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

Fauci to leave NIH in December

https://www.cnn.com/2022/08/22/politics/anthony-fauci-government/index.html

 

The NIH post re Fauci's departure

https://www.nih.gov/news-events/news-releases/statement-anthony-s-fauci-md

 

That sounds like a push, Biden has with his actions has shown he is really unhappy with the NIH and CDC in regards to Long Covid and the creation of a specialist department in the Whitehouse is the sort of move he should never have to do. I suspect the replacement will be very pro getting research done on ME/CFS and Long Covid, this is likely very good news.

 

I've just come across a recording of this event which I don't think has been highlighted before (it's only got 20 views)

https://www.youtube.com/watch?v=3gVJWvRJ36I

 

NIH Extends Funding for ME/CFS Research Centers

https://www.meaction.net/2022/09/07/nih-extends-funding-for-mecfs-research-centers/

https://twitter.com/user/status/1567543321362317312

 

Its good the gap has been bridged but its not even 1 million in total for 7 months. At this point the funding situation with the NIH in regards to ME/CFS is beyond ridiculous.

 

Three NIH studies will focus on fatigue

https://www.thebeaconnewspapers.com/three-nih-studies-will-focus-on-fatigue/

 

Wow.. ketamine for ME? I wouldn't guess that would be the answer.. but hey - always good to have some data I suppose.

 

"The entire fatigue experience"? Ketamine? Okay.

 

Ugh. I saw that. Complete waste yet again.

 

Brain Vastag says that the authors of the NIH intramural ME/CFS study are getting close to submitting it to a journal. Details in this twitter thread:
https://twitter.com/user/status/1568704881061687296

 

About bloody time!

 

In the last tweet Brian Vastag says this:

"One more thought: This study was ambitious & very large in terms of data generated. I don't think there's any precedent for using 30+ advanced research techniques in a huge, hypothesis-generating fishing expedition to try to understand the biological basis of a disease."

Is this actually true? If it is, i find it quite bizarre and telling of the sad state of medicine overall. Because the way i see it, many diagnoses are composed of a broad, heterogeneous basket of patients that clearly do not all have the same illness. Maybe they do, and I'm wrong, but we don't know that, really. It's completely arbitrary. This is particularly the case when it comes to psychiatric illness. Given that:

1. We know for a fact brain symptoms can come from a large variety of causes (which often reside outside out the brain),
2. Patients have a large variety in symptoms, often having symptoms opposite of what another patient has, forcing diagnostic criteria to be absurdly broad to include everyone and often rely on the subjective judgement and interpretation of a biased psychiatrist who has their own, non evidence based ideas and dogmas (and of course awful questionnaires as we have seen),
3. There are subgroups of patients for which treatments don't work at all (treatment resistant depression, ADHD people that don't respond to stimulants at all and actually do not even have hyperactivity, just to name a few).

Wouldn't it be logical to pick out the patients who don't respond to treatments and have symptoms that are atypical and try to do the above mentioned approach to try and figure out if they maybe have a completely different illness? Why is this never done?

I mean, look - if you have let's say an adult patient with attention problems who is diagnosed as ADHD, and then he doesn't respond to stimulants at all (which we know are extremely effective for ADHD), but actually he doesn't even have hyperactivity so you had to stretch the diagnostic criteria to include him, and then he probably has a bunch of other physical symptoms that (actual) ADHD people don't have but they are ignored by psychiatrists or interpreted as somatization. And then actually if we looked closely we would notice the attention issues this person has are different to other patients (picture for example how doctors are unable to distinguish between cancer/depression fatigue and ME fatigue even though the two are completely different. The same thing almost certainly happens in psychiatry as well. "attention problems" seems like a unspecific label that probably includes many ways the brain can malfunction. There are papers that describe how the vast majority of doctors are completely unable to distinguish between apathy and low mood associated with depression even though they are clearly distinct symptoms). And so on. You get the idea.

Why do we just say "yeah it's ADHD buddy try to deal with it good luck" and send them on their way to some vulture psychologist who will do absolutely nothing to improve the situation instead of, you know, leveraging our advanced medical technology to its limits to try and figure out what's really going on?

This is just an example. We know for a fact pwME are misdiagnosed as depressed or psychotic all the time, who knows what else they have in there. Maybe I'm missing something but medicine seems to always give up so easily. And you can't say they don't have the funding - they clearly do. In psychiatry they do studies on millions of people. But that's all they seem to be able to do - repeat the same thing they have done before and upscale the numbers. Why not try something a little more ingenious and sophisticated?

