USA: NIH National Institutes of Health news - next ME/CFS webinar 14 Jan 2025

I am so hoping that his successor knows anything at all about ME/CFS.

 

Notable that he is immediately stepping down and the US senate is currently going through... some things, let's say... and is unlikely to confirm a new NIH director for several weeks, if not months. I wonder what effect that will have given that the $1.15B funding seems to be entirely at the discretion of the director.

 

Does anyone have a handle on what is going on re: Collins? I was not sure what to make of this.

 

He’s not stepping down immediately. It’s at the end of the year.

 

He’s been Director longer than any previous NIH Director. He has often spoken about getting back to his own research on diabetes. If he’s going to do it, now is the time. He’s 71.

 

Lots of information here.

https://www.nih.gov/news-events/new...step-down-director-national-institutes-health

 

Ah, must have misread. I saw something that said tomorrow but was probably the official announcement then. Seeing his lack of interest while on the job, however, I can't imagine this transition period will change that positively given all the loose ends and singing goodbye and everything.

 

https://twitter.com/user/status/1445469003300818945

 

Medpage Today: Collins to Step Down as NIH Director at Year's End

We get mentioned:

Members of the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community panned the NIH and the research community in general for not taking the disease seriously enough, but Collins disagreed. "It's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," Collins said in 2018. The previous September, NIH had awarded $7 million in grants to three clinical centers and a data coordination center to continue ME/CFS research.

He added, however, that "there are problems [in that] CFS has become such a blurry diagnosis, that in there amongst hundreds of thousands or millions of people who carry that diagnosis is a whole heterogeneous group and there may be individuals ... who have something else entirely or even people who are suffering from depression and are therefore feeling fatigue for that [reason]. I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments."​

You have to register to read it but it's not a paywall (the rest is not about ME/CFS): https://www.medpagetoday.com/publichealthpolicy/washington-watch/94861

 

Great that the interviewer asked about ME/CFS

 

That's just a slap to the face. The rest of medicine also did nothing, but Collins not only failed to change things, he was NIH director while ME was sabotaged to set the stage for decades of failure. That failure is on him, it was on his watch, and the crumbs he allocated to us don't even make up for 1% of the harm he did by failing while it mattered.
I misread and thought Collins had been NIH director for 30 years. Skimming does not exactly do for thorough understanding... ugh.

Collins did better than most, but he still accomplished nothing, that's because most either did nothing or impaired progress and caused harm. And I, personally, am not a fan of participation trophies. He was there while nothing meaningful happened, and that's failure. That he can say that on the backdrop of this failure being opened wide in LC is just staggering hubris and indifference to the role of medicine.

Maybe he did good things in other areas, but for us he may as well have been an empty chair.

 

I have to disagree. Collins became Director in 2009. ME was sabotaged long before that. He did not do even remotely as much as we would have liked him to do. But in 2009 when he came in, we were bogged down in the XMRV debacle. ( For those of you who missed XMRV, just be happy.) We had less than $4 million in funding, a good hunk of which went toward psychological studies. We had people in dentistry and other crazy areas evaluating research proposals.

At the end of his term, researcher funding is still too small, but it’s 4 times higher. We have 3 Cooperative Research Centers doing good work, along with a Data Center. We had a major conference at NIH a couple of years ago. The research that is funded now is all high quality research by good researchers. He assigned Dr Nath, one of his best guys, to do the intramural study which, although it was cut short by the pandemic, has started to publish its findings. He met personally with some of the participants in the study - the head of NIH doesn’t usually do something like that. He also met with representatives of ME Action and the head of NIH doesn’t do that either. There is now a special panel of experts that evaluates our research. I’m leaving out some things, I’m sure.

Did he do everything that I hoped that he would do? No. Did he do what we desperately need to have done? Not even close. He took the NIH approach, which is to move slowly, evaluate, then take a few more steps. That’s not just for us - it’s for everyone. But to blame him for things that he’s not responsible for isn’t fair. He acknowledges that this is a multisystemic biomedical illness that should be taken seriously.

