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

Tom Kindlon said:
ME/CFS-like illness following COVID-19 slides: https://www.cdc.gov/me-cfs/pdfs/21-sec-call-may-17-2023-skarbinski-mec-fs-after-covid-508.pdf

Page 12:
Burden of ME/CFS-like illness after COVID-19 might be very large

Our study
2,586,396 adults ×50% had COVID-19 ×1 in 200 with ME/CFS-like illness after COVID-19 =
6,748 (95% confidence interval 1,782-11,713)

United States
258,327,312 adults ×50% had COVID-19 ×1 in 200 with ME/CFS-like illness after COVID-19 =
673,985 (95% confidence interval 177,985-1,169,886)
Click to expand...
A recording has now been posted in the last 24 hours.

A webinar recording featuring a presentation titled, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like Illness Following COVID-19 in a Large Integrated Health System: Findings from the STOP ME/CFS Study” by Dr. Jacek Skarbinski, Department of Infectious Diseases, Kaiser Oakland/Richmond, California. Also featuring program updates from Dr. Jennifer Cope and a question-and-answer session with Drs. Skarbinski, Unger, and Cope.

Here are the basic links:
Transcript,
https://www.cdc.gov/me-cfs/pdfs/sec-may-17-2023-cdc-program-updates-508.pdf

WebTV,


Presentation,
https://www.cdc.gov/me-cfs/pdfs/21-sec-call-may-17-2023-skarbinski-mec-fs-after-covid-508.pdf


Click to expand...
 
Dr Cope from the CDC started the call
Thank you, Christine, for that introduction and welcome everybody to the 21st S-E-C Call. I would like to begin with recognizing the continued dedication of the many ME/CFS organizations and advocates that work to bring awareness to the serious long- term illness. As many of you know, we observed ME/CFS International Awareness Day last Friday on May 12th. ...
Click to expand...
This sounded like a genuine acknowledgement of ME/CFS with actions, including work educating school nurses, that seem to go beyond the fobbing off that we have so long been subjected to.
 
Having listened to the call, the main thing I am left with is the great and increasing gap between the need for care, for treatments for ME/CFS, and the ability of medical systems to provide these things. Dr Cope seemed to accept that, and almost seemed embarrassed by it. Whether she is representative of the decision-makers in the CDC is of course hard to know.

I'm pleased that Kaiser Permanente is examining its medical records and communicating with patients to increase its understanding of ME/CFS epidemiology. From the call, it was hard to know exactly what Kaiser Permanente is doing on the ground to care for patients. There was a big emphasis on people with ME/CFS-like illness suffering from depression and anxiety, but no acknowledgement in the talk that the two survey tools used to rate these issues are hopelessly compromised in people who have chronic diseases with physical symptoms.
 
Last edited:
Selected quotes.

"Chronic Symptoms Following Infections

Infections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment. Some of these symptoms are well-recognized and specific to the type of infection, for example, loss of smell and COVID-19. Other symptoms are unexplained and general (e.g., fatigue or difficulty thinking). Similar symptoms can follow many different types of infections. These general symptoms include:

  • Tiredness or fatigue that interferes with daily life
  • “Flu-like” symptoms including, muscle pain, headache, sweating, irritability, and general feelings of sickness
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”), trouble finding words
  • Chronic or recurrent joint pain
  • Sleep problems"

"Some people with chronic symptoms following infections may not know which infection triggered the symptoms, or even recognize that they had an infection before their chronic symptoms began. People with chronic symptoms and unknown preceding infection may be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome."

"In many cases, there are no specific treatments or cures for chronic symptoms following an infection. There are, however, steps you can take to reduce the impact these symptoms have on your life. Given the overlap in symptoms, management and treatment approaches for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be helpful for people experiencing chronic symptoms."
 
Andy said:
nfections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment. Some of these symptoms are well-recognized and specific to the type of infection, for example, loss of smell and COVID-19. Other symptoms are unexplained and general (e.g., fatigue or difficulty thinking). Similar symptoms can follow many different types of infections. These general symptoms include:

  • Tiredness or fatigue that interferes with daily life
  • “Flu-like” symptoms including, muscle pain, headache, sweating, irritability, and general feelings of sickness
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”), trouble finding words
  • Chronic or recurrent joint pain
  • Sleep problems"
Click to expand...
Absurdly understated. Another "aches and pains of everyday life" moment. Lip service.

Not good enough. Worse. It's like an embossed invite for misunderstanding. This is low-hanging fruit for foraging BPS hillfolk.

"Other symptoms are unexplained and general (e.g., fatigue or difficulty thinking)" - repackaged MUS?
 
Last edited:
This does appear to be a noteworthy change from decades ago. However, it has taken the ME community decades of advocacy, and biomedical research for this change to come about. And, this move is still in its infancy.

There is a huge disconnect between the CDC putting up a new website, and a pwME sitting in a medical consult room being told to go to the gym, and their health will improve.
 
This website is being widely applauded in Lymeworld. They seem to think the CDC is acknowledging Bb as a cause of persistent symptoms on the website. That is not the case.

Moreover, and more pertinent as far as I am concerned, I cannot seem to find the word "disabling" in any of the symptom characterizations.
 
https://www.cdc.gov/me-cfs/programs/meetings.html

CDC holds regular Stakeholder Engagement and Communication (SEC) calls to update the ME/CFS community on CDC activities and facilitate presentations from guest speakers. CDC co-sponsors and participates in the NIH Interagency ME/CFS Working Group meetings. CDC also holds Roundtable Meetings with partners composed of ME/CFS patients, advocates, educators, clinicians, and researchers to gather vital partner input on specific projects and products.

