Dr. Anthony Fauci on Long Covid and ME/CFS

[Sly Saint]

This thread is the result of the merging of a number of threads

"Dr. Anthony Fauci discusses some of the public health and scientific challenges presented by COVID-19. This talk was Dr. Fauci's keynote presentation at Penn Medicine's Cancer and COVID-19 virtual conference on September 30, 2020."

 

[Kalliope]

At 14.13 he says:
The other thing that's perplexing, new, and we're learning about, is what some people call "lang haulers". Mainly people who clear the virus. So they are virologically quote "cured" of the disease, but for weeks and even months and maybe longer, they have lingering symptomatology that can be muscle aches, muscle pains, fever, what people refer to as brain fog, or an inability to focus or concentrate. These are things that in some respects resemble Myalgic Encephalopathy or Chronic Fatigue Syndrome, although it is clearly different from that.

 

[chrisb]

In what ways is it different. ? Apart obviously from the fact that some attribute the cause to Covid-19 and others cannot?

Or is it that post covid is not of psychiatric origin?

We remember.

 

[rvallee]

These are things that in some respects resemble Myalgic Encephalopathy or Chronic Fatigue Syndrome, although it is clearly different from that.

That assertion would carry more weight if we knew what ME is. Obviously there are additional aspects, though it's not clear what differences they add up to. Maybe none. Probably not but we literally have no way of knowing because of willful ignorance going back decades and still the current planned course.

The dysautonomia is clearly very similar. As are the fatigue, headaches and neurological symptoms. And obviously the exertion intolerance. But none of those have any more explanation than any other case of ME, which is the whole thing that has defined ME, all because of willful ignorance, denial and people straight up making stuff up to fill ignorance with their own preferred pet explanation. For one thing we know more about COVID because of severe hospitalized patients who receive more attention each week than all ME patients have for all history. We can't know what people never bothered to check.

It's this ignorance that is at fault here. We know nothing and so have nothing to compare to because people chose not to know anything and now we have nothing to compare to because nobody took sufficient notes at the time. Because people failed at their job. And we clearly will not know any more until people actually begin the work and this is not happening right now, even coming straight from the very people who carry the most weight in making that decision, a decision Fauci continues to make to this day and for the foreseeable future.

 

[EndME]

Anthony Fauci on becoming the ‘devil’ and a warning for his successor

In an interview with Science Anthony Fauci reviews his career and states that he believes that ME/CFS is currently the most interesting disease to study for him. Of course that has not resulted in it receiving adequate funding, the opposite has been the case, especially under his reign, but it seems Long Covid might have changed his mind.

Have we found the advocate we have always been looking for, is this an interview from a parallel universe or is it a reflection of his own neglect and underfunding now that he doesn't have to back up his words by action anymore as he is out of office?


Q: Let’s say you were starting your research career today. What would you study?
A: I keep getting fascinated by autoimmune diseases that seem to get triggered by an aberrant stimulation of the immune system. More than 40 years ago, when I was the physician for the NIH, I was struck by a subset of patients who would come in usually following a viral infection and they didn’t know what it was because no one ever cultured it. They would say, “Something is wrong, I just don’t feel right. I get tired twice as easy, I feel achy, my rhythm is screwed up, I don’t sleep very well.” People later started talking about myalgic encephalitis/chronic fatigue syndrome. What is it about? I’m fascinated by this. There’s a combination of genetic, epigenetic, environmental factors that kicks off in people following an infection.


The full interview can be found here:
https://www.science.org/content/article/anthony-fauci-becoming-devil-and-warning-his-successor

 

[duncan]

People later started talking about myalgic encephalitis/chronic fatigue syndrome. What is it about? I’m fascinated by this.

Yay. Free Press.

They would say, “Something is wrong, I just don’t feel right. I get tired twice as easy, I feel achy, my rhythm is screwed up, I don’t sleep very well.”

Oh dear.

 

[Sid]

Ugh.

 

[rvallee]

I do believe him when he says this, see no reason to think he'd make this up. But his description is very lacking, and I'd be far more interested in knowing why he couldn't do this when he was director of the NIH institute that is most capable of dealing with this. He could have done 1000x more in a single year than if he'd spent his entire career as a researcher, and that's accounting for his celebrity status.

It truly is fascinating, but it's so much more disabling that what he describes. That bit is disappointing. It's not even hard to understand.

 

[duncan]

Will he work with Baraniuk, I wonder.

I do believe him when he says this, see no reason to think he'd make this up. But his description is very lacking,

Curious that he didn't call it CFS, that he knew to call it ME/CFS, but that he'd characterize it in such a tone deaf manner.

There’s a combination of genetic, epigenetic, environmental factors that kicks off in people following an infection.

How'd he get here? Seems like a bunch of assumptions folded into this observation.

ETA: It's easy to read stuff into a what is likely a meaningless reference. Except, it's uttered by someone who is used to having what he says scrutinized. So, balance I suppose.

