• 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

bel canto

bel canto

Senior Member
Messages
246
Did I understand correctly from Ron's talk that the metabolomics testing is not going to be offered to patients in the near future? I thought that the plan was to make it available to us as soon as possible. Maybe I misunderstood.
 
Tally

Tally

Senior Member
Messages
367
bel canto said:
Did I understand correctly from Ron's talk that the metabolomics testing is not going to be offered to patients in the near future? I thought that the plan was to make it available to us as soon as possible. Maybe I misunderstood.
Click to expand...

The test that Dr. Ron Davis was refering to is the one they are doing by measuring electrical impadence of a tiny amount of blood in a chip that has been newly designed.

Although it is a relatively new in the field of medicine, metabolomics tests are well established and exist in laboratories all over the world. They don't measure electrical impedence, they analyze all the matabolites in the blood. I believe Metabolon is doing metabolomics testing for OMF and that is a separate test from the one Dr. Davis was talking about in this video.
 
A

ash0787

Senior Member
Messages
308
Rose49 said:
Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.
Click to expand...

It seems to be that at this point we now have a very well defined problem, and until the offending molecules are identified its mainly going to be just standard lab work which could probably be done by normal chemistry graduates, with some creative guidance from expert professors, in that sense perhaps ron can start to relax a bit ?

I don't need an academic paper or even a video recording of the experiment, I am convinced now that its legit and reproducable etc, I will keep sending you money from my UK gov disability allowance ( so they will end up paying for me/cfs research even if its indirectly ).
 
Last edited:
londonpots

londonpots

Messages
1
Interesting! I'm wondering if it explains my histamine intolerance. Histidine is used in the Krebs Cycle, I read, but if that's blocked perhaps it all converts to histamine instead and just hangs around making me feel ghastly. Not a biologist, so may be deluded here.
 
A

arewenearlythereyet

Senior Member
Messages
1,478
ash0787 said:
It seems to be that at this point we now have a very well defined problem, and until the offending molecules are identified its mainly going to be just standard lab work which could probably be done by normal chemistry graduates, with some creative guidance from expert professors, in that sense perhaps ron can start to relax a bit ?

I don't need an academic paper or even a video recording of the experiment, I am convinced now that its legit and reproducable etc, I will keep sending you money from my UK gov disability allowance ( so they will end up paying for me/cfs research even if its indirectly ).
Click to expand...
I would just like to say reading through here that I agree with this sentiment, particularly the bit about Ron taking a breather while separation tests are run etc.

Its exciting to know that the investigation can now pick up pace with what I imagine will be some classic detective work to identify what lies in the serum. It's probably best not to oversimplify the scale and complexity of doing this though given all the "stuff" that ends up in our blood, (how many of us are experts in this field?) and not to forget that it might not just be one single thing in there. hopefully this will be something that existing science will be able to latch on to and identify a treatment for whatever is found.

I will be donating and have also decided to divert a set portion of my Jobseeker's Allowance once it comes through.
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Rose49 said:
You saw his face. He's tired and doing all he can.
Click to expand...

Yes, was actually quite worried about him and his ability or the need for him to carry on at this level of work. He looks so tired. What can be done so that he can rest more - surely this needs to be a priority, so that he can continue to help you care for Whitney?

As a parent myself I know we push ourselves beyond our limits all the time for our children, but if we push too much how can we then be there to look after them?

@Rose49 Just wanting you to know that as much as you and Ron want to find a cure for Whitney and care about all the people suffering in the world, we also care about you both.
 
U

UKmum

Messages
87
Rose49 said:
Thanks so much! Ron won't be taking a breather! He's heavily involved and it's complicated. He won't stop till it's figured out. No one else can do what he and his team are doing right now. This is new technology.
Click to expand...
Every morning I go and check this site just to see whether Ron has solved it yet. One morning I know its going to be so. Can't wait to hear that Whitney's making progress then I'll know there's hope for all. So grateful for all you are doing. If you are ever in the South West England having a well earned break- our house is your house. Its our son with ME's birthday today so we will be making a donation on his behalf.
 
Y

Yabisa

Messages
43
Rose49 said:
Thanks so much! Ron won't be taking a breather! He's heavily involved and it's complicated. He won't stop till it's figured out. No one else can do what he and his team are doing right now. This is new technology.
Click to expand...

We know, and I can understand what you say because I have sons and I'm the same way of been, but stress and fatigue are never good companions.
Take care all of you!
Lots of kisses

 
Last edited by a moderator:
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I am so excited about Ron`s fast track method, it`s the completely right thing to do in the current situation. Not to forget, also incredibly hyped about the chip technology!

It`s crazy that NIH don`t grasp that there`s no use in being bound to hypopheses without any well founded premise. That`s why Ron is famous, and other people work e.g. in NIH..

The slide with the metabolic pathways was crazy to see, it seems that a lot has gone haywire. It certainly feels that way.

What can it be..
 
TigerLilea

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
BruceInOz said:
I understand this sentiment but for the progress made to be of help to all of us will eventually require publication. If the preliminary results are published, others may be able and motivated to get involved and may have other ideas that lead to more progress. That's how science works. As you say, he's only one and he is elderly and mortal. The trailblazer needs to leave enough for others to follow.
I am not meaning to be critical of Ron. I am very thankful for his involvment and really feel for his situation. I just would love to see what he's finding published. It all comes down to money I guess.

ETA: crossposted with @Kati
Click to expand...
Why don't we let the man get on with his work as I'm sure he knows exactly what he is doing and what is the best approach to take. I doubt very much that Dr. Davis needs us telling him how to do his job. ;)
 
picante

picante

Senior Member
Messages
829
Location
Helena, MT USA
Wolfiness said:
I know we're all anxious and desperate but I think we can stop offering Dr. Davis entry-level advice. He knows the score.
Click to expand...

TigerLilea said:
Why don't we let the man get on with his work as I'm sure he knows exactly what he is doing and what is the best approach to take. I doubt very much that Dr. Davis needs us telling him how to do his job.
Click to expand...

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.
 
You must log in or register to reply here.