Fauci likens “Long-haul” Covid-19 patients to ME/CFS patients

[Sushi]

"There may well be a post-viral syndrome associated with Covid-19," Fauci, director of the National Institute of Allergy and Infectious Diseases, told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting. Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.

https://www.cnn.com/2020/07/09/us/chelsea-alionar-long-battle-with-covid/index.html

 

[ljimbo423]

It's good to hear somebody with credentials like Fauci saying this!

Fauci says some Covid-19 patients develop long-term fatigue syndrome
Though not commenting directly on Alionar's case, Dr. Anthony Fauci said Thursday that there's evidence some people develop a long-term fatigue syndrome from coronavirus infections.

"There may well be a post-viral syndrome associated with Covid-19," Fauci, director of the National Institute of Allergy and Infectious Diseases, told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting.


Americans made 'tremendous sacrifices.' The great reopening of the pandemic summer still got derailed

Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.

"If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery," Fauci said.

"There are chat groups that you just click on and see people who recovered that really do not get back to normal," Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.

 

[Mary]

Okay, it's nice to hear Fauci say that, but he has not been a friend to people with ME/CFS:

Anthony Fauci, director of the National Institutes of Allergy and Infectious Diseases and considered the AIDS "Czar" (he accrued hundreds of billions of dollars for his institute to develop therapies for HIV infections), Fauci is hugely popular within the AIDS community. In contrast to his service on behalf of AIDS, Fauci has taken every opportunity to bury M.E. for the last 35 years. As first reported in Osler's Web, in the early 1990s Fauci expressed his bewilderment--through the NIAID deputy director who he authorized to speak for him--that patients were distressed by psychiatric diagnoses since the stigma surrounding mental illness presumably had subsided. Fauci also accompanied Stephen Straus of the NIH clinical center to Capitol Hill to demand that Congress people quiet constituents who were flooding the NIH with letters pleading for Straus--an influential M.E. denier--to be fired. Upon Straus's death in 2007, Fauci directed that the disease be overseen by the Office of Women's Health, a tiny office with no labs or scientists, no authority to submit or fund research grants, and minimal authority within the NIH cosmos. The disease languished, unresearched and essentially buried in this bureaucrat's netherworld until 2016, when NIH announced its interest in conducting a clinical trial of patients at the agency.

https://www.oslersweb.com/faqs

 

[Hip]

Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.

That's interesting phrasing coming from Fauci: he calls it "ME, once known as chronic fatigue syndrome", which suggests that the researchers at the NIH want to get rid of the CFS name, and go back to the original ME, which is great. (That's assuming Fauci said it, rather than the journalist writing the article).

 

[ljimbo423]

Okay, it's nice to hear Fauci say that, but he has not been a friend to people with ME/CFS:

It sounds like he might have changed his view. It's never too late to learn.

 

[ljimbo423]

That's interesting phrasing coming from Fauci: he calls it "ME, once known as chronic fatigue syndrome", which suggests that the researchers at the NIH want to get rid of the CFS name, and go back to the original ME, which is great.

That's something I would like to see too. Chronic fatigue syndrome sounds so petty in comparison what this disease really is.

 

[Sushi]

More on his statement and a video link: https://www.meaction.net/2020/07/10...ghly-suggestive-of-myalgic-encephalomyelitis/

During an International AIDS Society Covid-19 press conference held July 9th, Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force) answered a question posed by Terri L. Wilder, who is the #MEAction New York leader, journalist for

TheBodyPro website, and long-time ME and HIV activist. Terri Wilder used this opportunity to ask Dr. Fauci what the NIH is doing to address Covid-19 “long-haulers” risk of developing ME ( read this article, and this one, on why some Covid-19 patients will go on to develop ME)

33:19

 

[Mary]

It sounds like he might have changed is view. It's never too late to learn.

I think you're more forgiving than I am!

 

[Sushi]

I think you're more forgiving than I am!

I know he has not supported ME/CFS patients in the past, but if his views change now, for whatever reasons, it could help us as ME/CFS is “lodged” in his area of the NIH and maybe we can ride the wave of research interest (and panic!) that the Covid-19 pandemic has generated.

