The NIH should create an Office of Infection-Associated Chronic Illness Research - proposed by the American Association of Scientists, 2024.

STAT
Inside a push to create an NIH office for post-infection chronic illness

When the White House released President Biden’s 2025 budget requests this week, funding for biomedical research was stagnant. The more conservative wishlist from the president acknowledges a reduced appetite in Congress for non-defense government spending.

But some disease groups, along with their research allies, are undeterred. A growing number are calling for increased research funding and the creation of a new body at the National Institutes of Health to study chronic conditions that spring from infections.

The pitch comes on the heels of a major jump in awareness of post-infection chronic conditions, like long Covid, during the pandemic. And while it could go nowhere — several bureaucratic hoops must be jumped — the proposal concretizes some of the concerns and demands of tens of thousands of Americans who have little-understood, little-investigated conditions.

This group of diseases has by and large received little attention or funding in decades past — save for long Covid, which is relatively well-heeled at the moment through the RECOVER trial. Other conditions, including chronic Lyme, mast cell activation syndrome, Ehlers-Danlos syndrome, POTS, and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have mostly been ignored. And although not all are thought to be caused by infections, many share symptoms (notably, life-altering fatigue) and lack effective treatments, advocates say.

On Friday, the Federation of American Scientists released a white paper calling for the creation of the new NIH office. The authors cite economic, practical and moral justifications, arguing that these conditions affect millions of Americans in total, but don’t fit neatly into the existing structure, which is often siloed by organ or disease process.

...Read further at:
https://www.statnews.com/2024/03/15/nih-office-for-chronic-disease-post-infections-long-covid/

 

Merged thread

Revolutionizing Research And Treatments For Infection-Associated Chronic Diseases
https://fas.org/publication/revolutionizing-research-chronic-diseases/
By: Ryan Prior

The National Institutes of Health should create an Office of Infection-Associated Chronic Illness Research. Reporting directly to the NIH Director, the Office would provide a timely and urgently needed command center for prioritizing innovative research across a group of complex, chronic conditions that are all known to be downstream effects of viral and bacterial infections. These include Long Covid and many others. The Office of IACIR should champion transformative, catalytic research that cuts across multiple institutes and centers.

The Covid-19 pandemic has proven to be a massive disabling event that has shined a bright and historic light on infection-associated illnesses. As many as 1 in 5 adults develops a new health condition in the aftermath of Covid, and for many, the condition could be lifelong. This should not come as a surprise. For decades, millions of sufferers have experienced debilitating illness, gaslighting, misunderstanding, lack of insurance coverage, disability, and no FDA-approved treatment options. In alignment with President Biden’s National Research Action Plan for Long Covid, the Office should pursue a two-pronged approach that includes pioneering next-generation diagnostics while also fast-tracking patient-centered clinical trials for repurposed drugs. The Office would spur creation of a world in which all people with an infection-associated chronic illness have access to a timely diagnosis and effective treatments.

 

This badly needs to happen and is a good foundation. But even seeing this plan looking at 5 years before it could realistically produce any results fills me with despair.

 

Should US PWME be careful what they wish for?

I have no idea what pioneering next generation means (except maybe that nobody else has any idea yet either) but might the diagnostics already be in the pipeline with fMRI scans picking up that special effort preference? And might the treatment repurposing already be in the pipeline in the form of checkpoint inhibitors for no obvious reason?

I don't see the NIH setting up another office in competition with Dr Walitt.

 

CDC reports 6.8% of all American adults are currently experiencing LC. Which equates to 17.6 million. (Plus all the other post-infection conditions)

 

Money can do wonders sometimes, and $1b/yr could go a long way. Frankly, with the programs spread out all over NIH (trans-NIH workgroup, intramural study programs, NIAID, etc.) and CDC, I have no idea if there is a single command center. I think it'll do good to consolidate them all into one with a specific charter and give them billions to solve ME/CFS.

 

It can also be ruinous for us if the likes of Walitt get it.

 

I still think this is something that will inevitably happen. If not before a breakthrough, then after. It's too different from the rest of medicine, it has no other place elsewhere and needs a break from the old sclerotic ways.

IMO the best way to go would be to fold the AIDS institute into a broader mandate. But it is critical that it be overseen by patients and happen in a transparent process. The kind that usually does not happen, and where the AIDS institute is the only example of its kind.

Our detractors will always find ways to fuck with us, I don't think this would add to their toolkit, in fact would take a lot from it. Psychosomatic ideology thrives in ignorance and secrecy, and cannot withstand scrutiny. So the conditions have to be right, but that's always the case.

 

I must confess that when reading the Statnews article it occured to me that I might be looking at a political move: allow the call for a NIH office to get attention, then "listening to the patients" and magnanimously granting the request, funneling it towards the public/official launch of Walitt's unit, or giving it a firm place within. But that's hopefully just my cynicism regarding a party that has as of yet not been exactly trustworthy (The NIH's history and NIH's "Team Tired").

