Stanford University ME/CFS research center gets $1.2M grant from OMF.

[Joel]

Got this email from OMF:

We are proud to announce funding for the ME/CFS Collaborative Research Center at Stanford University led by Ronald W. Davis, PhD, Director of our Scientific Advisory Board.

Dr. Davis has assembled a world-class team of scientists, many of whom have never before focused their expertise on ME/CFS, and has planned several innovative projects that will help us to understand the molecular basis of ME/CFS, develop better diagnostics, and discover new treatments. Given the number and quality of investigators that this grant would bring into the field, and the likelihood of groundbreaking discoveries coming from this research, OMF has decided to fund this highly promising proposal.

Although the National Institutes of Health decided against funding this plan as one of their Collaborative Research Centers, we believe this work is too important and too promising not to pursue. The opportunity to bring a scientific team of this caliber into the field of ME/CFS research is not one we are willing to miss, and we have heard from many of you who agree! That’s why we are funding the first year of this vital work with a $1.2 million grant that we have raised from our generous patient community.

We need your support for this amazing team to continue beyond year 1 to complete these projects. One year of funding is enough to make significant progress, but these ambitious projects will require multiple years to complete and publish. To support and maintain this groundbreaking research, please donate today.

The ME/CFS Collaborative Research Center at Stanford will work on three projects that are critical and fundamental to understanding this disease and developing diagnostics and treatments:

1. T cells and the molecular immunology of ME/CFS

Sequencing single T cells and discovering their targets

1. Extended big data study in families

Genome sequencing, gene expression, metabolomics, cytokines, clinical features, and more

1. Developing blood-based diagnostic and drug screening technology

Enabling fast, inexpensive diagnosis of ME/CFS and discovery of new treatments

To learn more about the scientific plan for these projects and the outstanding team that makes up the Collaborative Research Center, please visit our website.

Ron Davis remains one of the smartest researchers involved in ME/CFS in my view and he's assembled a lot of other top researchers at the ME/CFS center at Stanford.

 

[Kalliope]

Great to see that these projects can start up!

 

[Ron]

A couple comments.
I no longer see Dr. Kogelnik listed as being involved. I now see Dr. Kaufman's listed as part of the Scientific Team. Also Dr. Montoya is listed as part of some working group which I've not seen his name before.
Last, I noticed in this funding announcement that they list: "T cells and molecular immunology of ME/CFS" as one of the top priorities. I guess this is the Mark Davis research?
I thought Mark Davis was involved with Dr. Montoya on this?

 

[Joel]

A couple comments.
I no longer see Dr. Kogelnik listed as being involved. I now see Dr. Kaufman's listed as part of the Scientific Team. Also Dr. Montoya is listed as part of some working group which I've not seen his name before.
Last, I noticed in this funding announcement that they list: "T cells and molecular immunology of ME/CFS" as one of the top priorities. I guess this is the Mark Davis research?
I thought Mark Davis was involved with Dr. Montoya on this?

My understanding which may be out of date is that Montoya though at Stanford runs separate ME\CFS research to the ME/CFS center set up by Ron Davis. But there is some collaboration too. Not sure if the T cell stuff is led by Mark Davis or someone else/something different but I'd imagine he's involved given his field.

 

[Estherbot]

Full details here:

https://www.omf.ngo/collaborative-research-center-stanford/

One name conspicuously absent: Dr Jose Montoya...he wasn't at the Stanford Symposium in August either..What is going on?

 

[BurnA]

One name conspicuously absent: Dr Jose Montoya...he wasn't at the Stanford Symposium in August either..What is going on?

I had the impression Montoya was not involved with Ron Davis' research.
Montoya works in a different dept in Stanford and while I think he might have provided patients for research in the past I don't think he was directly involved with OMF / SGTC.

 

[Estherbot]

I had the impression Montoya was not involved with Ron Davis' research.
Montoya works in a different dept in Stanford and while I think he might have provided patients for research in the past I don't think he was directly involved with OMF / SGTC.

Sure, he works in a different department but apparently he was a rather put out at not being invited to the Stanford Symposium. It was him who got Mark David involved...


Rather odd not to pool expensive resources: staff & equipment...the Ron Davis lab was also heavily criticised in the NIH feedback...

 

[Andy]

Other members of CfS for ME/CFS include clinicians Lucinda Bateman (Bateman Horne Center), Anthony Komaroff (Harvard University), Susan Levine (New York City), Jose Montoya (Stanford University), Daniel Peterson (Sierra Internal Medicine), as well as laboratory-based investigators Oliver Fiehn (University of California, Davis), John Greally (Albert Einstein College of Medicine) and Mady Hornig (Columbia University).

https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative

 

[BurnA]

Sure, he works in a different department but apparently he was a rather put out at not being invited to the Stanford Symposium. It was him who got Mark David involved...


