• 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 (FM), 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.

ME/CFS Collaborative Research Centers & Data Management Center Announcements

Janet Dafoe

Board Member
Messages
867
Hi adreno - just for clarification, the OMI is the Open Medicine Institute, headed by Dr Andy Kogelnik. The OMF is the Open Medicine Foundation, led by Linda Tannenbaum and with Dr Ron Davis as the head of its Scientific Advisory Board. The OMF doesn't do research: it raises money for research, specifically the End ME/CFS Project.

So we should be seeking for neither the OMI nor the OMF to be funded by the NIH - rather, we should be looking for Ron Davis's group to be funded directly.

Have I got that right, @Janet Dafoe (Rose49)?
Yes. His grants go out with himself as Primary Investigator with Stanford as the Institution. In the Collaborative Center Grant, they required or encouraged to work with an NGO and to have a substantial community outreach program. OMF was part of those in that grant. Ron was still PI.

With respect to reviewers, Ron isn't positive about exactly how this one worked, but there were about 20 reviewers. Each had a few (3?) (the head of the study section gets to decide how to run it) who have to read the entire grant and score it. All the others get a copy of the grant and may or may not read the whole thing and can make comments. Keep in mind: he's been on LOTS of study sections and this is generally how it works, but it's up to the head of the committee the exact methods. But yes, it's not the whole group doing the heavy lifting on any one grant. It's a subset, a small subset, usually. And usually one of them gathers all the info and puts together the main review, so that person has a lot of leeway. I repeat, he does not know for sure EXACTLY how this one worked.

Also, grants are confidential. Scientists put their ideas and plans into them. They aren't made public, and reviewers are supposed to keep the contents confidential. The ones that are awarded can then be made public.
 
Last edited:

Wally

Senior Member
Messages
1,167
@AndyPR,

As I said in my earlier post (Reply No. 238). If you want a thread to be more limited than the broad title you gave this thread, then it would seem that you need to start a new more specific thread that clearly states the parameters that you would like the discussions to be limited to. In my opinion the discussions that have already occurred under this thread directly relate to these announcements. These are funding and award announcements and it is a natural flow from such announcements to discuss the following:

1) who received and did not receive these awards,
2) what specific projects were funded and what projects were not,
3) whether a Member likes or dislikes the types of projects funded and/or the amount of funding awarded to these types of ME/CFS research projects,
4) information on the criteria used to award or reject a particular researcher and their proposal, and
5) information from any of the researchers on the reasons they believe their proposal was accepted or rejected, and
6) information on where a Member can look for information and tools to express their opinion about these announcements outside of the Forum. Note - not every Member on this Forum may understand the different ways in the U.S., where you can go about expressing your opinions to the government and/or the Public. So initial discussion on how to take an advocacy action related to these announcements could also come within this general thread.)

If you want to recommend that this thread be divided up into several more specific threads about these announcements, then it is my understanding that such a request would be made to a Forum moderator for their review. Otherwise, it may come across to other Members as if you are trying to censor discussion that is already ongoing, without formally asking for the thread to be reviewed by a Forum moderator. (Unless of course, I am mistaken and you are speaking to the Forum Members in an official role as a moderator?)

I do understand your frustration, if you thought you had started a thread that was limited in scope. Unfortunately the wording of the title and your first post did not make your intention to limit the scope of this discussion clear or perhaps another way to say this is that it could be left open to interpretation as to how others might view the intended scope of this thread. P.S. If you do start a new thread, you could also edit your first post in this thread to note the other thread(s) where a more specific discussion of a particular award(s) will be discussed.
 

greeneagledown

Senior Member
Messages
213
Respectfully, I'll remind you that the title of the thread is "ME/CFS Collaborative Research Centers & Data Management Center Announcements". It's not "Ron's failed bid" or "NIH delivered the money they promised but we need more". I'm in no way trying to shut down conversation, just take any major discussion elsewhere. If somebody visits this thread afresh and is interested in, as a very likely example, who has been funded or what are the plans of each centre, all things related to the thread topic, it's not going to be helpful to wade through pages and pages about Stanford not getting funded, or the need for more money.


Which is the sort of thing that I'm asking for, so I don't get your problem here, respectfully.

y u so angry
 

Forbin

Senior Member
Messages
966
It may be worth remembering that it was Ian Lipkin who found his ME/CFS grant proposals being denied not so long ago. He spoke about it in this interview with Mindy Kitei in 2014

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score. Am I upset about this? Absolutely.
- - -​
[In the first set of critiques I was also told] that everybody knows that this is a herpes virus infection of peripheral blood mononuclear cells so there’s no reason to look at the gut. This is the nature of study sections. You can’t control what people are going to do when they get on…. They do the best that they can, but that doesn’t mean they’re up to the task and it doesn’t mean that they’re appropriate.

One of the challenges is that there aren’t enough people doing credible research in the field. Period. If there were more people, you’d have better study sections, better work and we’d be further along in terms of sorting out this problem.

http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html
 

Demepivo

Dolores Abernathy
Messages
411
It may be worth remembering that it was Ian Lipkin who found his ME/CFS grant proposals being denied not so long ago. He spoke about it in this interview with Mindy Kitei in 2014

Yes, I spoke to Prof Julia Newton a year ago and she spoke of her frustration at getting bad peer reviews from a well known psychiatrist.

It is a political game and you have to know how to play it.

