Dr. Anthony Fauci on Long Covid and ME/CFS

https://emilymendenhall.substack.com/p/exclusive-interview-with-dr-anthony

With medical anthropologist Dr. Emily Mendenhall.

As scientists delve deeper into Long Covid, the mysterious post-viral syndrome that has plagued thousands of people long after their initial infections, I sat down with Dr. Fauci to hear his thoughts on post-viral syndromes, and what we should be thinking about as more and more people who develop COVID-19 find themselves still sick, months later.

I have been asked, if I were to do it over again now, what would I consider to be a “hot” field in my arena at the interface between immunology and infectious diseases?
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Post-acute sequelae of infections have fascinated me from my very early years at the NIH -- and when I say early years, I came to the NIH 54 years ago.
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Given our biomedical research funding system, Emily, you know, people go to things that are almost sure bets for a result. What you need is young, imaginative, energetic investigators. But the system is geared that at the end of a certain time, where is your Nature paper? Where is your Cell paper? Where is your New England Journal of Medicinepaper? And if you say I do not have it, I am working on something, I am working on something, you are not going to get funded next time.
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So Long COVID really needs one of those long-range funding mechanisms like we had in the intramural program NIAID where we were able to work on things for years. If it was clear, you were doing good work, you were not pressured or feared that you were going to lose your job if you did not produce a result. So, this is a long, long-range project that should get long, long-range funding.
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I thought I'd quote these posts by @Kalliope and @ahimsa as they are in line with the above publication and add some more context.

Kalliope said:
Scientific American Is Long COVID Real? Here Is What Tony Fauci Told Me

quote:

Fauci told me, “This was before chronic fatigue syndrome ... even had a name.... [People were very sick] following a variety of what they perceived as viral infections.” He said that back then we didn’t have the diagnostics that we do now and that “there would be things about their demeanor and their ability to function, which were markedly compromised for variable periods of time.”

I found this off-the-cuff comment to be striking because it meant that ME/CFS activists have been struggling for at least five decades to get recognition for their disabilities despite having what medical anthropologist Emily Lim Rogers described in a 2022 paper as the “dual-pronged challenge” of people with ME/CFS confronting “stigma caused by its lack of biological verification and societal acceptance” and doing so “in bodies that are exhausted.”

Fauci said, however, that he and other infectious disease physician-scientists were soon swooped up into the still-ongoing global emergency of HIV/AIDS, leaving relatively less time and resources to devote to chronic, debilitating but non-fatal conditions. These illnesses frequently don’t get the attention they deserve and it leaves many people suffering without the possibility of a diagnosis, let alone a cure.


https://www.scientificamerican.com/article/is-long-covid-real-here-is-what-tony-fauci-told-me/
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ahimsa said:
Thanks for posting that link @Kalliope

I know that media outlets love clickbait so I should not be surprised by the "Is it real?" framing. But it's so annoying.

How a subject is framed makes a huge difference in how it is discussed. If you put that old idea in someone's mind it will compete with all the new information that's being presented (e.g., don't think of a pink elephant).

It's not much different from those old articles in US publications that used to say,

"Chronic Fatigue Syndrome, once called 'Yuppie Flu' ..."​

Adding that line does not help to refute the old label. It needlessly introduces stigma. ("Hmm, this is controversial, some people don't think it's real...")

Same thing with "Is it real?" in this headline.

I will note that on the author's substack there is a completely different title - Exclusive Interview with Dr. Anthony Fauci on his Perspectives on Long Covid:

https://emilymendenhall.substack.com/p/exclusive-interview-with-dr-anthony
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Just adding a quote from the article:

Former chief medical advisor to the president, Anthony Fauci is one doctor who sees the opportunity here. I spoke with him, and in his precise, careful fashion, he laid out a road map for how to approach ME/CFS.

First, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions.

Second, make sure you have a very strict and agreed-upon definition of what long COVID constitutes: symptoms must be there for at least six months, and a level of significant disability must be documented.

Once you have your population, then cast a wide net into possible avenues of dysregulation
 
How many decades ago was that now?

I don't have the same opinions on every subject from that long ago time that I have now.

I have learned. And changed. And I hope I might be forgiven for any faulty ideas I might have held way back when.

I for one am glad that Fauci speaks out today, and has for some time, about the perils of our illness.
 
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Louie41 said:
I have learned. And changed. And I hope I might be forgiven for any faulty ideas I might have held way back when.

I for one am glad that Fauci speaks out today, and has for some time, about the perils of our illness.
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Yes, me too. But when someone in such a position of influence changes their mind about something which affects so many people so profoundly, I think we are entitled to ask them to admit that they were wrong and to apologise. I would be happy to accept a sincere apology from anyone who understands what they have got wrong and how their misunderstanding has affected people’s lives.
 
Second, make sure you have a very strict and agreed-upon definition of what long COVID constitutes:

I am far more concerned about overall methodological quality.

I don't think we are at the point where definitions can be improved much more, at this time. The way to better definitions is more evidence produced by good methodology. It will sort out the definition, including any subgroups, better than any further debate about the definition, based on the current, often poor quality, evidence.
 
Robert 1973 said:
Yes, me too. But when someone in such a position of influence changes their mind about something which affects so many people so profoundly, I think we are entitled to ask them to admit that they were wrong and to apologise. I would be happy to accept a sincere apology from anyone who understands what they have got wrong and how their misunderstanding has affected people’s lives.
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He can apologize every day and twice on Sunday and I wouldn't care. I would rather have him use his position of influence to effect change.
 
