ME/CFS Collaborative Research Centers & Data Management Center Announcements

[greeneagledown]

The three selected are excellent choices. If you think otherwise, please provide evidence of their lack of merit.


How can you be an objective judge when you haven't seen any of the proposals or reviews? You seem highly biased in favor of OMF, to the point that you ardently believe they were the most deserving without even knowing who some of the alternatives are.


It seems more likely that all of the centers were excellent options. Instead of some losing out due to being flawed, they were probably excluded because another option was a bit better. Or because they simply had a better application. Not everyone could win ... at least, not yet.

It's disturbing to see the winning ME researchers being attacked as somehow being not good enough, just because some people wanted to see someone else get funded.

I mean, I agree that they are excellent choices. And I am definitely biased in favor of OMF. Hard not to be.

But you have to be disturbed by the reasoning they gave Ron Davis for turning him down, and it makes me question the process. They might as well have told Ron they turned him down because his last name has five letters, or because he applied on a Tuesday.

 

[Valentijn]

See Janet Dafoe's report below on what they wrote to Ron in his review, you may think differently at least in regards to that part.

That's a third-hand report from a source which is extremely invested in a specific outcome. There probably is some substance to it, but it's impossible to judge that while relying on rumors. And minor details, which are not flaws in the greater scheme of things, may still have been enough for some institutions to be genuinely outshone by others.

It's clearly not the case that a poor review was used to avoid any funding at all, or to give it psychobabblers. It simply doesn't make sense to suggest foul play when the funding is going to other excellent researchers instead.

 

[greeneagledown]

That's a third-hand report from a source which is extremely invested in a specific outcome. There probably is some substance to it, but it's impossible to judge that while relying on rumors. And minor details, which are not flaws in the greater scheme of things, may still have been enough for some institutions to be genuinely outshone by others.

It's clearly not the case that a poor review was used to avoid any funding at all, or to give it psychobabblers instead. It simply doesn't make sense to suggest foul play when the funding is going to other excellent researchers instead.

I, at least, didn't suggest foul play. Probably just incompetence on the part of the specific individuals who reviewed Ron's application.

 

[ivorin]

That's a third-hand report from a source which is extremely invested in a specific outcome. There probably is some substance to it, but it's impossible to judge that while relying on rumors. And minor details, which are not flaws in the greater scheme of things, may still have been enough for some institutions to be genuinely outshone by others.

It's clearly not the case that a poor review was used to avoid any funding at all, or to give it psychobabblers instead. It simply doesn't make sense to suggest foul play when the funding is going to other excellent researchers instead.

I agree with that too, but you can't say the explanations given don't sting a bit :/

 

[Rrrr]

i'm disgusted that ron davis was not funded. the reasons were a load of crap, as far as i am concerned.

 

[Rrrr]

Here is how to donate to Ron Davis's work. Am I allowed to post this? If not, please take down or let me know and I will: https://www.omf.ngo/donate-to-the-end-mecfs-project/

 

[AndyPR]

And for balance, here is how to donate to;

Ian Lipkin's work at Columbia - https://web.giving.columbia.edu/giveonline/index.jsp?schoolstyle=5881&alloc=12636
Derya Unutmaz's work at Jackson Lab - https://www.jax.org/give-to-jax/make-a-gift/give
and Maureen Hanson's work at Cornell Uni - https://giving.cornell.edu/

 

[Forbin]

Since all three of the centers seems to be interested in the microbiome, and since some of the microbiome results so far have already shown similarities to results that have shown up in inflammatory bowel diseases like Chron's, I wonder if it wouldn't be worthwhile to just "cut to the chase," so to speak, and investigate directly whether or not ME/CFS patients show a pattern of inflammation in the lining of the gut.

Investigating the lining of the small intestine used to be next to impossible because it is too convoluted to visualize anything more than the distal ends with a fiber optic scope. However, for more than a decade, it has been possible to get images from within the small intestine using a tiny "camera pill," in a procedure known as "capsule endoscopy."

This seems like something that might already be planned for the NIH intramural study (since they're throwing so many different tests at the problem), but I don't recall hearing anything about it.