I just read the call for an IACIR from the Federation of American Scientists, and at first glance it looks good. My only problem with it is, well, that it is the NIH that should be base and lead for its execution. Given the recent "deep phenotyping" debacle, where the NIH appointed to a key position a researcher who has a long and constant track record of considering ME/CFS a subjective perception disorder, and whose paper reads like he used the study to continue his search for a biological explanation for his psychosomatic theory, I'm not sure if the NIH, attitude- and knowledgewise, is ready to house and lead such an endeavor. I hope I'm wrong, but then again, they gave that same researcher a portfolio of GWI and Long Covid as well, which he, aligning with his psychosomatic views, considers "aversive symptoms after infection".

I think it's a project to cheer on and support, under the condition that a firm eye is kept on keeping psychosomatics and Walitt out the door. I expect Nath (who sat on the committee of NASEM's workshop Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors) and Walitt will object and act like this is somehow unfair, but that's just the standard complaint the psychosomatic movement throws up, and a fallacy.

 

Is technology making it difficult to muzzle potential progress in several discreet diseases, housed historically in separate silos? Easier to monitor and limit innovation, and eyes, if all the problems are interred together?

This, theoretically, would be doubly important because of churn, and with a new generation of researchers appearing.

ETA: My cynicism might be reduced if patients can oversee. But this may itself be problematic if patient is pitted against patient.

Extra ETA: Above appallingly alliterative, albeit not knowingly.

 

This group of diseases has by and large received little attention or funding in decades past — save for long Covid, which is relatively well-heeled at the moment through the RECOVER trial. Other conditions, including chronic Lyme, mast cell activation syndrome, Ehlers-Danlos syndrome, POTS, and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have mostly been ignored.

I see a confusion here that could be very unhelpful.

The call is for research into infection-associated illness.
Why then drag in a whole lot of other things that have nothing much in common other than that they are perceived to be ignored and (nudge-nudge, wink-wink) have been associated with a BPS interpretation? The only people I can see wanting to pick up on this are exactly the people who have already at NIH - the alternative medicine BPS department for dumping stuff nobody else wants to get involved with.

EDS has nothing to do with infection and probably nothing to do with ME or fatigue.
MCAS probably isn't a meaningful diagnosis except perhaps for some rare genetic cases.
POTS is a mess of a diagnosis and probably doesn't have much to do with ME or fatigue either in cases where there is a meaningfully specific haemodynamic abnormality.

I also see a danger in trying to capitalise too much on Long Covid. Most LC is probably like post EBV fatigue - lasting months but not more. It may tell us something very important but it should not be confused with the problem of persistent ME which I suspect involves something different or extra.

Focus LC could easily lead to a perception that the problem is self-limiting and allow it to be shunted back to rehab. Capitalising on LC for ME specifically does make some sense but it needs to be remembered that the call is a bit like asking for a French Café Créme in an Italian restaurant. There is no knowing what you will get but it is likely to be an Italian conception - maybe expresso with a glass of whipped cream on the side.

 

Chronic Lyme seems out of place in so much as there has been an ongoing NIH clinical study into it since 1999 or there abouts. That's a quarter of a century of supposed parsing. So it's - on paper - clearly been investigated at length.

Which suggests it's stalled at best, or become political debris. It's certainly been re-branded (from chronic Lyme to PTLDS).

This would seem to advocate for a new group. Such a group might wrestle control away from anyone who may have an interest in maintaining things as they have been. It might inject some objectivity and ingenuity into the investigation.

There is strength, too, in numbers. All these misunderstood and castigated diseases grouped together.

I worry about intent, though. I do not trust some within the NIH.

 

to me, nih's history forces the conclusion that they cannot be trusted.

 

Yea recall the outcome in Germany - roughly along these lines - "poorly understood diseases - unknown cause (etiology) & no treatments - with a high disease burden"
I think the German approach was actually better than the EU's.
@ME/CFS Skeptic

 

https://www.lymedisease.org/ryan-prior-new-nih-office-fas/

 

If only it was so easy!

Why not set up an institute for writing Schubert's greatest piano sonata (the one he didn't write cos he died). All you need is robust funding, infrastructural resources...

Yeah. What if John Cage is put in charge?

 

Can't see how it would make anything worse, honestly. Although you could take that idea & run with it.

Alternately, I'd suggest GG Allin.

 

I can't really see a future where there isn't one such institute and medical specialty. Even if it happens after the breakthrough that enables it.

How do you see it fitting otherwise? It straddles too many specialties. Without a home, it's too hard to get things working.

 

Lupus is under three or four medical specialities. It gets a relatively high level of research funding because medics find it interesting. Lupus research is done all over, without a lupus institute.

My work on rheumatoid wasn't in a special rheumatoid institute. I had a small group and we made good progress.

What is needed is a biological lead that people can do some intelligent work on. At present it is very hard to know what to pursue but I think that is likely to change within a year or so. Once there is a lead every Tom Dick and Harry in academic medicine will be putting grants in. One of those - maybe Dick - will be bright and see how to unlock the real story, maybe in some backwater university, maybe in a well known one, but could be anywhere.

The 'set up an institute' approach has become the dominant approach since 2000. And since 2000 medical science productivity has plummeted. In most fields nothing has progressed. Twenty five years ago people were actively talking of curing diabetes long term. What happened to that? And so on. Science don't work like that.