 

[Pearshaped]

I can tell you many long covid haulers dont like to be put in our basket,and from what I read on Twitter,Im not sure if they would be so protective over us...
They can be glad if they are „only“exhausted is my opinion.

I just want to say that, its more the media that wants us to have concerns about „longcovid“ but I‘m not sure about the scientists(like @Mary with her post has pointed out).

We all are exited about it bec we think it could help us getting the medical attention and eventually treatment we need but im not sure if this will happen...

 

[ljimbo423]

I know he has not supported ME/CFS patients in the past, but if his views change now, for whatever reasons, it could help us as ME/CFS is “lodged” in his area of the NIH and maybe we can ride the wave of research interest (and panic!) that the Covid-19 pandemic has generated.

This is my thinking as well. If he can help now, I'm all for it.

 

[Rufous McKinney]

Fauci: he calls it "ME, once known as chronic fatigue syndrome"

Sounds like he is positioning himself for a revisionist history.

 

[Mary]

I know he has not supported ME/CFS patients in the past, but if his views change now, for whatever reasons, it could help us as ME/CFS is “lodged” in his area of the NIH and maybe we can ride the wave of research interest (and panic!) that the Covid-19 pandemic has generated.

This is my thinking as well. If he can help now, I'm all for it.

I completely agree with both of you! It's just I have no faith in Fauci and he's caused us so much harm - putting ME/CFS in Women's Health - I'd like to see him acknowledge this and all the harm that caused. Hah! I know it will never happen, but I think we deserve it.

So yes, I'm hoping like everyone else that COVID-19 might lead to some actual money being spent on meaningful research for ME/CFS, though I'm not holding my breath!

 

[Rufous McKinney]

but I‘m not sure about the scientists(like @Mary with her post has pointed out).

My primary care physician indicated yesterday Covid-19 is- a horror show. Its running rampant thru bodies doing all kinds of very bizarre and challenging things.

They are evicting patients who show up without masks- they tell them to immediately leave the office. Some claim they have every right to: show up without a mask and be seen.

My doctor is no hysteric. We- sobered up real quick. My 75 year old husband is one step away from a coronary crisis, with out COVID. I'm- this.

 

[Rufous McKinney]

I can tell you many long covid haulers

And if they actually knew what a long haul is.

 

[ljimbo423]

It's just I have no faith in Fauci and he's caused us so much harm - putting ME/CFS in Women's Health - I'd like to see him acknowledge this and all the harm that caused. Hah! I know it will never happen, but I think we deserve it.

I think you and everyone hurt by what Fauci has said and done in the past deserve an acknowledgement from him for that. As you say, it's not likely but you still deserve it.

 

[Sushi]

Stanford is hosting a "fire side chat" with Dr. Fauci on Monday. There is an opportunity to submit questions and I just submitted one on planning research connecting Covid-19 long-haulers and ME/CFS patients.

Join Dean Lloyd Minor as he hosts a virtual fireside chat
with Dr. Anthony Fauci

Date: Monday, July 13*

Time: 10:30 a.m. Pacific Time

Dean Lloyd Minor will host the government's leading infectious disease expert--Dr. Anthony Fauci--for a virtual fireside chat that contextualizes COVID-19's recent resurgence, highlights our path to overcoming the pandemic, and answers your pre-submitted questions.

Submit your questions now!

Click here to access the livestream.

If you use Internet Explorer, please see the note below.

Please note: Internet Explorer no longer supports the livestream platform. If you use Internet Explorer, please access this event by copying and pasting this URL - https://livestream.com/accounts/1973198/events/9190750- into a Firefox or Google Chrome browser.

*Date and time subject to change due to COVID-19's quickly evolving conditions.

 

[LongMacc]

This is huge.

Whether he supported those with ME/CFS in the past is irrelevant, he has just said this is "something we need to seriously look at". I hope that means money for ron and the OMF. The attitude change is a necessary precurser for real change and it looks like this is happening.

 

[Rufous McKinney]

The attitude change is a necessary precurser for real change and it looks like this is happening.

Great news you will be trying to ask Fauci these questions.

As you likely know, shaming and embarrasing people in public venues- rarely works.

We should focus on the present instead of trying to- get him to admit some past mistake.

Of course, it would be so refreshing for humans to- admit something was a mistake and own up to it.

 

[Sushi]

How about others submitting questions?