 

Had the exact same reaction. If true this is just sad and explains a lot about the lack of progress.

 

It's especially bizarre considering all the talk about "personalized" and "precision" medicine. It makes me wonder if a large portion of medicine is just pure marketing BS to set up pump & dumps for VC backed startups and secure funding for intellectually lazy and corrupt researchers.

 

AFAIK, NIH doesn’t do translational research (ie early stage hypothesis generating). They fund research that is further along with a lot of data to back up solid theories. So I think this is what Brian is referring to. Translational science is done in universities or private labs and with mostly private funding. Then further work is funded by NIH when there’s good data. Then biotech will license tech from university’s and develop from there in the higher risk stage of development, and pharma company’s partner with or buy the biotechs.

Progress is all to do with money (mix of public / private funding) following trends in research and biotech where a couple of trends are a focus for a decade at a time, so funding all will flow towards one disease type or theory for that for years. Brain disorders have been notoriously difficult to make progress with and investor funding dried up for them as more trials failed.

I know some people who run a small biotech in neurological disease space.. Regulated industries are not easy spaces to be successful in. It’s taken two decades to progress their compound through trials, with so many hurdles along the way. They are personally committed to helping people w neurological diseases bc of family members, or maybe they would have walked away.

 

Thank you for sharing and for your thoughtful contribution.

I wasn't specifically referring to NIH, but to medicine in general. You say NIH doesn't do early stage translational research, fine. Well, why aren't universities doing it then?
You mention private labs. Why should private money fund high risk early stage research to figure out the cause of an illness, just so some other company can make a drug and reap all the profits? That's exactly what public money is supposed to be used for. We figure out what's wrong with the patients then private capital can jump in to make a drug to treat the issue (and make a lot of money, which is obviously what an investor wants, they are not doing charity!). It makes sense drugs could take a long time to get approved because they can cause harm and you have to be sure that they work.

The system seems completely and utterly broken if all the public money goes towards studying the same hypotheses over and over (even when they don't lead anywhere!) and nobody is making an effort to leverage the cutting edge technology to really get to the bottom of the issue.

I get it that sometimes a private company like the one you mention jumps in with a shiny new diagnostic toy or something of the sort and they try to (i assume) make profits from the patent if it works out. That's totally fine. Startup innovation is cool. But it's not an efficient method in an illness like this one. Public institutions should be setting up in depth studies leveraging all the technology they have access to instead of sitting on their ass for decades doing nothing while they wait for something to happen.

 

Universities are doing it. If they develop a technology or a product they patent it and get paid licensing fees. Some universities have like mini-VCs that they set up to fund promising work. If you look for interviews w the late Ron Tompkins you’ll find him talking about his group at Harvard and how they worked.

Private money from foundations or philanthropists or small donors goes into funding out of altruism because these gaps exist. Some disease foundations might help start or invest in biotechs so if the product succeeds they get a return that they can reinvest in the disease research.

The system is broken where public funding is so disproportionate to “popular” diseases like HIV and doesn’t switch as time goes by to more needy diseases like ME. That’s where activism and political lobbying comes in and why groups like MEAction and Solve are so busy on Capitol Hill. Post viral illness is also the silver lining in the pandemic in that we simply were never going to have political clout or attention or funding until the pandemic happened. It’s not fair, but life isn’t fair is it.

NIH has I think launched some newer initiatives that are more about studying disease processes that are across diseases (like inflammation). I can’t find any links on this but I feel that I have read about it somewhere. So something might come from those before it comes from a specific ME focused research group. They’re also doing massive projects like “All of Us” where they gather health data on tens or hundreds of thousands of people. (Maybe this is actually considered more translational science so what I said is not entirely accurate?)

Re startups: I think you misunderstand me. I’m not saying that sometimes this happens — this mix of public / private funding, and university to startups to pharma is how every medicine is developed. Its the only method for development bc it’s a risky process that has to be shared by lots of investors over a long period of time.

 

Sorry if i didn't explain myself properly - i meant to ask why nobody is doing what NIH is doing right now with the ME/CFS intramural study. The tweet by Brian Vastag says it has never been done before and i think that's not acceptable.

 

Sadly, the entire history of our disease is unacceptable and long and depressing..