Rather odd not to pool expensive resources: staff & equipment...the Ron Davis lab was also heavily criticised in the NIH feedback...

I notice he is listed in the working group section on the website.

I don't know why Dr Davis did not invite him, but I don't think pooling resources has much to do with this study. Everything will come at a cost, I am surprised there are so many people listed, there certainly isn't enough money to pay for all them full time.

 

[Estherbot]

The working group is people who have offered their services not active participants.

Mark Davis works in a separate department to Ron Davis.

In his recent video, Ron Davis complained about being supplied with poor quality samples.

Montoya has published a access to the patients in his ME/CFS, rather odd not to use them.

The NIH also pointed out that Ron Davis has no track record of publication, where as Montoya's lab has published 2 major ones.

1 the Jarred Younger Leptin study
2 the Mark Davis cytokine paper.

It's all rather daft, that resources are not pulled considering the cost of equipment and staff.

Patients are the ones who suffer due to any clash of egos. *Sigh*

 

[Adrian]

The working group is people who have offered their services not active participants.

Mark Davis works in a separate department to Ron Davis.

In his recent video, Ron Davis complained about being supplied with poor quality samples.

Montoya has published a access to the patients in his ME/CFS, rather odd not to use them.

The NIH also pointed out that Ron Davis has no track record of publication, where as Montoya's lab has published 2 major ones.

1 the Jarred Younger Leptin study
2 the Mark Davis cytokine paper.

It's all rather daft, that resources are not pulled considering the cost of equipment and staff.

Patients are the ones who suffer due to any clash of egos. *Sigh*

Sometimes if people have competing theories and different directions it makes sense to keep them separate. Trying to force groups together can cause conflict. If there are two different bets at Stanford that seems like a good idea.

However it is a shame they don't share samples and other equipment

 

[Joel]

The working group is people who have offered their services not active participants.

Mark Davis works in a separate department to Ron Davis.

In his recent video, Ron Davis complained about being supplied with poor quality samples.

Montoya has published a access to the patients in his ME/CFS, rather odd not to use them.

The NIH also pointed out that Ron Davis has no track record of publication, where as Montoya's lab has published 2 major ones.

1 the Jarred Younger Leptin study
2 the Mark Davis cytokine paper.

It's all rather daft, that resources are not pulled considering the cost of equipment and staff.

Patients are the ones who suffer due to any clash of egos. *Sigh*

Do we know it's down to egos or is this just speculation? I don't know anything about it but it might be for all kinds of reasons I'd have thought: different ideas, focus, funding restrictions, goals etc. I personally don't mind having a few different groups working on different things, to me that increases our chances as its best not to have all our eggs in one basket, although I hope all groups communicate with each other and collaborate where it makes sense. Hopefully that's happening and as Montoya is listed in the working group (I'm not really clear what the working group is though) it does seem there is some collaboration going on.

 

[BurnA]

It's all rather daft, that resources are not pulled considering the cost of equipment and staff.

Patients are the ones who suffer due to any clash of egos. *Sigh*

I don't follow what you are saying.

I don't see anything daft.
Just because Montoya isn't an active member of Ron Davis' research group doesn't mean it's daft or we suffer.

The concept of sharing equipment also doesn't make sense, and wouldn't impact cost.
Someone has to pay for a test regardless of whose lab it is run in.

Regarding samples I think Ron Davis is the best person to know what samples are required and which ones are useful. He wants progress as fast as anyone so I doubt his ego is getting in the way of sharing samples if they could be useful.

 

[Alvin]

We really need a disease mechanism, it will help immensely in almost every area from smashing the GET/CBT house of cards to a diagnostic test for ME/CFS to research directions to vectors to test treatments against. The fact they are focusing on T cells and genetics suggests this is what they think is a big part part of the condition.

Do we know it's down to egos or is this just speculation? I don't know anything about it but it might be for all kinds of reasons I'd have thought: different ideas, focus, funding restrictions, goals etc. I personally don't mind having a few different groups working on different things, to me that increases our chances as its best not to have all our eggs in one basket, although I hope all groups communicate with each other and collaborate where it makes sense. Hopefully that's happening and as Montoya is listed in the working group (I'm not really clear what the working group is though) it does seem there is some collaboration going on.

I wonder if they chose to remain separate as a NIH funding tactic.