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I think there are enough hypotheses about what's driving ME to spend $200 million a year - you could throw a lot of money at neuro-inflammation, immunological studies, viral persistence studies, autonomic studies and so forth and I'd assume you'd get a lot of null results, but that'd actually be really helpful, to be able to rule out potential mechanisms based on relatively large studies with controls.

It's a fair critique of the NIH that it tends to be relatively cautious in terms of what it funds. I suppose you're then looking at two forms of "progress":

a) Slow, incremental advances from bodies like the NIH

b) Fast, paradigm-shifting advances

We need both - the former to establish post-viral illnesses as a field where lots of researchers can actually have a career because they know they'll get funded in 5 years time, and the latter to speed things up. But realistically, the former is easier to achieve and does produce good results over time. Also worth noting that the Long Covid Moonshot called for $200 million from the 2025 budget to go to ARPA-H for 'high risk, high reward' Long Covid research

 

Also I hope I'm not coming across as being too critical/dismissive of ME advocacy. If Long Covid advocacy is more focused in its demands for more research funding than ME advocacy, imo that is largely because it is much easier to demand funding for Long Covid research. In terms of ME and an institution like the NIH, you're trying to reverse decades of neglect and marginalisation, which is extremely difficult. Whereas with Long Covid, there are still remnants of the urgency of the pandemic - which is why RECOVER can suddenly receive an influx of $200 million. Also because of the pandemic and because lots of people have fallen ill within the same relatively short window of time, it's much easier to appeal to politicians - to force something like the HELP hearing on Long Covid.

 

It's hard to say, except that I get a sinking feeling about anything that starts with a mission statement.

I don't know the first thing about science, to be honest. I know about ideas, though. I know that if you want a writer to make the best work they can, you don't start by offering them a fee to write the play you want. You ask them what they really want to write about.

I also know that if you offered a bunch of writers several years' guaranteed salary and a contract setting out exactly what you expect them to produce, the best ones would walk away. Maybe science isn't much like that; if so, it might explain a lot.

 

Actual, genuine mass hysteria. Because it's always projection when it comes to, well, mass hysteria / social contagion.

With the last few years pulling apart bad research from the people who would declare medical mass hysteria, I have zero doubt that there is no such thing. Certainly not as popularly described. And it's not even close, there is simply nothing there, false attribution error meets more logical fallacies and mix with egos and the iron law of institutions.

But this, here, is legitimate mass hysteria. It's not a medical thing, it's people overreacting to an imaginary fear. Even after it's been debunked. Even if it's completely ridiculous. It spreads socially even though it never had any basis. It makes them choose poorly and behave in irrational ways.

All the claims have been debunked. All of them. There have been hundreds of ME protests in history. All of them have featured at most dozens of people who mostly laid down, at most tried to, maybe succeeded, talk to authorities. Usually with no positive outcome. Usually we send letters. Or we talk to people on social media, and even that is framed as harassment.

And still the trope remains. Everyone seems to have stories, but nothing they themselves ever witnessed. We're basically as real as the boogeyman. But the impact of this tall tale is very real. It misinforms people's decisions that impact tens of millions of people, in a way that explicitly goes against the very reason their profession exists, and does far more harm than even the worst of the fake stories.

The reactions we see are basically like a whole tank battalion firing into a crowd because they think someone said they heard that someone probably had a slingshot and maybe a rock. And while the whole thing actually happened, it was just ripe fruit, but the story goes on and ever since the whole army, including the armored divisions, have a shoot first policy. All based on a lie. It's so ridiculous, but that's exactly what delusions are about. It's basically insane, but lies always lead to more lies, that's how power works, and how the people who run organizations protect themselves.

And that's about as close to the popular idea of mass hysteria as can exist. The only way it causes symptoms is indirectly, like how nothing has changed for us and tens of millions more have gotten ill because of those disgusting lies.

 

Ultimately, research is a brute force thing. No one knows what the real answer is, so it's like exploring a new territory without knowing anything about it. The only way to go about it is to spread out, go everywhere and branch out. Basically like how slime mold and bacteria solve the food problem: they spread, grow connections when they hit on something, and prune the ones that don't. Except here the pruning happens by itself, the cells just die. In research, sadly sometimes we have a process dumber than slime mold, where bad connections get all the resources instead. That's how psychosomatic ideology keeps on sucking all the resources away from where our salvation is.

So brute force still takes a lot of money. It's just about how it's used. $30M going at the same place is unlikely to be 10% as useful as having 10 teams spend $3M each doing things that don't overlap, with a bit of overhead making sure that overlapping answers and connections are made out of it. Just like explorers have to have some sort of coordination so they don't needlessly spend years mapping out the same territory. It's always better to have 100 people map it out than 10. And 1000 are even better. So money is a factor, but what we're lacking here is the usual academic interest that does the original mapping without needing specific funds. So we need to do it ourselves, it's clear that big organizations like the NIH don't know how to do this. Although this is definitely what I would recommend the NIH director if I had a say.

