USA: NIH National Institutes of Health news

https://twitter.com/user/status/1790920172074578097

 

Sharing today from NIAID Director

'Research!America Alliance Discussion with Dr. Jeanne Marrazzo, Director of the NIAID ‘

Dr. Marrazzo (14 minute mark): "Thinking forward what I would really like to do and this is really premature, it's just in the works, so you're getting a preview - is to think more carefully about how we could work, probably with the neurology folks, to design a really integrated hypothesis-driven strategy for post-viral infectious inflammatory syndromes. That would be like Long COVID & Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). There's probably a lot of commonality. We know there's clearly immune dysregulation after these infections, we don't really understand them, and you could include Lyme Disease frankly in that. Again, this is only my 8th month, so still getting a handle on all this, but I'd really like to see that. There is a clear need for that from the community standpoint and from a provider standpoint, who are really struggling to take care of these patients.”

 

Recording when ME/CFS Research Roadmap was discussed during the National Advisory Neurological Disorders and Stroke (NANDS) Council meeting on Wed, May 15.

2:22:06-3:27:20

https://videocast.nih.gov/watch=54421

 

“Biden’s got a plan to protect science from Trump” - Politico
https://www.politico.com/news/2024/05/27/biden-plan-protect-science-trump-00160001

Somewhat interesting read about a new NIH office meant to prevent political interfering and how Republicans have pushed NIH and the CDC to minimise covid.

Trump officials pressured the CDC to change language in a report about pediatric Covid cases in 2020. In the lead up to the 2020 election, Trump advisers mounted a pressure campaign on the FDA to reauthorize the unproven Covid treatment hydroxychloroquine.

At NIH, Trump repeatedly hinted that he wanted to fire Fauci over his handling of the pandemic.​

 

On in just over 2.5 hours wherever you are in the world.
#MEcfs #PwME #CFS

 

Avi Nath doubled down on criticizing patients for being critical.

Jeannette Burmeister tweeted about it.
https://twitter.com/user/status/1795525286127374802

Jeannette Burmeister @JKBurmeister

5/28/24 NIH Advocacy call: Nath continued his intimidation and vilification campaign telling advocates that they if they continue to be critical of intramural ME study, future ME research is at risk. Inspector General & Congress need to step in here

Jeannette Burmeister @JKBurmeister

A high-ranking government researcher & bureaucrat trying to silence a pt group that his agency has neglected & harmed for decades. That’s what it's come to at NIH. He called intramural study "best study ever done" (twice), and I'm afraid he actually believes that.

 

Reminds me of Wessley calling the PACE trial “a thing of beauty” (https://www.nationalelfservice.net/...syndrome-choppy-seas-but-a-prosperous-voyage/)

 

Avindra Nath's ME Power point includes Cognitive Therapy for Brain Fog and lists 'Functional Disorders' as a symptom.


Tweet content:
'Did you & other #pwme see Dr. Avi Nath’s May 6, 2024 PowerPoint slide on which he included “functional disorders” as his final bullet point? Why did NIH’s Dr. Nath include “functional disorders” when discussing M.E.?
#Myalgic Encephalomyelitis
Cc @davidtuller1'

 

I think it's actually really important to listen to Nath here. Good advocacy isn't necessarily about doing what is right and moral - it's about doing what most effectively gets you what you want.

In my view several things are true at once. The intramural study was a complete mess. Walitt poses a huge threat to the ME community. The leaders of the study have responded very poorly to patient criticism. And yet at the same time - the response of the patient community to the study has been somewhat self-defeating.

The patient community seems to drawn from the PACE trial playbook in its response to the intramural study - very impressive work has been done picking the study apart in great deal, and researchers have been criticised based on that analysis. But there are serious downsides to this approach.

Academics are used to operating in a very collegial atmosphere, which means they're often bad at taking criticism, particularly when that criticism is expressed quite stridently and comes from non-academics. And that's the dynamic that's played out since the publication of the study. The criticism is just not getting through to Nath et al - he, alongside others, is doubling down further and further and increasingly interpreting any pushback through the lens of "these are difficult patient activists." Put simply, he's stopped listening, and if that's true of him, it's probably true of many others within the NIH. All of this also has the effect of pushing academics away - which is what Nath probably means when he says that future ME research is at risk. It probably makes academics not want to study ME in the future, which is a big problem when ME - and post-viral illnesses more generally - needs to be established as a large and legitimate field of study.

