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.
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.