Trans-NIH ME/CFS Working Group Telebriefings 2020

From via @Leonard Jason on FB

 

Just FYI, here's where to find the list of events for the Trans-NIH ME/CFS Working Group

https://www.nih.gov/mecfs/events

It lists past events as well as upcoming events.

 

Reminder, this call is tomorrow - Tuesday, March 17th, 11 am Eastern Time.

 

Anyone listen?

 

Meeting went south because of Koroshetz, according to Claudia Carrera. She says she’ll upload the audio shortly.





Comments by Jen Brea (did not attend the call I believe), click on her tweet to see her further replies

 

I can appreciate this perspective:



IMO some patients can assume that progress will be easier to achieve than is likely, or even that we've made more progress already than we really have. If we're getting more recognition of how little we know, and how little past research has contributed to ME/CFS, those are positive things compared to leaders at research institutions assuming that things are going fine and ME patients just complain too much. A lot depends on exactly what was said though.

 

My purely hypothetical take on the situation, from having watched Koroshetz talk on a few occasions is that he is more of politician, who got strong armed into me/cfs by Collins. I doubt he has any real interest in the condition and just puts on a political facade of saying the right things.

While he may have a realisitc view of the situation, he is an observer, and won't actively try to change it, despite being in an influential position. That may be why his view is both realistic and disheartening.

 

He’s not really a politician; he’s a neurologist whose primary interest is research on the brain. A Harvard Professor of Neurology before being tapped for NIH. Collins didn’t assign us to him. We were a part of the package when he became head of National Institute of Neurological Disorders and Stroke (NINDS). Research on our disease has increasingly moved from the National Institute of Allergy and Infectious Diseases to NINDS.

We are a homeless disease at NIH, not completely associated with any one Institute. In my opinion, Koroshetz always seems uncertain about how we landed on his plate. I don’t know about other countries, but here in the US, our relationship with neurologists has always been problematic.

Koroshetz doesn’t “get” this disease. He always makes painful mistakes when he talks about it. And he certainly doesn’t understand why we should be a priority. I think that Dr Collins understands this disease much better than Koroshetz does. Koroshetz would clearly rather spend his time on more traditionally neurological diseases. But we are his responsibility and he needs to step up.

I think that we will have to keep pushing hard to get what we need. I am cautiously hopeful that the plan that is currently being developed will give us a push in the right direction.

 

And Claudia corrected herself of Twitter. He said that we need 500 to 1000 researchers; not 500,000. It’s hard to catch all of the information on the call.

 

Thank you for the information. I can confirm, at least, clinically, my interactions with neurologists have been the most unhelpful.

 

Transcript now available
https://www.nih.gov/research-traini.../mecfs/nih-me/cfs-advocacy-call-march-17-2020

 

I was curious about the famous hope thingy:

Not as bad a response as I expected, but that "should" is doing a lot of work. Are they ready for this? Because it's not something one hopes to do. Gonna have to bring papa Yoda to the fold here: do or do not, there is no try. Are they preparing? Or "hoping" to prepare with no intent of following through? Because given how prevalent those issues became with SARS-COV-1, it's not just prudent, it's necessary and self-evident to take significant actions.

Especially as almost every week seems to add meat to the bone of neurological symptoms of COVID-19. There is only one interpretation of being ready here and it means being proactive and doing things without being told exactly that those things should be done since we clearly have no input into what it is they actually do on a daily basis over there.

What was that about hope without action again? Yeah, that. Where are the actions?

 

I really appreciate the callers questions, putting them on the spot regarding funding. They soon put a stop to the callers though by ending the conference call.

I don't know why they keep insisting on focusing on new young researchers. Fund the experienced ones first, and bring other experienced researchers in who can mentor younger folks. As one caller said, the CRC's were meant to encourage more grant applications and that has not happened.

One thing I do appreciate though is that they are working with researchers to provide feedback on grant rejections that help them to rewrite and resubmit. Well at least they say they are. I wonder if this is why there has been no comment from Ron Davis team/OMF about all the grants they submitted in June 2019.

 

Thought it was interesting. Made some highlights on Twitter which I will be reposting here.



1) On March 17 there was ME/CFS advocacy call at the NIH. The audio recording and transcript have been made available here: https://www.nih.gov/research-traini.../mecfs/nih-me/cfs-advocacy-call-march-17-2020

I thought it was interesting. I’ve made some highlights in the tweets below:

2) Vicky Whittmore of the NIH said they were planning a workshop this spring to discuss clinical outcome measures and clinical trials in ME/CFS. She also said that they are partnering with the CDC to put an Interagency Working Group for ME/CFS in place.

