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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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:

https://www.youtube.com/watch?v=ty8UB6V76cI

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

 

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

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

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.

 

Just FYI, I learned about that WebMD story (previous post) from a tweet posted by @Tom Kindlon

 

I came across this on reddit:

I assume it's this meeting:

I've had a look on other social media to see if this can be verified, but haven't seen anything.

Edit: https://twitter.com/user/status/1525214908198989824

 

The speaker, Gluckman, was the author of this a few years ago, MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020, so not surprising that he should recommend GET and CBT I suppose.

 

Who or what is behind people like this being invited to speak at such meetings and calls?

 

Beth Unger (CDC) is responsible apparently:

https://twitter.com/user/status/1525264872606294022

 

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.

https://twitter.com/user/status/1525353830036082689

 

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?

 

Lie to the patient.

 

He was also a reviewer of the IOM Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome report (2015). I couldn't find any other authored publications related to ME/CFS in PubMed.

 

I take offence in Dr Unger's mention of "mainstream medicine" as she seems to be excluding ME within the realm of mainstream medicine. I think it was tactless and injurious, especially during the ME Awareness Month.

 

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.