Impacts of the 2024 change in US government on ME/CFS and Long Covid

Message from the moderators:

This thread is for discussing the implications of the policies of the new US government as they relate to ME/CFS and related conditions. Therefore the impact of policies to restrict research grants or to not collect data on certain topics can be discussed here within that frame. Please keep our 'no politics unrelated to the scope of the forum' rule in mind.

If moderators find that the thread goes off-topic but the discussion is still relevant to the scope of the forum, we will considering splitting off posts.
 
What's the best, easiest strategy for keeping info on ME/cfs available? Keeping in mind that we are people with limited energy, bodies full of pain, and brains full of fog, what's easy for us to do, that will keep it as easy as possible for us to access, information that we need?

Published research, guidelines, everything on ME/cfs could potentially be wiped from US dot gov websites and more. All it takes is for someone to note that anything related to this illness was administered under the ghetto of "Women's Health" at the CDC (see Osler's Web).

As for Long COVID, well, we know how seriously they take that.

So in case info on ME/cfs and Long COVID gets wiped, what can we do to keep as much available to us, as easily accessible as possible, on as many aspects of the diseases as possible?

And does this need to be its own thread?

And non-government supported research funding need its own new thread? Or is that just ... a complete ... oh I am so tired of this already.
 
Perhaps not strictly in scope, but an Editorial in The Lancet can always be viewed through the historical lens of PACE and failure to date to retract.

American chaos: standing up for health and medicine

[Trump's] actions domestically and globally are not a measured reappraisal of US priorities. They are a sweeping and damaging attack on the health of the American people and those dependent on US foreign assistance.
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They are also an attack on the health and medical research community. Researchers’ ability to work has been severely limited or stopped altogether. Free speech is restricted. Use of certain terms is banned on US Government websites (and in manuscripts submitted to scientific journals), including “gender”, “transgender”, “LGBT”, and “non-binary”, and a directive has paused the submission of new work for publication for all CDC employees and contractors. At The Lancet, the impact has already been felt. Reviewers are declining and authors are self-censoring. Health institutions may be hesitant to criticise the new administration publicly, but this timidity is a mistake. Trump's actions must be called out for the damage they are doing.
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experiences have crystalised a vision about what health is, and what it can be. That everyone has a right to health. That the health of Americans is contingent on the health of everyone, everywhere—and vice versa. That cooperation and constructive partnerships are vital, and that science has the ability not only to advance our understanding of the world but also to bring people together. That health is a social good, beneficial for societies, a driver of economies, and a path to development. That medicine can help people at their lowest, alleviate suffering, and improve lives. That equity—treating according to need—is fundamental to what medicine is. And that to care is an act not of weakness, but of strength.
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*Exclusions apply.

The medical and scientific communities must come together and stand up for this vision. In that spirit, The Lancet will be a focal point of accountability over the next 4 years, monitoring and reviewing the actions of the US Government and the consequences of its decisions for health.
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They sure think very highly of themselves. And take themselves very seriously. While not actually taking their job seriously. And having a comically fantastic version of who they are and what they do. Rings familiar.

IMO it's pretty much guaranteed that biopsychosocial will be the belle of the ball for the next 4 years. Reaping. Sowing. Getting what they want and utterly mad about it. Also rings familiar.
 
https://twitter.com/user/status/1888014819573514432


“Last year, $9B of the $35B that the National Institutes of Health (NIH) granted for research was used for administrative overhead, what is known as “indirect costs.” Today, NIH lowered the maximum indirect cost rate research institutions can charge the government to 15%, above what many major foundations allow and much lower than the 60%+ that some institutions charge the government today. This change will save more than $4B a year effective immediately.”


That’s a pretty huge reduction in the maximum indirect rate allowed.
 
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This is a pretty good explainer

https://twitter.com/user/status/1888053741347307847


Here is how indirects work. A portion of a scientist’s NIH grant goes to the university—not as a slush fund, but mostly to support research. Some of it even comes back to the researcher. Why? Because grants cover specific expenses, and science often requires general funds.

For example, if a centrifuge breaks and wasn’t budgeted in the grant, it can’t be replaced with grant funds—even if the research depends on it. Indirects cover such essential costs.

More broadly, indirects fund lab operations—electricity, security, maintenance—and help hire new researchers. They also support early-stage projects not yet ready for grants.