Maureen Hanson, Lipkin & Unutmaz all seem adept at lobbying in the right way.
 

A.B.

Senior Member
Messages
3,780
I too have a good impression of Derya Unutmaz. I see him as scientist willing to take some risk and make a difference in a field where there is still much left to discover. He also signed the "ME is not a functional disorder" petition. It's always nice when the scientists support us.
 

Groggy Doggy

Guest
Messages
1,130
The "unbiased" blogger who is sponsored by OMF? At this rate I may be surprised if Ron gets any NIH funding, cause it seems the more that's written/posted/tweeted only confirms that the NIH study reviewers were correct in their assumption of COI. IMO, a public relations firm needs to intervene, ASAP, cause it seems a bigger hole is being dug each day.
 
Last edited:

adreno

PR activist
Messages
4,841
A 13-page thread on the Research Centers on Phoenix Rising was dominated not by expressions of glee that the Research Centers were finally underway, but more by dismay that Davis’ Center was not selected.

https://www.healthrising.org/blog/2017/09/30/three-nih-funded-mecfs-research-centers-controversy/
Funny how he has to reference a thread on PR rather than his own site. Could it be because nothing's going on at HR?

However, I don't think this thread is dominated by dismay, although there has been a few complaints about it. But I guess it sounds cool to say so on a blog.
 
Last edited:

Tally

Senior Member
Messages
367
The "unbiased" blogger who is sponsored by OMF? At this rate I may be surprised if Ron gets any NIH funding, cause it seems the more that's written/posted/tweeted only confirms that the NIH study reviewers were correct in their assumption of COI. IMO, a public relations firm needs to intervene, ASAP, cause it seems a bigger hole is being dug each day.

Well if you would put that shovel down for a moment the hole would stop getting deeper.

And no one would have to waste precious money meant for research on public relations. I have only seen positive comments about OMF and disappointment they didn't get funded on all other social networks other than this forum. Maybe you should consider that you're in an echo chamber and have a very twisted image of how great majority of patient population views OMF.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Well if you would put that shovel down for a moment the hole would stop getting deeper.

And no one would have to waste precious money meant for research on public relations. I have only seen positive comments about OMF and disappointment they didn't get funded on all other social networks other than this forum. Maybe you should consider that you're in an echo chamber and have a very twisted image of how great majority of patient population views OMF.


I haven't expressed an opinion one way or the other but the fact that both sides of view are represented here and your other sites only represent one opinion suggests that PR is not the echo chamber.
 

Groggy Doggy

Guest
Messages
1,130
Well if you would put that shovel down for a moment the hole would stop getting deeper.

And no one would have to waste precious money meant for research on public relations. I have only seen positive comments about OMF and disappointment they didn't get funded on all other social networks other than this forum. Maybe you should consider that you're in an echo chamber and have a very twisted image of how great majority of patient population views OMF.
I was once a HUGE fan of OMF; but sadly after the last few weeks my views have dimmed. OMF has dug it's own hole, and they own fixing the COI issues detailed in the NIH study report.
 

Tally

Senior Member
Messages
367
I haven't expressed an opinion one way or the other but the fact that both sides of view are represented here and your other sites only represent one opinion suggests that PR is not the echo chamber.

When majority is being silent it's an echo chamber. Very few of us dare stay here and speak up. The tone is harsh and very divisive. That you have formed your own clique here is nicely reflected in your choice of words "your other sites" when you are talking about the biggest most diverse social networks on the planet.

I was once a HUGE fan of OMF; but sadly after the last few weeks my views have dimmed

Yes it is very clear that several users here have let their disatisfaction with one person connected to OMF make them completely incapable of objectively judging the impressive quality and importance of science being done there and dedication of dozen or so researchers connected to them.

If you could look at this less emotionally you would realize that hole you're digging will swollow you too.

OMF needs to fix their "conflict of interest" just like I need to just get out of bed and exercise.
 

A.B.

Senior Member
Messages
3,780
Yes it is very clear that several users here have let their disatisfaction with one person connected to OMF make them completely incapable of objectively judging the impressive quality and importance of science being done there and dedication of dozen or so researchers connected to them.

If you could look at this less emotionally you would realize that hole you're digging will swollow you too.

OMF needs to fix their "conflict of interest" just like I need to just get out of bed and exercise.

The recent events were the PR board crisis. If someone's view of the OMF has dimmed because of this, it doesn't mean that they endorse the idea that having a son with the illness represents a conflict of interest. You're making an incoherent argument.

My own view is that the three winners are without a doubt excellent choices. I too would have liked the Davis team to win, but not knowing the review process I can't make an informed judgment on whether they were better than the other three winners.
 

Tally

Senior Member
Messages
367
The recent events were the PR board crisis. If someone's view of the OMF has dimmed because of this, it doesn't mean that they endorse the idea that having a son with the illness represents a conflict of interest. You're making an incoherent argument.

You are the one being incoherent. @Groggy Doggy mentioned both the dimming and COI in one comment so I answered about both as well.
 

adreno

PR activist
Messages
4,841
You are the one being incoherent. @Groggy Doggy mentioned both the dimming and COI in one comment so I answered about both as well.
What some members here are advicing against is representatives of the OMF using their influence in the community to put pressure on the NIH for delivering a specific outcome. This is, as explained, neither in patients' nor the OMF best interest, as the NIH finds this meddling inappropriate.