It didn't seem to have caught people's eyes, but a few weeks ago Christopher Strock, the WE&ME Foundation pwME, posted about funding a seed research grant, fast grants, model based around this. And I think it's the way to go: https://www.s4me.info/threads/austr...-stiftung-tempi-foundation.33328/#post-534194.

Where organizations like the NIH can be useful is in advanced technology. That's usually too expensive for small grants. In the end, technology is the only thing that really matters. It's going to be critical to find the problem, and then to solve it. But medical research doesn't seem to have a working model for this. Absurdly enough. Even though medicine is the world's oldest profession. It just appears to be stuck in some sort of weird arrested development.

 

Silence is often seen as acceptance. I think silence on "Deep phenotyping..." will lead to ME/CFS being assigned to Interoceptive Disorders at NIH. Already we see Functional Disorder being used by Nath to classify ME/CFS. The CDC could change statements on their website tomorrow, ME/CFS could be classified as a Functional Disorder.

We have CFS and the whole BPS crowd thanks to the CDC renaming ME. The CDC changed a biomedical illness to a mental one. The patients pushed back but who was believed the CDC or pwME? It took decades for the CDC to reclassify CFS as biological, and they renamed it, ME/CFS.

LC is supported mostly by one political party in the USA. The next election could eliminate all funding that hasn't been spent plus all future funding. Don't forget one political party thinks LC isn't real. They think Covid is a joke.

I have my thirty-second anniversary next week, I'm an American. I've witnessed the NIH and CDC treat us poorly for a long time. Nath has decided it is his turn to treat us poorly and he is doing so with a smile on his face and empathy in his voice. But his statements and actions are cruelty. I don't think the answer is to be silent and focus on getting Nath more money so he can reclassify ME/CFS as a functional disorder.

 

Just to say - I was in no way advocating for silence around the intramural study. There does absolutely need to be a strong rebuttal because, as you say, the likes of Walitt pose an existential threat to the future of ME within the NIH. However, my argument was that the response to the study shouldn't stop at that rebuttal - that there should be a coordinated effort to demand more funding. It also isn't just a case of handing Nath more money - ideally, you'd want a lot of the funding for ME and Long Covid research to go to external academics rather than having it spent all in-house, particularly given that the NIH has such an awful record in-house on ME and LC. Some of the ideas would be:

- Using the study as a starting point to highlight that ME/CFS has been the most underfunded disease relative to its disease burden in the US - that the NIH has only ever allocated ME/CFS a pittance and this has to change. So essentially putting pressure on the NIH to increase its annual funding for ME/CFS

- You could create a campaign around alternative sources of research funding - including the ARPA-H source which is highlighted above

- There's a way of using the parts of the study that suit us - Nath proposed a set of drugs which could be tested on ME patients based on the intramural study, and patient organisations could have asked for there to be follow-up trials on these drugs

 

It seems my post came across far too critical of some of the LC advocacy groups. If that was the case I want to correct that in stating that I think the vast majority of different LC advocacy groups have done and are continuously doing an amazing job and that in particular the PLRC as you have pointed out have truely done a remarkable job, especially on the research side of things and I certainly agree that predominantly due to the efforts of such groups, if the NIH were to spend their money on LC research today it would be better spent then previously. However, whether it would be well spent is an entirely different question and the influence of the PLRC on that can remain rather limited as they have repeatedly pointed out themselves.

We all agree that no one needs to trial melatonin, exercise, light-therapy and what not, but that doesn't mean that trials of IVIG and Ivabradine are the pinnacle of enlightenment. Nor that there is any evidence to suggest that based on the intramural study results certain substances should now be trialled. In that sense I agree with @Jonathan Edwards.

I was in no way trying to suggest that long-term funding was not needed for LC or ME/CFS or that LC advocacy groups have skipped over that step in their demands, when that has been their entire focus for the past 2 years. As everyone I think is aware, you need sufficient funding over a long-time period of at least 5 years, if not decades. Whether that is 300 million, 1 billion or 2 billion per year is possibly debatable and if there is sufficient research of high quality, it is possibly less relevant.