 

[Hubris]

In an interview with Science Anthony Fauci reviews his career and states that he believes that ME/CFS is currently the most interesting disease to study for him.

Nice, at 82 years of age his career is just getting started so I'm sure he will have plenty of avenues to start studying ME, and he will totally be held accountable for his commitment

 

[EndME]

Nice, at 82 years of age his career is just getting started so I'm sure he will have plenty of avenues to start studying ME, and he will totally be held accountable for his commitment

His hundredth birthday can then be celebrated with the intramural study being published in the year 2041. Just in time to get the ball rolling...

 

[Jonathan Edwards]

How'd he get here? Seems like a bunch of assumptions folded into this observation.

It is just the mantra. But is intriguing that the way he says it makes no sense. Genetic factors do not kick off after infection. They were always there. And the environmental factor will be the infection which kicked in already - not off after.

His mistake is to miss the stochastic element emphasised by Stastny. Stastny was a great scientist. He showed that immune genes have a role in autoimmunity and while at it pointed out that chance was probably more important than environment. Fauci made his name out of giving people dying of renal lupus cyclophosphamide. It kept a lot of people alive but a good number developed infertility and bladder cancer. He has to be given the credit for being proactive.

It was under his watch that Covid-19 killed a million Americans. That story has not been fully told by any means yet.

 

[duncan]

But is intriguing that the way he says it makes no sense

Yes. It's how he is packaging ME/CFS, for lack of a better word. I think you are alluding to the genetics thing, but the whole little tangent seems off somehow.

 

[Dakota15]

His hundredth birthday can then be celebrated with the intramural study being published in the year 2041. Just in time to get the ball rolling...

Totally get what you mean but to be fair now, it's on the medical journal to publish [most likely NJEM, is my hunch..] as NIH released the study to whichever journal is peer reviewing (October will make it month 6 at said journal)

 

[EndME]

Totally get what you mean but to be fair now, it's on the medical journal to publish [most likely NJEM, is my hunch..] as NIH released the study to whichever journal is peer reviewing (October will make it month 6 at said journal)

For all I care they can take 2 years to peer review it. The problem is not uploading a preprint to the Arvix and that's on the authors.

 

[Braganca]

Totally get what you mean but to be fair now, it's on the medical journal to publish [most likely NJEM, is my hunch..] as NIH released the study to whichever journal is peer reviewing (October will make it month 6 at said journal)

Or maybe Nature.. it says 7 months on their site from submission to publication.. which would make it November.

 

[EndME]

Or maybe Nature.. it says 7 months on their site from submission to publication.. which would make it November.

These timeframes are rather rough suggestions than anything else. Take for example the recent Iwasaki paper published in Nature. It took one year and 1 month from submission to publication. However, they also released a preprint once they submitted the paper so that was never an issue.

 

[SNT Gatchaman]

I hope the approach has the benefit of a "media blitz" with solid and unassailable publications that have all passed peer review in the leading journals.

I recall reading from EndME here, that multiple supplementary papers (presumably on standby having already passed peer review) will follow publication of the main paper.

 

[EndME]

I hope the approach has the benefit of a "media blitz" with solid and unassailable publications that have all passed peer review in the leading journals.

Is that really the case though? If anything I feel like Iwasaki's recent publication received twice the media attention, once as preprint and later again when it was published after passing peer review.

When I asked two different groups in the ME/CFS/LC field why they don't make their preprints public, the response was once that there's too much speculation in this field with people jumping aboard too many bandwagons and the other group didn't even seem aware of open access preprint repositories. Overall I find neither answer convincing, especially as this reasoning doesn't apply to other sciences like mathematics and physics which are a lot more advanced in this aspect. I might be missing something, but to me it's simply "bad/outdated" conduct of research even though it's unfortunately still quite common in biomedical research.

 

[Lucibee]

Hmmm... methinks Fauci is trying to rewrite history somewhat. Or maybe, not so much rewrite, but establish it - as it is very difficult to find out what he has actually said about ME/CFS in the past.

Cort thinks he remembers: https://www.healthrising.org/blog/2...ing-it-about-chronic-fatigue-syndrome-me-cfs/

And I've had a little look back through my copy of OW to find this extract from the chapter on 1991 (Black Diamonds - A conspiracy of dunces - p471):

"When pressed for his boss's scientific views of the disease, [James] Hill said, "Fauci wonders why the patients are so upset about being labeled with a psychiatric problem. I remember he said to me, "Haven't we come far enough along in our society that mental illness needn't carry a stigma?""

That sort of attitude crops up elsewhere as well - but there are no direct quotes from Fauci himself and there only seems to be HJ's account that has this. However, we know this was a common sentiment at the time (on both sides of the Atlantic, and in Australia) and of course much more recently. I just wish someone of his ilk would acknowledge that.