Is some of this money wasted? Sure. But funding cancer, infectious disease, and neuroscience research is hardly where DEI ideology takes hold.
 
The change looks very sensible to me as a researcher. We used to have a system where infrastructure was paid in a regular grant to the institution, which made sense. Chopping this up into 'indirect' surcharges for individual grants is a pretty stupid way to do things and increases the focus on short term income goals.

And huge amounts are now wasted on the unnecessary administration of chopping all the costs up into individual grant accounts.

This is all empire politics. It may be time it was brought out into the open.
 
Trish said:
Did the infrastructure grant apply to US universities?
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Historically, the infrastructure of universities was paid for by legacies, student fees and long term government investment both sides of the Atlantic I am pretty sure. The main shift to all research costs being borne by individual grants occurred in the 1970-1990 period but by 2000 on-costs of around 25% started rising to their current levels.

The change was associated with an abandonment of long term technical staff contracts. In 1980 I did my doctorate supported by departmental staff and other resources. That has all gone and I think it is much the same UK, USA and elsewhere.
 
Jonathan Edwards said:
The change looks very sensible to me as a researcher.
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There are reasonable debates about how "infrastructure" should be funded. It is insane to cause such havoc and chaos and major financial damage at every US research university, including mine, at one fell swoop in this manner, depriving them of many millions in operating costs, starting immediately--or at least it's insane if you don't want to cause havoc and chaos and major financial damage at every major American research university.
 
https://twitter.com/user/status/1888264443974631569


The indiscriminate and ill-conceived slashing of indirects by the @NIH yesterday must be amended if want to restore America’s leadership role biomedical research. 15% simply isn’t enough for institutions to provide the basic infrastructure needed to run a successful lab. I say this as someone who has been and remains deeply critical of the NIH, its funding system and of the ways universities are structured and spend money. We would all benefit from a genuine reexamination of how and to what @NIH funds are allocated, and I remain optimistic that once the dust settles and new NIH leadership is in place that this is what will happen and this hack job by people who don’t understand or care about research will be forgotten.

And I’m sorry but I can’t help but laugh at the people who are demanding a full-throated defense of the current indirect levels. Nearly every PI I’ve known for my entire career has complained about excessive indirect rates. This is mostly because, despite their importance, even most PIs haven’t bothered to actually understand them, and because they don’t FEEL that universities are actually spending the money to support their research. Whether they are or not nobody really knows because in the typically Byzantine maze of university budgets it’s often very hard to figure out.

There are also lots of actual shenanigans that go on especially at places with the highest indirect rates to use funds to build out the institution and increase its power rather than to directly support funded research projects. And anyone who says administrative bloat at universities isn’t real and partially fueled by indirects is either blind or part of the bloat.

So let’s get organized to have an actual constructive response to this firebomb. Scientists need to advocate for what is best for research - and we have to do it ourselves because the institutions that claim to represent us - universities and scientific societies in particular - have their own goals that often do not align with ours.

We also have to remember that grants are not an entitlement. We are not owed anything. If we want to continue benefiting from the public support we have always enjoyed, we have to show the public and their representatives - even ones we might not always agree with - that we’re spending their money wisely.
 
Jaybee00 said:
NIH cuts billions of dollars in biomedical funding, effective immediately
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Quote from NYTimes story (I cancelled my W Post subscription):
'“I think it’s going to destroy research universities in the short term, and I don’t know after that,” said Dr. David A. Baltrus, a University of Arizona associate professor whose lab is developing antibiotics for crops. “They rely on the money. They budget for the money. The universities were making decisions expecting the money to be there.”

'Dr. Baltrus said that his research is focused on efforts such as keeping E. coli bacteria out of crops like sprouts and lettuce. He said the policy change would force his university to make cuts to support staff and overhead.'

To Jonathan's point, whether we should have a system in which they should be relying on that money can be debated. That's not what's happening.
 
dave30th said:
It is insane to cause such havoc and chaos and major financial damage at every US research university, including mine, at one fell swoop in this manner, depriving them of many millions in operating costs, starting immediately--or at least it's insane if you don't want to cause havoc and chaos and major financial damage at every major American research university.
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Indeed, Dvid, but I am a cynical old toad, as you know.
 
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