Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

[perrier]

I'll answer this as soon as I can. He's with Whitney now, then I will be with Whitney, then somehow we have to eat, then Ron goes to bed and I'm up with Whitney, etc, and so it goes. In the morning he's gone before I wake up. Two ships in the night.

I'm very touched by what your family is going through. I think of you all every day and pray that there will be some answers soon. My daughter is severely ill, bed bound too. She also started having GI hemorhages. These, required multiple transfusions. Source of bleed determined in in the small bowel,but nothing more despite many tests scans scopes.She just came out of the hospital on Sunday with the 6 th bleed. They wanted to do exploratory surgery but we refused because she is so weak. She says she can't hang on anymore. She's getting weaker and weaker. We are in Canada and there aren't any resources here and I'm not sure what to do to get her some help. All I can do is give here a vitamin IV. But she needs more help.

 

[Janet Dafoe]

Thank you so much for clarifying the organizational structure, @Rose49.

A question: How does Ron's CFS Research Center at Stanford relate to José Montoya's ME/CFS research group at Stanford?

Again, many thanks to you, to Ron, to your daughter and to Linda T.
Love and thoughts for Whitney - he is in the thoughts of many, many ME patients and carers around the world. I will be making a new donation to OMF shortly. Let's solve this! Let's help the millions missing.

The CFS Research Center at Stanford (Ron Davis) and the Stanford CFS Initiative (Jose Montoya) are completely separate, independent organizations. Dr. Montoya is a physician that sees patients, and he elicits collaborations with physician/scientists and with research scientists at Stanford so those scientists can investigate various aspects of CFS, and Dr. Montoya provides the patient samples. Ron Davis's training is in biochemistry and genetics, he is a research scientist, not a doctor, and he is investigating the biochemical basis of ME/CFS and the genetic contributions to this disease. He has extensive experience in developing technologies and is developing new technologies for finding a diagnostic test, treatment, and cure for CFS. Dr. Davis has worked with Dr. Montoya using Davis's new technology to sequence the HLA region of patients' DNA from several hundred of Montoya's patients. He has also helped Dr. Montoya with statistical analysis of results on several projects. The CFS Research Center is where Davis does his science, but he plans and coordinates the grand End ME/CFS Project as Director of the Scientific Advisory Board of the OMF.

 

[perrier]

Thanks for all the info about the work of Prof. Davis. Much appreciated.

Might I ask, as a very desperate mother watching her daughter waste away-- a daughter who is pleading to be released from this daily suffering-- if the team prof. Davis is working with has some kind of time frame AT This Point about either a diagnostic test, or treatment or cure.

 

[Janet Dafoe]

Thanks for all the info about the work of Prof. Davis. Much appreciated.

Might I ask, as a very desperate mother watching her daughter waste away-- a daughter who is pleading to be released from this daily suffering-- if the team prof. Davis is working with has some kind of time frame AT This Point about either a diagnostic test, or treatment or cure.

They are extremely motivated, working really hard on it, and are very hopeful. A timeline is difficult. Hang in there! I am so sorry about your daughter! Tell her to hang in there! There is hope! Whitney is somehow hanging on! So amazing. So hard. We will get there!

 

[perrier]

They are extremely motivated, working really hard on it, and are very hopeful. A timeline is difficult. Hang in there! I am so sorry about your daughter! Tell her to hang in there! There is hope! Whitney is somehow hanging on! So amazing. So hard. We will get there!

Thanks Rose for your encouragement. We all need it with this terror. My concern is and has always been that AIDS got so much financing. I remember even in the high schools here they did fund raisers for AIDS. I'm concerned that your husband's team is not getting enough money. Folks should not be doing this work only benevolently. With AIDS there was big money, and researchers were paid. I suppose some contact with govt is useful. Here in Canada they just look at you as if you dropped from Saturn when you mention this illness. I know how motivated your team is. It's beyond compare. But money is urgently needed.

 

[Emma]

The CFS Research Center at Stanford (Ron Davis) and the Stanford CFS Initiative (Jose Montoya) are completely separate, independent organizations.[...]

Thank you so very much for your detailed and very helpful reply! I really appreciate you taking the time to answer my question, very kind of you

 

[Roy S]

@JaimeS
Would you be so kind as to start a new thread on the higher dose CoQ10 that you have been using?
This is a 2015 paper:
From Google search "Coenzyme Q10 multiple sclerosis"

http://www.ncbi.nlm.nih.gov/pubmed/25603363
　
"CONCLUSION:
Our study suggests that CoQ10 supplementation (500 mg/day) can improve fatigue and depression in patients with multiple sclerosis."
　
For what it's worth, after freebasing Q for two days now (Solgar 800 mg/day) I'm feeling better than I did before starting it.

At the 100-mg and 200-mg doses I noticed nothing at all, and considered CoQ-10 a waste of time and money, FWIW.

That was my experience too.

 

[Roy S]

This is a bio on Ron Davis that I read when he first came up on the radar screen. I'm from central Illinois too.
http://gruber.yale.edu/genetics/ronald-davis
　
Hang in there, Team Whitney.

 

[Nickster]

Also: OMF is run in Southern California by Linda Tannenbaum, who is CEO. OMI, where Andy Kogelnik's clinic is, is in Mountain View, CA. Ron Davis is a professor of genetics and biochemistry at Stanford and Director of the Stanford Genome Technology Center, and lives in Palo Alto and works at Stanford. Linda flew up from S Cal to attend the event on Wednesday. She is AWESOME. She is going to the London conference with Ron. They are a great team. And I help behind the scenes with ideas and strategies and writing, and whatever else I can do. Twitter. LOL. And Ashley, our daughter, Whitney's sister, does lots of advocacy and helps in lots of ways too. She manages the CFSResearch Center fb page and does what she can for fundraising too.

@Janet Dafoe (Rose49) @AshleyHalcyoneH Wow! Look at how far OMF and your family have come with coordinating a team of special scientists, concrete information/data, new inventions, fundraising and awareness that has been made in just over a years time! Boy, when you put your minds to something, THINGS happen. The above post was made just over a year ago. Things are moving exponentially! Yeah!