It's a very difficult equation - on the one hand, these academics absolutely deserve criticism, on the other hand, criticising them doesn't necessarily lead to anything productive.

I've said this before, but I think the ME community really needs to take a leaf from Long Covid advocacy in terms of responding to the intramural study. The Long Covid community basically doesn't respond to bad studies - maybe apart from putting out a few tweets. The focus is almost entirely on research funding and the more political side of things. You have different groups working on different funding sources - you have groups working on a) more funding directly from the NIH, b) more funding from the 2025 budget, and c) a bill that would provide $1 billion in research funding a year. And I think this focus on funding is correct - rebutting individual studies can keep the BPS cabal at check, but it'll never lead to a lasting victory. The only thing that actually change the state of play is large-scale funding. Even if it's not spent very well at first, over time consistent funding would establish post-viral illnesses as a legitimate field of study, it would gradually elucidate ME and Long Covid's underlying pathology, and it would ultimately lead to treatments.

There did need to be a more academic and scientific response to the intramural study - but not at the exclusion of the more political side of things, and also the more political side of things sends a very different message to researchers. Rather than solely criticising them, which can have the effect of pushing them away, if your demand is instead that the intramural study is followed up with lots of further research, you're signaling that you want to work with researchers (which is tricky when Walitt is in the picture of course).

I'd have done this on several different fronts. Nath mentioned above 5-6 potential drugs which could be trialled based on the results from the intramural study. I'd have put a lot of pressure on the NIH to trial these drugs. I would also have made the focal point of the response to the study that ME has received just $15 million a year, and that the NIH gives the average disease $200 million. If ME received closer to $200 million, you'd end up with a situation more like Long Covid research - where, yes, there would be bad studies pushing a psychological angle, but they wouldn't particularly matter in the grand scheme of things because far more good research would be going on at the same time.

 

I agree with you. Everything you say is spot on, and you could see the hurt / frustration in his facial expression. He simply is not used to being criticized and is not hearing us at all, or understanding our POV. They have already moved on and are going to focus on RECOVER. We need to move on too and advocate for ME cohorts in RECOVER drug trials. It will be self defeating to continue to harp on the failures of the deep phenotyping study. I think anyway it’s clear from Naths own presentations that the effort preference work is not the focus. And as RECOVER continues, it will just be forgotten about.

 

This is an absolutely fantastic idea - some of the drug trials are quite good (ivabradine, IVIG), and the NIH over the past year has received an additional $200 million for these trials. It also puts things into perspective. The intramural study was just $8 million, which is nothing in the context of medical research. Having ME involved in research totaling hundreds of millions is exactly what we need.

 

It may be nothing compared to other diseases but that’s more than half the yearly NIH budget for ME/CFS. And as far as I know it is either the most or second most expensive study done on ME. (not sure how it compares to PACE, currency coverted and inflation adjusted)

 

Certainly - I don’t want to completely dismiss the importance of this study.

My argument boils down to - if this study was half the NIH’s annual budget for ME, the much bigger problem is that annual budget rather than the study. So advocacy should focus on the former rather than the latter, and focusing on the latter hasn’t been massively productive.

 

Agreed. Just don’t think it means we shouldn’t criticise preoblematic research either. Though I agree that it’s often unfortunately having a counterproductive effect, and we need to reflect on what strategies work and what strategies are seen as “harassment” or “militant patients” whether wrongly or not.

 

Exactly. I think there are cases where strident criticism of researchers is justified and also works very well - for instance following the PACE trial. More generally I’m much more OK with strongly pushing back against BPS researchers in Europe because these are people who are working directly against us.

However the NIH demands a very different response. You’re talking about the largest global funder of biomedical research. It’s an institution that you have to work with, however infuriating it is and however much it lets you down.