3) Leonard Jason talked about his prevalence study of ME/CFS in youth and said his team was in the process of recalling the 44,500 phone numbers that were reached for follow-up study.

4) Jason said he had permission to follow-up on the 42 young people with ME/CFS that were identified in the prevalence study, but that he didn’t have funding for that yet. He also said to have blood and slide samples in deep storage for this group.

5) Terri Wilder of ME Action reminded that activists with ME interrupted Dr. Francis Collins’ opening statement for the House Appropriations LHHS Subcommittee and that Collins didn’t use this opportunity to talk about ME/CFS despite permission to do so from the subcommittee Chair.

6) Wilder said: “This was a huge missed opportunity to educate and raise awareness about this disease […] Why didn’t Dr. Collins include our disease in his opening remarks to the Committee? He named many other diseases and could have certainly named ours.”

7) Dr. Walter Koroshetz, an NIH director, responded that Collins has pushed the institutes to move much faster and more aggressively into ME/CFS research, saying: “he is your champion; no question about it.”

8) Koroshetz added: “I think we are on board with the request that ME/CFS funding be much more robust. We don’t think that at the current level it’s – it would almost take a miracle to solve ME/CFS….

9) Koroshetz: “… We need folks like Dr. Jason and probably maybe 500-to-1000 more to dedicate their careers to ME/CFS”

10) Claudia Carrera also of ME Action called in later during the hour. She said that the NIH should expand the Collaborative Research Center Network and noted that when adjusted for inflation, current ME/CFS funding was comparable (only a little be higher) to that in 1995.

11) Carrera said: “you have not doubled ME efforts and resources at NIH. You have reinstated funding that was cut from ME research in the early 2000s, and we are barely getting more NIH resources now than we were 25 years ago”

12) Koroshetz responded: ”Our problem at the current time is that the number of applications is terribly, terribly small. So, the goal, if we’re going to change the playing field, we need more people to work on ME/CFS."

13) Koroshetz added that “grants that come in on ME/CFS actually get funded at a rate that’s either the same or better than the other grants that we see.” And he emphasized that “three times a year, anyone can write an NIH grant.”

14) Earlier during the hour a patient called Whitney joined in, said her ME was triggered by H1N1 swine flu in 2009 and asked how the NIH would study links between ME and any potential post-viral fatigue syndromes that we could see resulting from coronavirus.

15) Joseph Breen responded that currently therapeutics and vaccine studies are top priority because of the crisis. Jason mentioned a comprehensive survey by Lisa Petrison that might be helpful to record outcomes.

16) Later Jason emphasized that “this is a time of unequaled opportunities for researchers to get involved.” He noted that “what’s happening right now is such unique opportunity to basically find a cohort and to sort of see the manifestation of the immune system”

 

If I understand correctly anyone can apply for an NIH grant, so researchers in Europe as well.

I know this takes quite some effort and the chance of getting funding are low (around 14-18% if I'm not mistaken). But I suspect that researchers who do not apply for NIH grants will have to write something up anyway, for example, to get funding of their university or grants from charities like MERUK and Solve ME/CFS Initiative.

So I was thinking: would it be possible to set up a team of patients who try to specialize in this and help out with rewriting that information about the study project into an NIH grant application? So anytime a ME/CFS researchers work on a new project one might try to apply for an NIH grant first.

Any thoughts on this from people with more knowledge and experience than me?

 

I had emailed Dr. Koroshetz earlier this year asking about grants from researchers outside the U.S. here is a snippet:

It is possible for scientists from overseas to get “direct ” funding from NIH but the qualifications are: “ Whether the project presents special opportunities for furthering research programs through the use of unusual talent, resources, populations, or environmental conditions in other countries that are not readily available in the United States or that augment existing U.S. resources” I would guess that we fund about 5 foreign applications per year. https://grants.nih.gov/grants/foreign/index.htm


Much more commonly we fund grants to US Universities who have collaborations with scientists overseas. The US University then does a “subcontract” to support the work done overseas.

 

Thanks very much for this info Ron.

It seems that it would be rather difficult for European ME/CFS researchers to obtain an NIH grant, although perhaps the solution would be to form a collaboration with US teams as much as possible. I have the impression that many ME/CFS studies are too small to try to obtain an NIH grant or funding from other large research donors. So teaming up to increase the sample size and writing grant applications together might be another option to get more funding from outside the ME/CFS community.

Yes, that was what I was thinking of, although based on Koroshetz response to Ron this seems to be very much the exception.