red line people reacted in the same way? Or maybe it's because the me/cfs people being tested are all severely affected progressive sorts? Or maybe there aren't different sorts at all.

For me though, the bottom line is that even if Ron and his team's research only helps Whitney get his life back, but is a dead end for everyone else, it's worth it. Even if I stay the same forever, knowing that one person is fixed would be enormous comfort. I'm hoping it will turn out wider than that, maybe as far as more than the people whose blood is being tested or even certain cohorts of us globally. But even one person, that's way more than we've had before.
 

Mohawk1995

Senior Member
Messages
287
Is it thought that the signalling in the serum is a fault or protective? - Naviaux's research was presented in terms of a protective mechanism. Could blocking the shut down signal be harmful in actual humans?

Maybe it is both protective and also a fault (when it goes too long or too strong). Also what is activating the signalling? Neuro-immune would be my theory. A central and thus systemic response. Neurophysiology designed to protect us that "over steps" its purpose and goes too far. If that is the case, I would think shutting it down would not be ideal but modulating it to respond in a more functional way would be ideal.

Is it safe to assume at this point that they have ran serum/cells from other immune mediated diseases that feature fatigue as a symptom through the impedance assay and they look different than ME patients?

As my Dad (an engineer) once said "It is never safe to assume". It would be interesting to see what other immune mediated disease states revealed in similar testing (MS, Fibromyalgia, Rheumatoid Arthritis, Polymyositis, etc...) It would also be interesting to look at serum in diseases thought to be unrelated to immune system (Chronic Pain, Migraines, PTSD, Reflux, Seizures, etc...). Might find more commonalities than we think to ME.
 
Last edited:
Messages
65
Location
UK
Transcribing a video is much more energy intensive than I had envisioned :ill: I have nevertheless finished.

I am going to forward the transcript to Pat and Grigor now. If anyone else wants a copy, let me know.

EDIT: I've just realised I can actually just upload it here. Anyone can share or use this document however they wish. You do not need to ask my permission.
Possibly a stupid question - is the transcript on Facebook anywhere? I'm in a couple of ME/CFS groups who have people who have trouble with videos. I'd like to be able to share it there.
 
Messages
65
Location
UK
Surely there is a rich business person out there who has a family member with CFS? Large donations would go very far. The problem is funding. Never give up.
I used to work in Financial Services in London, I'm making sure my friends are aware. You never know when employees are going to be asked for suggestions of charities/ community funding opportunities for big biz to tick their 'community caring' box as part of their corporate responsibilities.... So far it's gone to people in hedge fund, global insurance, global law and investment advisers. I have no shame so I specifically asked them to consider donating. :) I included the video and the transcript. I have no idea if any of them will, and if they do I'm pretty sure they won't tell me, (rightly so, giving should be private not boasted of), but I'm hopeful that some might.
 
Messages
65
Location
UK
I used to work in Financial Services in London, I'm making sure my friends are aware. You never know when employees are going to be asked for suggestions of charities/ community funding opportunities for big biz to tick their 'community caring' box as part of their corporate responsibilities.... So far it's gone to people in hedge fund, global insurance, global law and investment advisers. I have no shame so I specifically asked them to consider donating. :) I included the video and the transcript. I have no idea if any of them will, and if they do I'm pretty sure they won't tell me, (rightly so, giving should be private not boasted of), but I'm hopeful that some might.
Hmmm. I have a couple of hundred contacts on LinkedIn. If I can find somewhere online that's freely accessible with the transcript, that would make it easier to do a LinkedIn post - people often can skimread a document when they don't have time to watch a video. If anyone can tell me a place where the transcript is freely available online (not here where you need a login, or on FB where you also need a login, I'd be grateful. Maybe the OMF could attach it to the YouTube video?
 

keenly

Senior Member
Messages
814
Location
UK
Very exciting! I'm going to donate right now.

Any news on bitcoin donations, Ben?



I wondered that too. I suspect a few people are going to rush out and buy pyruvate and ATP.
They can not be patented.

That being said, the DELIVERY SYSTEM could be. The problem right now is ATP tablets are useless, and what is going the low ATP?
 

keenly

Senior Member
Messages
814
Location
UK
Pyruvate dehydrogenase and the citric acid cycle

http://watcut.uwaterloo.ca/webnotes/Metabolism/TCAcycle.html

Overview

  1. Pyruvate degradation occurs in the mitochondria
In the complete degradation of pyruvate, pyruvate dehydrogenase (PDH) and the citric acid cycle perform the oxidation of all substrate carbon to CO2. The hydrogen is retained in reduced form; it is subsequently oxidized in the respiratory chain.

5.1.1
Pyruvate degradation occurs in the mitochondria
Pyruvate is produced by glycolysis in the cytosol, while PDH and all subsequent degradative steps are located in the mitochondria. Therefore, pyruvate needs to be transported from the cytosol to the mitochondrial matrix.

The outer mitochondrial membrane contains porins, which are membrane proteins that form non-specific pores and allow free permeation of most small metabolites, including pyruvate. In contrast, the inner mitochondrial membrane is much more restrictive, and it is permeable to only those metabolites for which it contains specific carrier systems. The pyruvate carrier is an active transporter that co-transports pyruvate and a proton.18

Red blood cells and blood platelets lack mitochondria and accordingly cannot degrade pyruvate. These cells reduce pyruvate to lactate, which they then release into the bloodstream (see slide 3.4.2)....
 
Last edited by a moderator:

Cheesus

Senior Member
Messages
1,292
Location
UK
Possibly a stupid question - is the transcript on Facebook anywhere? I'm in a couple of ME/CFS groups who have people who have trouble with videos. I'd like to be able to share it there.

I'm not really sure. I don't belong to any Facebook ME groups. You are free to distribute it to whomever and however you like :)