• 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.

OMF News February 2017

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
HOPE-MECFS-Facebook.jpg

OMF News February 2017


OMF IS FAST-TRACKING REVOLUTIONARY RESEARCH TO FIND ANSWERS! PLEASE
DONATE TODAY!

OMF Update
An Interview with OMF Scientific Advisory Board Director, Ronald W. Davis, PhD





We are resending to you the research update interview with Dr. Ron Davis recorded in his office at Stanford University. We apologize for any confusion. The link has been corrected.





Metabolomics & Genetics Study Update:
University of CA, Davis- New Collaboration

We are happy to announce that OMF and Scientific Advisory Board
member Dr. Robert Naviaux at University of California, San

Prof%20Oliver%20Fiehn%20photo.jpg
Diego (UCSD), are now collaborating with Director Oliver Fiehn, PhD and his team at the West Coast Metabolomics Center (WCMC), University of California, Davis (UCD).

Metabolomics Validation Study update from Dr. Naviaux:
"We have exceeded our original goal of 110 samples. We have collected 72 samples from females (36 CFS + 36 Controls), and 54 samples from males (28 CFS and 26 Controls). The total in-house is 126 samples. This is a 50% increase in the size of the study from our 84 samples in study #1."

The aims of the OMF Metabolomics Validation Study are:
1. Biological replication
2. Analytical replication
Update on Genetics component of the study from Dr. Davis:

Our lab has received immune cells from the patient samples of Dr. Naviaux’s metabolomics study. We will conduct extensive DNA sequence analyses looking for alterations in the sequence that indicate decreased functioning of genes that might correlate with the variations in the metabolic results. The goal is to determine if some of the differences in metabolites seen between patients can be explained by genetic differences. This analysis may explain some of the varied symptoms experienced by patients. It is possible that what appear to be subtypes of this disease are caused by genetic differences interacting with a basic metabolic process. There could be a fundamental mechanism common to all ME/CFS patients. We would like to find a treatment that impacts a fundamental mechanism.

From UCSD: The biological replication will come from the metabolomic analysis of the independent cohort of patients with ME/CFS using the mass spec methods developed at UCSD as in the first paper. All patients have been collected and testing has commenced. This will take 4-6 months (hopefully sooner).
From UCD: The analytical replication will come from a replicate analysis of the same samples using similar mass spectometry methods running the same tests by Dr. Oliver Fiehn’s team at UCD - OMF has funded this study as well and it will commence in March.
The results from UCD will be compared to the first and second metabolomics study and all should be completed by July. This testing will be blinded without reviewing results from Dr Naviaux's validation study until completed. Dr. Fiehn will receive de-identified samples and will be using the same methodology. Each test that is tested within Dr Naviaux's study will be tested in this study on a similar Mass Spectrometer platform.

About the UC Davis Team:
Director Oliver Fiehn and his team at the West Coast Metabolomics Center (WCMC) are committed to provide research and services conducting research in metabolomic method developments and biomedical applications. Professor Fiehn and his team pioneered developments and applications in metabolomics since 1998 with over 220 publications to date. Professor Fiehn specifically focuses on lipids and primary metabolism in cancer, cardiovascular diseases, diabetes, nutrition and metabolic syndrome projects. The WCMC is dedicated to provide further standardization and higher content in biochemical information through automatic annotation of metabolites and by using a range of chemical and biochemical database identifiers with every report we generate.


OMF Welcomes Jaime Seltzer
Jaime%20Seltzer.jpg
In the international ME/CFS community Jaime Seltzer is well-known for her stellar work at #MEACTION. Many may not know that Jaime is also a scientist and professor. Bringing together her skills and passions, Jaime is joining the OMF team for a three-month internship working with Dr. Davis' ME/CFS team at Stanford University. Jaime will be supporting critical research projects.

In addition, during her tenure Jaime will be helping with research communication and promotion. We are very excited to welcome Jaime to this new role.

OMF Maximizes Our Visit to the
Sundance Film Festival

OMF%20Sundance%20best%2001.jpg
OMF had the privilege of being Producer/Director Jennifer Brea's guest for the world premiere of her film, Unrest, and subsequent screenings at the Sundance Film Festival. Unrest's sold out audiences gave Jennifer Brea heartfelt standing ovations. The premiere was attended by Dr. Ron Davis, his daughter, Ashley Haugen, and CEO/President, Linda Tannenbaum.