 

[Jo Best]

Investigating the lining of the small intestine used to be next to impossible because it is too convoluted to visualize anything more than the distal ends with a fiber optic scope. However, for more than a decade, it has been possible to get images from within the small intestine using a tiny "camera pill," in a procedure known as "capsule endoscopy."

At the UK Centre of Excellence, Simon Carding is leading the research on the role of the gut / microbiota in ME (ME/CFS Canadian Consensus Criteria for research purposes): https://quadram.ac.uk/targets/me-cfs/

Here he swallowed a "camera pill" (not specific to ME.CFS):

 

[Nickster]

My son Nick did the camera pill and it takes several pictures as it goes down the digestion system. So depending on where the camera lands it takes random pictures thruout the system. His results showed some inflamation in his lower intestine and the gastroentologist did not think it was significant and recommended him to take pepcid. However, my son has said from the beginning of his illness that his lower gut was in pain and when it moved he would feel worse. He always went back to the lower gut as one of his main problems.

 

[snowathlete]

I am very pleased that NIH has funded some promising research. Good on them for that because it's what we've been calling for and what is badly needed. I think there needs to be much more but it does seem they are beginning to deliver on their promises. Well done to those who got funding, I am familiar with most of them and rate many of the individuals involved.

I'm disappointed that Ron Davis' team didn't get funding because I know the people involved are extremely good. Having spoken with Dr Davis a few years ago I was blown away by how brilliant he is and his focus on carrying out science in a way that delivers actual usable benefit to real patients in the real world as fast as possible.

He isn't about pointless papers in journals that don't lead to any meaningful change. And he has created a team of scientists around him that I don't think any other group researching ME can match. I know Linda, the CEO of OMF, is also extremely smart and driven and she manages the OMF very effectively and with the same passion to actually change the lives of patients with ME.

I'm going to avoid remarking too much on the review comments because I haven't seen them in their context or those of other applicants for comparison. But I don't agree with them saying Stanford is mediocre, in any context that comment would seem completely removed from reality to me. I also agree with Dr Davis' approach to solving the problem of ME, and I think the NIH's competitive approach can be less efficient.

At the end of the day though, to get what we want, at this stage it might be that the best way to get funding is to jump through the NIH's hoops, even if we think they are stupid hoops, because that's likely to be more effective than the other options people are talking about. I know publication takes time but maybe churning something out so that this criticism is removed would be a good move because it sounds like that was a major reason why the application was rejected this time. I agree that shouldn't be necessary and seems at odds with the stated aims of the funding purpose, but it just might be the most pragmatic way to get funding next time round. These decisions are incredibly frustrating, hopefully next time we can celebrate Dr Davis' and the OMF getting the support it needs from the NIH because I am sure they will deliver.

Anyway, sorry, I don't want to come across too disappointed, I am genuinely pleased the NIH has funded the other researchers and I look forward to the outcome of their research over the coming years.

 

[neweimear]

That is my worry though, years....how many years. Will we live to see the benefits...years for the bed ridden is unimaginable....Ron Davis understands the urgency, I think Maureen Hanson does too. All we can do is keep donating to OMF, to me, they remain our best bet.

 

[snowathlete]

That is my worry though, years....how many years. Will we live to see the benefits...years for the bed ridden is unimaginable....Ron Davis understands the urgency, I think Maureen Hanson does too. All we can do is keep donating to OMF, to me, they remain our best bet.

It always takes years I'm sorry to say. I think Ron Davis' approach is quicker, but high quality research still takes a lot of time to carry out properly. It's particularly hard for patients waiting with no treatment. I think that unmet need is why the NIH needs to continue to fund more and more new research because we're dying here and have no help at all yet. So thank you NIH for this latest round of funding, but please don't rest on your laurels just yet.

 

[SB_1108]

While I'm grateful for these crumbs from NIH, ultimately I'm concerned that the review process will prevent Dr Davis from ever receiving ANY funding. I'm concerned that the reasons they provided for denial were so ridiculous that whoever the reviewers were must have a bias against him. The rationale used to deny him funding for this grant will remain an issue during the next grant... His son will still have ME, Stanford will still be a "mediocre environment" and Janet remains involved in the community. I think the ME community needs to be more involved who serves on the NIH review panel. We may need to provide some suggestions to NIH about who would be a better fit to review grant applications.

 

[srallis]

Has the ME pot reached the total funded for male pattern baldness yet?