The next CDC ME/CFS Stakeholder Engagement and Communication (SEC) conference call will be held on Monday, December 18, 2023, 3:00 pm Eastern Time.

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
  • Viruses in ME/CFS – Research Updates from Early Career Investigators
    • Introduction:
      Vicky Whittemore, PhD
      Program Director, Division of Neuroscience, Neurological
      Disorders and Stroke
      National Institutes of Health
    • Presentation 1:
      Understanding Infectious Origin of ME/CFS through the Recent Pandemic
      Bhupesh K Prusty, PhD
      Institute for Virology and Immunobiology
      University of Würzburg, Würzburg, Germany
    • Presentation 2:
      Endogenous Retroviruses and ME/CFS
      Dawei Li, PhD
      Associate Professor, Department of Immunology & Molecular Microbiology
      Texas Tech University Health Sciences Center, Lubbock, Texas
Question and Answer (Q&A)
To ask a question during the meeting within the Zoom webinar platform, please:

  • Click on the “Raise Hand” button.
  • Ask your question when prompted.
To ask a question during the meeting by phone, please:

  • Enter *9 to add yourself to the queue.
  • Ask your question when prompted.
https://twitter.com/user/status/1724127416711274710
Click to expand...
 
Bhupesh Prusty talks about the levels of fibronectin being high in serum but not in plasma, so advocates only measuring in serum. Also discusses the interaction between serotonin and fibronectin (serotonylation of fibronectin).

See —

Serotonylation: Serotonin Signaling and Epigenetics (2019, Frontiers in Molecular Neuroscience)

Novel and atypical pathways for serotonin signaling (2021, F1000Prime Rep)

Serotonylation and Transamidation of Other Monoamines (2015, ACS Publications)

Transglutaminase-mediated transamidation of serotonin, dopamine and noradrenaline to fibronectin: Evidence for a general mechanism of monoaminylation (2012, FEBS Letters)
 
Moved post

Medscape Long COVID Has Caused Thousands of US Deaths: New CDC Data

quote:
  • COVID-19 was the third leading cause of American deaths in 2020 and 2021, and the fourth leading cause of death in the United States in 2023.
  • Nearly 1% of the more than one million deaths related to COVID-19 since the start of the pandemic have been attributed to long COVID, according to data released by the CDC.
  • The proportion of COVID-related deaths from long COVID peaked in June 2021 at 1.2% and again in April 2022 at 3.8%, according to the CDC. Both of these peaks coincided with periods of declining fatalities from acute infections.
"I do expect that deaths associated with long COVID will make up an increasingly larger proportion of total deaths associated with COVID-19," said Mark Czeisler, PhD, a researcher at Harvard Medical School who has studied long COVID fatalities.
 
Last edited by a moderator:
Dolphin said:
Slides now available for presentations at CDC December 18 #MEcfs event

-“Understanding Infectious Origin of ME/CFS through the Recent Pandemic” Dr. Bhupesh K. Prusty

-“Endogenous Retroviruses and ME/CFS" Dr. Dawei Li

https://www.cdc.gov/me-cfs/pdfs/22-sec-slides-prusty-508.pdf
Click to expand...
A YouTube recording is now available for the December 2023 CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call

https://twitter.com/user/status/1751067342568669319
Click to expand...
 
From: Brimmer, Dana (CDC/NCEZID/DHCPP/CVDB) (CTR)
Sent: Tuesday, April 2, 2024 7:41 PM
To: MECFS-SEC (CDC)
Subject: Mark Your Calendars CDC ME/CFS SEC Call May 6, 2024


MARK YOUR CALENDARS


May 6, 2024

3:00 pm Eastern Time





CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

participants can join the call using zoom by clicking on the LINK OR copying and pasting it into your web browser.

participants can join the zoom webinar by clicking this link:

https://cdc.zoomgov.com/j/1616905952?pwd=QWhabnVwRmllS3F1Z3FiRncvNmVTQT09



when the zoom page opens,

  • click on the “launch meeting” button,
  • enter your email address and name, then
  • click on the “join webinar” button.
participants can also join by phone using one of the following numbers (when prompted, please enter the meeting id and passcode):


TELEPHONE: 1-669-254-5252 or 1-646-828-7666

MEETING ID: 161 690 5952

PASSCODE: 66202454

International numbers available: https://cdc.zoomgov.com/u/abb8G0pyoK



Meeting Agenda

Welcome and Meeting Overview

Updates from CDC

Elizabeth Unger, Ph.D., M.D.

Branch Chief, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention



“Deep Phenotyping of Post-Infection Syndromes and the Way Forward”

Brian T. Walitt, M.D., M.P.H.

Avindra Nath, M.D.

National Institutes of Health, National Institute of Neurological Diseases and Stroke (NINDS)



Question and Answer (Q&A)


To ask a question during the meeting within the Zoom webinar platform, please:

  • Click on the “Raise Hand” button.
  • Ask your question when prompted.
To ask a question during the meeting by phone, please:

  • Enter *9 to add yourself to the queue.
  • Ask your question when prompted.

Closed captioning link:

https://www.streamtext.net/player?event=17440MECFSStakeholderEngagementandCommunications.


More information about CDC SEC Calls can be found at the CDC ME/CFS website.

Meetings | Programs | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC


Disclaimer: Although the content of calls is directed to patients, caregivers, healthcare professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore, please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.



If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls.


Reasonable Accommodation (RA)

CDC supports participation in all events by persons with disabilities. If you require a reasonable accommodation for a disability, please contact MECFSSEC@cdc.gov as soon as possible with details of your request.
 
You must log in or register to reply here.
Back
Top Bottom