Janet%20Dafoe%20at%20Sundance.jpg
Question and Answer sessions were held at the Premiere and after screening throughout the week with the crew and special guests including Dr. Ron Davis, Linda Tannenbaum, Dr. Janet Dafoe and Ashley Haugen. The film is truly beautiful and something that the public needs to see.





Maximizing our time in Utah, OMF arranged several meetings to talk about ME/CFS research. Dr. Ron Davis and Linda Tannenbaum met with Scientific Advisory Board members Mario Capecchi, PhD and Baldomero Olivera, PhD together with University of Utah's Kathleen Light, PhD and Alan Light, PhD. Dr. Davis and Linda also had the opportunity to meet with Lucinda Bateman, MD and Suzanne Vernon, PhD of the Bateman Horne Center. Finding answers to help patients is at the forefront of everything we do every day.







Open Medicine Foundation
Tax ID: 26-4712664

Our Mission:
A Word from our CEO/President:

As you read above, OMF's research is making great strides. We are moving forward in identifying potential biomarkers, understanding the mechanisms of ME/CFS and focusing on finding effective treatments and a cure.
From our current major studies we are learning about critical opportunities that need further exploration to find answers.

In order for OMF to move quickly with these investigations, we need the support of the global ME/CFS community to fund new studies. Please consider making a meaningful donation to support research. Every gift, of every size, will help to move us closer to answers.
Thank you being our partner in finding answers.


Linda%20pic.jpg

With hope, Linda
Linda Tannenbaum, CEO/President
Open Medicine Foundation
www.openmedicinefoundation.org
Linda@OpenMedicineFoundation.org
Fast-tracking revolutionary research for ME/CFS
and related chronic complex diseases


Donate Now

to join the Team of HOPE!

Turn Your Online Shopping Into Donations for Research.

Donate your old car, boat or plane and turn it into $$ to support research.
(Available in the US only.)

We invite the patient community to get involved by sharing with friends and family on Social Media.

Like us on Facebook
Follow us on Twitter
Please visit our website at www.openmedicinefoundation.org
Donate to End ME/CFS
 
Last edited:

Hajnalka

Senior Member
Messages
910
Location
Germany
Congratulations, @JaimeS, this is so exciting!!! :rocket:

If that's not too nosy, I'd love to know, how the OMF handles having interns or employees with ME (as a role model for other employers). Is it possible to somehow adapt the working hours to fluctuating health levels? Again, just if this is not too private. Thanks!
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Is it possible to somehow adapt the working hours to fluctuating health levels? Again, just if this is not too private. Thanks!

It's not too private!

My work hours have a big gap in the middle to accommodate my 'down' hours of 2pm - 4pm -- and to let my brain rest a bit before re-engaging. If I need anything like to sit down or to cease the conversation to go eat something, everyone has been really awesome about it. So far so good -- the only problem so far is that it's SO TEMPTING to keep going past my limits because being here is the absolute best!
 

Daisymay

Senior Member
Messages
754
It's not too private!

My work hours have a big gap in the middle to accommodate my 'down' hours of 2pm - 4pm -- and to let my brain rest a bit before re-engaging. If I need anything like to sit down or to cease the conversation to go eat something, everyone has been really awesome about it. So far so good -- the only problem so far is that it's SO TEMPTING to keep going past my limits because being here is the absolute best!

Warmest congrats JaimeS I hope it all works out really well for you! It must be SUCH an amazing team to work with. I always find Ron Davis talks so inspiring, just how science should be done and such humanity.

ME research seems to exemplify the very worst and the very best of science. And the very best will win out!

And thanks Ben for posting.

Just donated.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
It must be SUCH an amazing team to work with. I always find Ron Davis talks so inspiring, just how science should be done and such humanity.

ME research seems to exemplify the very worst and the very best of science. And the very best will win out!

Bless you, YES.

Honestly, if I didn't have a very full plate rn, I would be writing a blog gushing about this position RIGHT THIS MOMENT. As it is, I'm taking some quiet time here with you all before launching into the training modules so I can do lab work. :)
 

Daisymay

Senior Member
Messages
754
Bless you, YES.

Honestly, if I didn't have a very full plate rn, I would be writing a blog gushing about this position RIGHT THIS MOMENT. As it is, I'm taking some quiet time here with you all before launching into the training modules so I can do lab work. :)

The gushing would be totally understandable!

Please pass on my thanks to the WHOLE team for all their work. It always sounds as if they go way beyond the normal bounds, working long hours and putting so much into trying to solve what's going on in ME. It's very much appreciated in terms of the work and also that they care x