The quality of research is not supposed to improve over time. What you want to see is a consistent sufficiently high quality of research over a long-time frame. That’s very different to an increase in quality over time. A constant quality of research automatically ensures solutions to problems over long time-frames, if they are even solvable. It is arguable that in a new field of research such as Long-Covid an optimisation process ensuring a quality increase over the first couple of renewal of funding rounds is necessary and could be expected when it comes to beaurocratic gargantuans like the NIH. But I'm not too certain that such an optimisation process will naturally provide you with the answers you are looking. The question is more so why anybody was expecting to get answers with the type of research that was conducted and whether those thought processes are still the same once new funding arrives or whether they have simply shifted to LC research that is now viewed as trendy. From what I’ve seen there certainly has been an increase in the quality of LC research, which however isn’t particularly hard when you start of with absolutely useless research, but mostly that increase is so small that it might not be sufficiently large to change things over say a time-frame of 10 years. The question is whether you get to a sufficiently high quality of research over a relatively short period of time, which 10 years certainly is, with such an approach.

I'm not too sure of that. You have to supply research fields with a somewhat continuous funding stream over several years to ensure that clever minds that are genuinely interested in solving a problem have the means to do so, but that doesn’t mean that throwing money at the problem is the way you are getting your results, because you are judging the problem a posteriori and from the outside. We have better treatments for most diseases because knowledge has improved over decades, sometimes continuously and more often than not in leaps and breakthroughs. In other cases there has been no progress because no one was doing the work that would have been necessary for progress or simply becaus it isn't possibly yet. Knowledge improvement does not automatically follow from an increased amount of funding as several scientific disciples in which methodologies have not only remained abismal but sometimes seem to have even gotten worse over time, have shown. The German mathematician Lejeune Dirichlet once said that there was a time in which he considered himself among the 8 leading mathematicians in the world, with the other seven being Gauss. You have to ensure a research environment which raises your chances of people such as Gauss being able to thrive. That requires funding but it requires more than just that and criticising bad research, so that it can improve, can certainly be part of that process. Many researchers are very robust to receiving criticism if it sharpens their senses, especially those that are well aware that their research has little meaning to begin with, which many are very aware of.

The WAFS3 study, the study by Wüst et al, which of course was partially funded by the PLRC and DecodeME are all studies that can provide us with vital clues, none of those required particularly much funding and perhaps apart from the study by Wüst et al, which wouldn’t exist if it wasn’t for the noise LC has been making, just required someone looking at something from a slightly different angle. Good research is not always a product of an abundance of research happening, which automatically results in some of it being useful.

I’m not so sure whether the problem with RECOVER was that they treated LC as if it was an entirely novel entity. If it had been an entirely novel entity RECOVER would still not have yielded any insightful data and on the other hand had it been an entirely novel entity I could think of many ways in which more meaningful research could have been conducted. The problem is not novelty. Of course that assessment suffers from a strong hindsight bias on my behalf, but I think it remains largely true when I look at the predictions made on this forum several years ago. That is not unique to the NIH and certainly true for me as well. Whilst myself and others were hyping up the microclot research, it had already been very apparent to forum members here that the methodological mistakes are that big that the microclot data is inherently useless. If anything I wouldn’t blame it on LC being an entirely novel entity, it more seems to be the usual progress of doing that work you can do for which you know you’ll obtain funding in the knowledge that you’ll receive further grants once that is done. In that case LC research doesn't seem to have changed much, the few valuable leads are largely not being followed-up on precisely because replicating findings and possibly producing null results is not attractive to most, including funding agencies.

I’m not saying that 1 billion for 10 years won’t deliver answers. I want to see 1 billion for 10 years and have been doing as much advocacy as I can in the hope that this goal is achieved. I’m simply stating that it’s naive to assume that, that is the way answers will automatically be delivered because sufficient improvements seems to be occurring within the NIH. I’m not suggesting that LC advocacy groups are that naive and I’m fully aware that it’s far more productive to go down this road than to drown oneself in self-pity and that they are and have changed the NIH's approach already. I completely agree that targeting the NIH is by far the most important, most vital and most sensible target for LC advocacy groups, given the vast amounts of possible funding. But to come back to the earlier analogy, surprisingly many of Gauss’ colleagues that would follow in his footsteps, were Hungarian jews, so called “Martians”. I cannot claim to fully understand the historical reasons for that, but it was certainly not because Hungarian jews dominated global funding sources and it’s more likely that the answer probably lies somewhere in a traditionally strong school of logical reasoning whose reasoning was sharpened over years and where doing grunt work was favoured above publishing something simply to publish. If a post-viral research field can be established via advocacy work and via lots of long-term funding, one may same day look at this as the beginning of a traditionally strong field of research, however what I've seen so far, with my very limited knowledge, seems more of a word salad of MCAS, microclots and other topics that seem trendy, rather then getting the foundations right.

 

Yes - personally, I'm more convinced by $1 billion a year as a political demand and less as an actual figure. It would be an extraordinary amount of money for a field that has historically received no funding - so it would be incredibly messy at first.

