Philadelphia Inquirer: "Anthony Fauci and unlocking the biggest mystery in medicine" by Michael J. Stephen MD

Anthony Fauci and unlocking the biggest mystery in medicine
Doctors are on the front lines of long COVID, affected between 1 and 2 million people in the U.S. Here's what's been learned so far.

https://www.inquirer.com/health/expert-opinions/expert-opinion-long-covid-20240106.html

 

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

 

Fauci was singing a very different tune during the Incline Village era of ME/CFS.

 

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.

 

It's disappointing that he only advocates for us after he retires. Maybe he's no longer pressured by his colleagues or has more time to ponder things.

 

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.

 

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 apologising is one of the ways in which he and others can effect change.

 

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

 

I’ve missed this. Can someone please point me to the relevant quote and thread?

 

Truth and reconciliation first requires truth. At the very least an insistence on the inclusion of M.E. cohorts in research going forward.

 

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.

 

Members only - 2. UK 2023 Interim Delivery Plan on ME/CFS consultation - Attitudes and education of professionals | Science for ME (s4me.info)

comments going from @Arvo onwards (4th comment after the two S4me posts)

 

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.

 

Yes, even now that the reality of postviral syndromes can no longer be denied, with millions of previously normally functioning individuals succumbing to disability en masse, he finds a way to exclude us.

 

And even in the ongoing Covid pandemic, you can't assume that all new cases of ME/CFS are from SC2. The other causative pathogens (+/- non-pathogen triggers) haven't gone away.

 

Ah yes. Thanks. I see commented on the thread. It rang a bell, but I’d forgotten the details.