I truly wish that he had implemented the great suggestions that were in the letter presented to him by ME Action. He took the NIH slow approach instead. But I don’t think that there is any question that he did more than any previous Director to move this disease forward in a sound scientific manner.

I spoke at NIH for the first time in 1992. I have watched NIH very closely since I was diagnosed in 1988. Dr. Collins could have done a lot more. We need a strategic plan, backed up by serious, set-aside funding. We need clinical trials of treatments. We need a whole lot to get out of the hole that we are in. But Dr Collins did not dig that hole. He gave us a little boost toward the surface. I hope that the next Director can do more to get us out.

 

Ah, my bad. I had misread that he had been director for 30 years. I really need to stop relying on my memory... it doesn't serve me well anymore.

I still think he could have done more but the erasure did not happen on his watch. His actions brought us back to that point, though I wouldn't exactly call that significant progress, nothing has changed for us. But the blame is obviously widely distributed.

I sure would have appreciated a better explanation than "I disagree" on the fact that there has been no progress. Whatever obstacles prevented Collins from acting, it would be great to hear them, so we can end the stalemate.

 

If Congress passes this new program, the new Director could use it to make much more rapid progress in ME/CFS research. (This is from the NIH piece on Dr. Collins above.)

“All these efforts have set the stage for a new component of NIH, known as the Advanced Research Project Agency for Health (ARPA-H), proposed by President Biden and strongly supported by Dr. Collins. ARPA-H is currently under consideration by the U.S. Congress. Modeled after DARPA in the Department of Defense, ARPA-H is envisioned to support and conduct high-risk, high-reward biomedical and health research in a way that is radically different than NIH’s grant-based system. The aim of ARPA-H is to collapse barriers and catalyze the development of transformative, evidence-based, use-driven cures for a range of biomedical challenges, from the molecular to the societal.”

 

I was just reading on ARPA-H yesterday while I try to get up to speed on it.

When it says "under consideration" by US Congress, do we know what next steps are? How would this get passed?

 

May I ask in what way was the intramural study cut short? Did it not look at all it said it would, or it studied less patients than originally planned? Thank you.

 

Fewer patients for sure, although it was never intended to be a large study. When the pandemic hit, all intramural studies at NIH were stopped. The decision was made to publish what they had and not start it back up when NIH reopened for intramural studies. I wish that they had been able to complete the study as planned, but I am eager to see what they found.

 

It’s in the budget currently being considered by Congress. I would imagine that a lot of Dr Collins’s remaining time will be spent pushing this forward. He is very good at obtaining funding from Congress.

From NIH:
To improve the U.S. government’s capabilities to speed research that can improve the health of all Americans, President Biden is proposing the establishment of the Advanced Research Projects Agency for Health (ARPA-H). Included in the President’s FY2022 budget as a component of the National Institutes of Health (NIH) with a requested funding level of $6.5B available for three years, ARPA-H will be tasked with building high-risk, high-reward capabilities (or platforms) to drive biomedical breakthroughs—ranging from molecular to societal—that would provide transformative solutions for all patients.

 

The NIH took ME/CFS much more seriously than other similar agencies in every other country in the world, and was the first to do so. It didn't do enough, true.

 

@Wilhelmina Jenkins, does this mean that ARPA-H is (likely) dead in the water for now?

https://www.politico.com/news/2021/10/08/biden-biomedical-research-agency-spending-bill-515666

https://www.politico.com/newsletter...priority-bumped-from-the-spending-bill-798121

https://about.bgov.com/news/health-care-briefing-lawmaker-moves-to-set-biden-biomed-agency/

"The multibillion-dollar Advanced Research Projects Agency for Health, modeled after an existing research agency in the Pentagon, has support on both sides of the aisle. But sources say senators dropped it from the $3.5 trillion reconciliation bill because it requires regulatory authorities that can’t be employed in the chamber’s expedited budget process known as reconciliation."

EDIT: They say that they will still push forward it - just not in reconciliation