My sense of RECOVER is - the NIH were given a billion by Congress, and because they had no idea what Long Covid was and treated it as a novel entity, they decided to do these ridiculously big essentially symptom surveys to actually figure out what the hell this entity was - we're talking about cohorts of 30k-40k ppl. So you end up with an extraordinary mass of data that's basically unusable, and virtually no effort to actually understand what's driving the disease. They only allotted $40 million to outside academics for biomedical research, which imo is probably the biggest miss in the history of these illnesses - if that had been $400 million, you'd have gone a long way to establishing Long Covid as a large and viable field of study.

At this stage, I still do not trust the NIH to spend money well internally - as you say, even the treatment trials are underwhelming (though I do believe ivabradine and IVIG are worth trialling, as is paxlovid). But 4 years in, if they allocated $200 million a year to external sources, you still wouldn't be talking about research that would within 5-6 years provide us all with good treatments, but you'd be talking about research that steadily moved the field forward, ruling out hypotheses, and finding which mechanisms hold water.

I think this is where we differ, but we're not at all miles apart. I would say - research funding is the foundations. Without it nothing can happen, and the reason ME has no treatments while other diseases have treatments is fundamentally about decades of no research funding vs well funded research. However, without a strong methodology, as you say, a lot of that funding could be wasted. Imo the greatest challenge facing Long Covid research is just defining the illness - I'd actually be much more confident that serious breakthroughs would be achieved if ME/CFS research received $300 million a year as opposed to Long Covid research because, yes, ME/CFS probably isn't a singular illness, but it's not the ungodly set of heterogenous conditions that Long Covid represents. If you throw a billion at Long Covid research but there isn't any agreement on which subsets to study, meaning that each study takes a different mishmash of ppl with post-viral fatigue, ME, POTS, MCAS and so on, little will be achieved. I agree with you on the answer to this - you have to strongly criticise bad research, but also do your best to fund small impactful studies that will influence the broader field, as PLRC have done.

 

I’m a bit scared with the rhetoric I often see in long covid communities along the lines of “spend the vast majority on clinical trials”. While I agree a substantial amount should be spent on clinical trials, basic biomedical research is what really has the potential to make substantial progress in the long run.

 

100%, this has also had the NIH running terrified and putting the cart before the horse, spending hundreds of millions on substandard clinical trials without having funded almost any biomedical research.

 

Wow this is a good thread!

 

Same. For the most part I don't think it's worth funding trials without a valid hypothesis. As in none at all. If there's anything that the disaster combo of evidence-based medicine and biopsychosocial ideology has done, it's making a slam dunk case for the complete worthlessness of clinical trials that don't have either of 1) a strong theoretical foundation, 2) overwhelming results from a pilot study that simply can't be ignored, or 3) a compelling reason to reuse existing drugs because they are effective at treating similar problems. And I do mean drugs, non-pharmaceutical trials are about 99.9% worthless in all cases.

This is a basic research problem and it needs solid, basic science. Throwing expensive stuff at a wall to see what sticks is a great way to spend money throwing expensive stuff at a wall, and not much else.

But of course when we look at what the NIH has done with the ME/CFS intramural study, and how RECOVER is going, I don't even know at this point whether they can actually pull this off. Medicine seems to have hit a giant wall that it can't surmount. Existing science can be further developed, mapped areas, but for the most part it doesn't seem to have much capacity to achieve anymore, unless technological progress grants a freebie. Which is likely to happen, so that as long as research continues, this may be how it happens.

This actually needs to be considered: what if medicine is simply not up to the task here with its usual tricks? What other ways and paradigms need to happen to go around the giant wall? Other than us being fucked, which is the most popular option out there.

 

Quote from Nath:

From the excellent Health Rising post just published covering the NIH symposium about the intramural study.

 

I found that post to be quite dismissive and problematic. I’d recommend others to read this which points out the other side of the story:
https://thesicktimes.org/2024/03/19...for-a-retraction-of-the-nih-intramural-study/

 

In other news…
NIH Record Keeping Scandal Emboldens GOP Attacks - The Hill https://thehill.com/policy/healthcare/4697516-nih-record-scandal-gop-attacks-fauci/

The NIH is the top biomedical research grant agency in the world and has historically enjoyed bipartisan support from Congress.

But the COVID-19 pandemic changed that, as Republicans became outraged at efforts to stop the spread of the virus. They’ve argued the agency, and former White House medical adviser Anthony Fauci in particular, has become unaccountable.
​

I really wonder how this kind of stuff will affect ME and LC research.

 

From: NIH MECFS Information List
Date: Mon, Jun 3, 2024
Subject: News from NIH: NINDS Director’s Message on Advancing ME/CFS Research
To: <NIH-MECFS_INFORMATION@list.nih.gov>


Read the latest NINDS Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS https://www.ninds.nih.gov/news-even...l-directors-messages/advancing-research-mecfs