Lol, I know I sound so ungrateful, but, jeez we're supposed to be so grateful for the tiny offerings, compared, to say MS, RA etc. The funding is so far off what the disease burden merits it's still almost laughable.

Last I read, male pattern baldness was getting $16 million--so we're almost halfway there.

The NIH makes my physically sick. They point to @Janet Dafoe (Rose49) involvement, as well as Whitney being a patient as a "conflict." This is disgusting. A mother is fighting to save her son's life and just happens to be married to possibly the greatest scientific inventor/researcher of our time. That sounds like a godsend, not a problem.

And Ron has pulled together some of the key people to crack this monster disease. The NIH in a snit over Ron trying to HELP patients with suggestions based on early results? Apparently, bucking the bureaucratic b.s. is simply not acceptable.

Maybe, too, their snit includes Ron calling them out for dropping his other grant because NIH not interested in research that would help lower health care costs.

I'm happy for the other researchers. But regarding Ron and the "mediocre" Stanford research capabilities, this is an effing black day for MECFS.

 

[snowathlete]

While I'm grateful for these crumbs from NIH, ultimately I'm concerned that the review process will prevent Dr Davis from ever receiving ANY funding. I'm concerned that the reasons they provided for denial were so ridiculous that whoever the reviewers were must have a bias against him. The rational used to deny him funding for this grant will remain an issue during the next grant... His son will still have ME, Stanford will still be a "mediocre environment" and Janet remains involved in the community. I think the ME community needs to be more involved who serves on the NIH review panel. We may need to provide some suggestions to NIH about who would be a better fit to review grant applications.

do we know who the reviewers were?

Ron's son having ME should be no biggie, they funded Hanson and her son has ME too. It's not usually a barrier against funding or involvement in any other field of medical research that you have a family member with the disease you're working on. I'd be interested to know if Hanson's review pointed out the same thing. I don't think it should be highlighted in either funding review. Take an example from the UK which is completely backwards normally: NICE have a document all about COI and yet even they recognize that it is not an issue if you have a family member with the disease, and specifically say so; it's not counted as a COI. If the UK can get that right I'm surprised that the more forward thinking US raise it as an issue.

 

[Barry53]

I too am disappointed that Ron Davis's bid did not get funded. I am an admirer of the work of Ron and his team, and, like many here, have donated to OMF to support his work.

However, I am also very pleased that 3 excellent projects are getting funding, and think we should not lose sight of this. Surely it is something to celebrate that the NIH has at last put some funds into good ME research. Nowhere near enough, but a good start.

I hope Ron's next application is successful.

I can't help wondering whether any kind of e-mail campaign or petition might be counterproductive in this context. NIH has to judge applications on the merits of the bids as their advisors see this. We are not in the position to make judgements on whether they were fair or not.

There were clearly more than 3 excellent bids, so some were always going to miss out. Attacking the NIH at this stage rather than thanking them for making a good start might not go down well.

I agree. I, also, am really sad Ron's great work has not been funded, and particularly aghast at the reviewer's very biased-sounding observations, especially treating Whitney as a conflict of interest - even the NHS clarifies that is not a COI. But I am nonetheless elated this level of funding is being invested in good ME/CFS research at all, which sends an important message to the world. Fingers crossed for Ron and his great team next time.

 

[Barry53]

But I think if we expose their bullshit reasons for refusing this one, they will be more inclined to accept the next one.

How do you know they will? Or that they may just decide it better to invest in something other than ME/CFS next time? I'm not against what you say in principle, but worry we could just shoot ourselves in the foot if not very careful.

 

[Barry53]

I agree with that too, but you can't say the explanations given don't sting a bit :/

Yes it does hurt, and I do very much agree with that. But ME/CFS patients have been "stinging" for a long time now, much of it due to being stung by some pretty poisonous creatures. But this NIH funding decision, standing back and taking the bigger picture, is pretty monumental, and will still hopefully help further loosen the BPS stranglehold.

 

[Nielk]

NIH grant selection process for ME/CFS, historically, has been skewed in favor to those who have ties to the gov't like Lipkin or those who do psych and fatigue studies like Fred Friedberg.

To believe that they have suddenly changed their ways and have been totally fair in their selections is naive.