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

lenora

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We have only the here and now. Rufous is right, forget about the past. Have you changed your mind about something...well, so let's give other people the same credit.

Personally, I can't see Research coming from govt. coffers, but who knows, in this game one must remain ever hopeful. Why can't money be taken from some of the other programs such as ME and Cancer?
Let's at least make them remember our name...for next time and the time after that. Yours, Lenora.
 
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lenora

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Thanks, Sushi, it may not get us anywhere, but one thing's for sure...negative comments will be immediately dumped (or put in the fire!). I wish you much luck in having an easier resolution than I've had. It would be nice to see the focus placed on us for a change. Yours, Lenora.
 
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We have a friend who is a 'long haul' covid19 survivor and she does seem to have very similar symptoms to me/cfs. I think because of the large numbers of aditional people experiencing these problems it is inevitable that more funding must be put into research.
 

lenora

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I did manage to get a question into Dr. Fauci...probably the same as everyone else's re: funding. We'll be lucky, but why not try?

Thanks to all who sent questions....it was important. Who brought it up initially? Sushi, think, or perhaps Rufous, anyway special thanks to them.
 

lenora

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I watched it, Sushi. It was very fast and, unfortunately no questions were asked. Next time???? Yours Lenora.
 
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Around minute 28, Dr. Fauci mentions- six months later when will some individuals return to normal?

(Ok, thats not a direct quote).

So- he never said- It looks like some people may fail to recover or may develop post viral conditions which drag on, like those ME folks have.

The way he said it- normal is something that should return.

We know normal is something that can- go bye bye.

Most important point I think: he concurred with what my own Doctor said: we must come up with early onset treatments- for the first 1-2 days- that prevent this thing from getting so severe.

oh: and we now know what the US Public Health System- is not capable of dealing with. We just about don't have a public health system.
 
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Second star to the right ...
It sounds like he might have changed his view. It's never too late to learn.:)
I agree ... if we were all held responsible for mistaken opinions and thinking in the past, without allowing for time, experience, and change to work their magic, none of us would be comfortable expressing an opinion now on anything ...
Chronic fatigue syndrome sounds so petty in comparison what this disease really is.
Totally agree. Along with that, the nearly 2 decades of dismissal, denial, and contempt from the medical machine seems to rub off on ME in an undeniable, and often undefeatable, way ....


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!
I am too, but as I've stated elsewhere, I'm not gonna wait standing up ...


Add to that the very human, infantile, need to believe that their pain, their systemic condition, their disabilitizing is so much worse than someone else's ME, and there goes any hope of collateral consideration ....

And if they actually knew what a long haul is.
Yeah. It would be really interesting to see how they're doing after, oh I don't know, say a decade of this ....
We should focus on the present instead of trying to- get him to admit some past mistake.
I tend to agree .... sufficient unto the day the evil, or good, thereof ....
Of course, it would be so refreshing for humans to- admit something was a mistake and own up to it.
Some can. Most can't, seeing it as a sign of weakness to admit to a mistaken opinion or judgment or, worse, action ...
 

ebethc

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Here's another Fauci interview w more references to CFS or post viral problems... I'm taking this as a good sign that the earlier references aren't just a momentary POV... I hope it sticks and he commits $$ to research
https://www.msn.com/en-us/health/me...people-could-be-chronic-illnesses/ar-BB16QfzY

"Fauci said some patients may suffer from "post-infection syndromes" that resemble chronic fatigue syndrome — a disease often characterized by cognitive impairment, muscle pain, and a debilitating lack of energy. UK doctors also warned of post-viral syndromes among coronavirus patients in June.

"You have to separate the damage from the disease," Dr. Ramzi Asfour, an infectious-disease doctor in Marin County, California, previously told Business Insider. "The symptoms are probably coming from an immune reaction."

Asfour said he has seen college-aged patients with mononucleosis who have had severe fatigue for two years, or viral infections that trigger a lifelong autoimmune disease like lupus or rheumatoid arthritis. The coronavirus could have similar effects on patients, he said."
 

maddietod

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Dr. Fauci seems to be going out of his way to reference ME/CFS. I watched him interviewed by Zuckerberg yesterday, and when asked about recovery times, Dr. Fauci did it again. But, like Chris Cuomo, he shortened ME to something like myalgic encephalitis, then also saying chronic fatigue syndrome. I wonder if Dr. Fauci is purposely shifting the name to something very medical sounding but more easily pronounced.
 

Mary

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But, like Chris Cuomo, he shortened ME to something like myalgic encephalitis, then also saying chronic fatigue syndrome. I wonder if Dr. Fauci is purposely shifting the name to something very medical sounding but more easily pronounced.
I'll take it! Better than Chronic Fatigue Syndrome all by itself! :wide-eyed:
Inflammation of the meninges, the membranes that surround the brain and spinal cord, is called meningitis; inflammation of the brain itself is called encephalitis. Myelitis refers to inflammation of the spinal cord. When both the brain and the spinal cord are involved, the condition is called encephalomyelitis.
https://www.ninds.nih.gov/Disorders...Sheets/Meningitis-and-Encephalitis-Fact-Sheet
 

ebethc

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Antibodies for Covid don't last long, which is bad news for a vaccine as a "silver bullet"

HOWEVER, it could have a silver lining for CFS/ME b/c the focus will shift to treating the acute AND post viral stages better...

https://www.sfchronicle.com/health/...rus-antibodies-fading-fast-focus-15414533.php

“I just don’t see a vaccine coming anytime soon,” said Nevan Krogan, a molecular biologist and director of UCSF’s Quantitative Biosciences Institute, which works in partnership with 100 research laboratories. “People do have antibodies, but the antibodies are waning quickly.” And if antibodies diminish, “then there is a good chance the immunity from a vaccine would wane too.”
 

Sushi

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Antibodies for Covid don't last long, which is bad news for a vaccine as a "silver bullet"

HOWEVER, it could have a silver lining for CFS/ME b/c the focus will shift to treating the acute AND post viral stages better...
Yes, and though the antibodies don’t seem to last long, T cells seem to be activated which may fit with the screwy immune profiles of ME/CFS patients.
 

Sushi

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I'll take it! Better than Chronic Fatigue Syndrome all by itself! :wide-eyed:
I’ll take Myalgic Encephalitis over Chronic Fatigue Syndrome any day too! And since it was Fauci who use this term I doubt if it was a mispronunciation but rather what he intended to say. He is, after all, the NIH head of infectious disease is (which is the division of the NIH where we live). If he follows this up with action, I don’t care exactly what he calls the illness. When talking with Zuckerberg about lingering symptoms he also said that they have “a lot more information on this,” which implies ongoing research. Let’s stay tuned.