USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

This post has been copied from the Long Covid thread here

Just discovered that CDC has updated information about ME and Covid-19. Perhaps it's been shared before, and I've forgotten, but here it is:

ME/CFS and COVID-19: What we know

CDC is working with partners and stakeholders to better understand post-COVID conditions and how they affect people with ME/CFS. Currently, there are limited data and information about the long-term effects of COVID-19. A recent report found that COVID-19 can result in prolonged illness, even among adults without underlying chronic medical conditions. Future studies will help identify whether some people with delayed recovery develop an ME/CFS-like illness.

It is especially important for people at increased risk of severe illness from COVID-19 to protect themselves. Currently, ME/CFS is not included in the list of medical conditions that increase risk of severe illness from COVID-19. However, people with ME/CFS might consider taking extra precautions to reduce their risk of getting COVID-19. We are learning more about COVID-19 every day. As new information becomes available, CDC will continue to update our recommendations and guidance.

https://www.cdc.gov/me-cfs/index.html
 
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Centers for Disease Control and Prevention (CDC)
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The CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder
Engagement and Communication (SEC) call took place on December 16,
2021. During the webinar, patients, advocates, caretakers and medical
professionals heard an update from Dr. Beth Unger, chief of the
Chronic Viral Disease Branch, which works on ME/CFS. Guest speaker,
Dr. Hector Bonilla gave a presentation titled, "Is ME/CFS Another Face
of Long Covid?"

From: Dr. Marc-Alexander Fluks


Station: CDC / YouTube
Date: December 16, 2021
WebTV:
URL:
https://www.cdc.gov/me-cfs/pdfs/SEC-transcript-December-2021-508.pdf
https://www.cdc.gov/me-cfs/pdfs/CFS-Covid-presentation-508.pdf

Item: CDC ME/CFS SEC Call, december 16, 2021


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These results will NOT be a surprise to anyone on this forum. :rolleyes:

Also, I did not see any date for this story on webmd.com! (but maybe I missed it?) But I know this study must be relatively recent since the data collection was done from Jan-June 2021.

Chronic Fatigue Syndrome: The Need to Raise Awareness
https://www.webmd.com/chronic-fatigue-syndrome/features/chronic-fatigue-study
webmd.com said:
A new study by the CDC and Medscape shows that lack of awareness about ME/CFS is widespread, and this delays diagnosis and treatment for years. The study's findings were based on an online survey completed by 3,550 adults 18 or over who visited WebMD.com from Jan. 22-Jun. 8, 2021.

“One of the most striking findings from the survey was that so many people have trouble being understood by their clinician when they talk about their symptoms,” says Elizabeth Unger, MD, PhD, chief of the CDC's Chronic Viral Diseases Branch.

Most doctors and people with chronic fatigue syndrome don't know the name of this syndrome or anything else about it. The CDC estimates that 90% of people with ME/CFS aren't diagnosed by a health care professional.

“Of all the people who completed the survey, only 46% had ever heard about ME/CFS. Even among those who do, only a minority understood there's a medical reason for their symptoms. Patients and their families aren't aware that it exists, and that they can get help and seek care from their primary care physicians,” Unger says.
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I looked for a link to the actual survey that was published but somehow I couldn't find it.

I think the title of the study is the first item listed in the sources at the end of the article (see quoted section below, first item). But the list of sources is text only, no links.
webmd.com said:
SOURCES:

CDC/Medscape survey: “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Knowledge, Attitudes and Beliefs in the U.S. General Public.”

Elizabeth Unger, MD, PhD, CDC.

Hector F. Bonilla, MD, Stanford Health Care.

John Whyte, MD, MPH, chief medical officer, WebMD.

CDC: “What is ME/CFS?”

Mayo Clinic Proceedings: “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.”

News release, National Academy of Sciences.
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Post by @rvallee about tweets from a journalist commenting on the lack of availability of CDC staff for discussions:
Long Covid in the media and social media 2022
I’ve reported on the CDC for over a decade — and I haven’t been able to get answers from them on almost anything for two years. Sources I knew for years totally dried up—didn’t reply to emails, couldn’t reach them on the phone, etc.
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There are interesting tweets there in the twitter thread, some suggesting that the CDC may have found itself operating in a very difficult political environment. A natural response of CDC staff to that, along with the difficulties of working through the pandemic, may have been to greatly limit availability to answer questions from journalists.
 
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I came across this on reddit:

I'm watching the CDC Stakeholder Zoom right now

...and they're featuring someone who's pushing GET, CBT, and depression treatments.

I don't know why I ever get my hopes up about these things.
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I assume it's this meeting:

Meeting Agenda:
Welcome and SEC Call Overview

Updates from CDC:
Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention

ME/CFS Program Update pdf icon[PDF - 7 pages]

Guest Speaker:
Stephen Gluckman, MD
Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
"The Management Options (yes there are management options) for People with ME/CFS"
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I've had a look on other social media to see if this can be verified, but haven't seen anything.

Edit:
 
No wonder the CDC is failing Long Covid, refuse to do anything about it. They literally can't learn, are stuck in the ideology. This is absurd level of incompetence and frankly a slap to the face. The CDC are being insulting on purpose with this stuff.

 
Ariel said:
I don't understand the force behind persisting in saying that CBT and GET can be "management tools in the right setting" (Unger on screenshot). What is the angle? Why are they doing this?
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They won't admit they were wrong. At this point it must have to do with liability, as long as they don't admit they were wrong, ME can continue to be suppressed. There is precedent for class-action lawsuits about medical advice that continued after it was known to be wrong. Until it's admitted, it can't be used in court. Same with tobacco, liability could be kept at bay as long as it could continue to be denied.

Doubtful there is any other reason at this point, it's too pathological and it's dying on the smallest hill ever built. There is simply way too much documentation about having been warned repeatedly, those calls are basically ongoing evidence of their blatant refusal to acknowledge reality. And it allows to continue ignoring Long Covid, which is clearly a political priority, as government policies directly lead to mass disability, to people dying, in combination with refusal to acknowledge the existence of post-infectious chronic illness.
 
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