I think a public apology that specifies what they got wrong and what they think should happen next from someone so prominent in the world of medical research and care is important as an example to others who should also consider whether they have been and maybe still are getting it wrong about ME/CFS and LC. And to funding bodies as an indicator that he thinks we need a lot more and better research.
 
Trish said:
I think a public apology that specifies what they got wrong and what they think should happen next from someone so prominent in the world of medical research and care is important as an example to others who should also consider whether they have been and maybe still are getting it wrong about ME/CFS and LC. And to funding bodies as an indicator that he thinks we need a lot more and better research.
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I agree that is what is needed as a starting point. It allows others to understand that showing humility and noting that things move on and people grow and can step up to the come to Jesus moment is an important example. Instead of feeling they need to keep burying themselves in being defensive of what they did or believed.

THe record can't be changed and grown-up conversations can't be had whilst some won't do anything other than stick their fingers in their ears. You acknowledge, apologise and move past. I've never understood those who can't or won't do it, because it never made any sense and in a way just makes whatever issue it is much bigger. UNless you think you can delay it forever. Then I've realised of recent years just what a huge proportion of people spend their entire being obsessed with not admitting 'being wrong' and fearful of that. So even a whiff, even if they are just being sensitive insinuiating that, of that being suggested and you get both barrels as if you've attacked them.

Ironic for an area that suggests the area is science because the literature debates ideas back and forth. It doesn't work if the area with all of the power not only hoards that but also becomes incapable of changing their mind or drawing a line under dead-ends. SO yes doing so is good leadership.

The consultation on the interim plan suggesting we need to compromise and give wording suggesting 'both sides' says it all really, where in essence it claims that requires us to take the blame in order for people to carry on doing the same and apparently be less antagonistic towards us
 
Is anyone concerned that Fauci says in laying out a road map for how to approach ME/CFS, ‘first, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions’?

This researcher who seems to work with Professor Akiko Iwasaki at Yale on Twitter says:

“Dr. Fauci is now recommending that non-COVID patients be excluded from research! This is a huge slap in the face to a group of patients that have spent decades begging the medical system to treat their debilitating disease.

Is it generally good to minimize confounding variables in research? Absolutely! But it also doesn't justify excluding a significant % of the patient population from your research agenda. There are ways to account for this in study design, and not applying them is also a choice.

Just like we can't assume that all people with LC will develop ME, we also can't assume that the LC-ME subtype involves the same mechanism as non-COVID ME.

***This is why both patient populations MUST be studied together, whenever possible, to facilitate direct comparisons.***

To my fellow researchers: the current focus on LC is also our opportunity to begin righting the wrongs of decades of medical neglect. These patients and advocates have laid the groundwork for us, and now WE need to do the work to be better.

We MUST do better than this.”

https://twitter.com/user/status/1743709734144733325
 

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bobbler said:
The consultation on the interim plan suggesting we need to compromise and give wording suggesting 'both sides' says it all really, where in essence it claims that requires us to take the blame in order for people to carry on doing the same and apparently be less antagonistic towards us
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I’ve missed this. Can someone please point me to the relevant quote and thread?
 
anniekim said:
Is anyone concerned that Fauci says in laying out a road map for how to approach ME/CFS, ‘first, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions’?

This researcher who seems to work with Professor Akiko Iwasaki at Yale on Twitter says:

“Dr. Fauci is now recommending that non-COVID patients be excluded from research! This is a huge slap in the face to a group of patients that have spent decades begging the medical system to treat their debilitating disease.

Is it generally good to minimize confounding variables in research? Absolutely! But it also doesn't justify excluding a significant % of the patient population from your research agenda. There are ways to account for this in study design, and not applying them is also a choice.

Just like we can't assume that all people with LC will develop ME, we also can't assume that the LC-ME subtype involves the same mechanism as non-COVID ME.

***This is why both patient populations MUST be studied together, whenever possible, to facilitate direct comparisons.***

To my fellow researchers: the current focus on LC is also our opportunity to begin righting the wrongs of decades of medical neglect. These patients and advocates have laid the groundwork for us, and now WE need to do the work to be better.

We MUST do better than this.”

https://twitter.com/user/status/1743709734144733325
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Truth and reconciliation first requires truth. At the very least an insistence on the inclusion of M.E. cohorts in research going forward.
 
anniekim said:
Is anyone concerned that Fauci says in laying out a road map for how to approach ME/CFS, ‘first, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions’?
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Yes, and not only for the slap in the face, but because it will make the research worse off and take longer to achieve anything for a terrible reason.

COVID is not the only pathogen that causes this. This is known, and it means something. It means that there is something in common to several pathogens, and possibly some chemicals, that are the main factor, most likely in the immune response. Limiting research to a single pathogen will make it impossible to find those patterns, it would be like obsessively studying only the latest crime scene of a serial killer and ignoring all the other murders. This is the surest way to miss out on important clues.

I really don't know on what basis Fauci is saying this anyway, that window has passed by completely. In the very first months it would have been smart, but actually COVID is now a less viable pathogen to study because there are almost no controls left, whereas for all of the other pathogens there usually are plenty of controls left.

Likely this comes from his background in AIDS research, where the one and only virus is everything. This is clearly not the case here, so it's just bizarre to apply the wrong lessons to a different failure, especially when no lessons were actually learned from the failure of AIDS.
 
Fauci isn't some random member of the public. He was the director of NIAID from 1984 until like two minutes ago. It's ok to change your mind and evolve your positions over time. We all do. It's not ok to pretend like you didn't just spend 40 years engaging in minimisation, denial and ridicule of us.
 
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