USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next event 6 May 2024

From Q & A, sounds like Astellas weren’t seeing (interim) data they liked from the Bocidelpar (ASP0367) trial, so they ended it, but data will still be analyzed. But there were no safety issues.

 

Thanks @BrightCandle. I wasn't able to watch this event. Did he give any details on what mutations were found?

 

The symbol for the citrate synthase gene is CS. That could be the one he talked about.

 

I find it very problematic that Dr Systrom continues to tout Mestinon as an effective treatment against post-exertional malaise (specifically) despite his trial showing no clinically meaningful difference on the invasive CPET between the placebo and Mestinon arms.

 

Yeah I don't know how much Mestinon helps with the PEM, but it does seem to help with filling pressure that he is seeing.

I know I always feel a little better getting 1-2 1L bags of fluid pumped into me like he seemed to do to some of his test patients on the ICPET. I wonder if Mestinon would be better for my POTS than taking Carvedilol..?

I could be wrong, but I am under the impression that his POTS w/CFS patients are the ones showing abnormal muscle mitochondria.

 

Speaking as one of his POTS with ME patients, I did not show mitochondrial dysfunction on iCPET

 

What kind of symptoms are you struggling with and what were his findings/treatments for you? Did you do a muscle biopsy to see?

 

I can't know this, but from my point of POV, I think it is very likely that most patients have a mitochondrial dysfunction/disease, even if nothing suspicious was found in the first biopsy. It is expected in primary mito disease only to see what is going on after repeated biopsies

 

Source: CDC / Twitter
Date: January 25, 2023
URL:

HCPs: While myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
is complex, case definition criteria make diagnosis possible. Learn how
to recognize and improve patients' symptoms with these trainings.
https://www.medscape.org/viewcollection/36895
----
Requires free login

https://www.medscape.org/viewcollection/36895

Expert Guidance on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
About This Series
This project has been funded in whole or in part with Federal funds from the National Center for Emerging Zoonotic and Infectious Diseases (NCEZID), Centers for Disease Control and Prevention (CDC), Department of Health and Human Services (HHS), under Contract No 75D30122P15156.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems and can often be misdiagnosed by healthcare professionals. Misconceptions among the general public, as well as the lack of clinician education, have resulted in clinician difficulty with accurate diagnosis and treatment of ME/CFS. The activities in this series will help clinicians recognize the ME/CFS symptom spectrum, treat those patients, and use evidence-based approaches to help alleviate or eliminate symptoms or comorbid conditions.

A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness
Would you recognize the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome in your patients?
0.50ABIM MOC

0.50CME/CE

30MIN

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Based Learning Module
  Test your knowledge of the diagnosis and management of patients with myalgic encephalomyelitis/chronic fatigue syndrome.
  1.50ABIM MOC
  
  1.50CME/CE
  
  90MIN

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Test Your Strengths and Gaps in Knowledge
  Assess your knowledge about the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome.
  0.25ABIM MOC
  
  0.25CME/CE
  
  15MIN

Archive

• Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In
  Would you recognize the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome in your patients?
  0.50ABIM MOC
  
  0.50CME/CE
  
  30MIN

 

I haven't read or watched this. There are some mentions of ME/CFS in the transcript. But I'm not sure how important it is for the ME/CFS community

https://emergency.cdc.gov/coca/calls/2023/callinfo_022323.asp

Evaluating and Supporting Children and Adolescents Presenting with Post-COVID Conditions

Overview
Post-COVID conditions (PCC), also referred to as Long COVID or post-acute sequelae of SARS-CoV-2 infection (PASC), is an umbrella term for the wide range of health consequences that are present 4 or more weeks after SARS-CoV-2 infection. Most children infected with SARS-CoV-2 have asymptomatic infection or mild acute symptoms with low rates of hospitalization and death. However, some children and adolescents, including those with mild or asymptomatic infection, develop post-acute manifestations of SARS-CoV-2 infection.

During this COCA Call, presenters will discuss evaluating and supporting post-COVID conditions in children and adolescents and the recommended clinical approach to identifying and managing PCC in children and adolescents based on the “Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of PASC in Children and Adolescents” published by the American Academy of Physical Medicine And Rehabilitation (AAPM&R).

Presenters
Tarayn Fairlie, MD, MPH
Medical Officer
Applied Epidemiology Studies Team
Corona and Other Respiratory Viruses Division (CORVD) (proposed)
Centers for Disease Control and Prevention

Louise Vaz, MD, MPH
Associate Professor
Division of Pediatric Infectious Diseases
Oregon Health & Science University

Amanda Morrow, MD
Co-director
Pediatric Post-COVID-19 Rehabilitation Clinic
Kennedy Krieger Institute
Johns Hopkins University School of Medicine
Mt. Washington Pediatric Hospital

Laura Malone, MD, PhD
Co-Director
Pediatric Post-COVID-19 Rehabilitation Clinic
Kennedy Krieger Institute
Johns Hopkins University School of Medicine

Call Materials
View Slides [PDF – 2 MB]
View Transcript [PDF – 88 KB]

 

Recently released:

December 6, 2022, 3:00 PM ET

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation titled, “Neurovascular Dysregulation During Exercise in ME/CFS & Long COVID,” by Dr. David Systrom, Brigham and Women’s Hospital and Harvard Medical School. Also featuring program updates from Drs. Elizabeth Unger and Jennifer Cope and a question-and-answer session with Drs. Systrom and Unger.

Recording:

https://www.youtube.com/watch?v=rN-JESTenjE

Transcript: https://www.cdc.gov/me-cfs/pdfs/SEC-transcript-December-2022-508.pdf
Slideshow: https://www.cdc.gov/me-cfs/pdfs/sec-systrom-2022-508.pdf

 

From: Brimmer, Dana (CDC/DDID/NCEZID/DHCPP) (CTR)
Sent: Tuesday, April 4, 2023 10:35 PM
To: MECFS-SEC (CDC)
Subject: Mark Your Calendars - CDC ME/CFS SEC Call May 17, 2023 3:00pm Eastern Time



MARK YOUR CALENDARS


May 17, 2023

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/1605335113?pwd=UFdKbkpsbG45TkVWMVNXY05WWDRoZz09

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 1-646-964-1167

MEETING ID: 160 533 5113

Passcode: 23622158



Meeting Agenda

Welcome and Meeting Overview

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

Guest Speaker: Jack Skarbinski, MD

Department of Infectious Diseases, Kaiser Oakland/Richmond, California

Assistant Program Director, Kaiser Permanente Northern California HIV Fellowship

“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like Illness Following COVID-19 in a Large Integrated Health System: Findings from the STOP ME/CFS Study”

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 will be available prior to the call.

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.

 

Merged thread

https://amp.cnn.com/cnn/2023/05/05/politics/rochelle-walensky-leaving-cdc-director-job/index.html

Thread from @JaimeS

Not sure I understand the eugenics reference.


https://twitter.com/user/status/1654542081581514759

 

The CDC with Walensky as its public face has consistently rolled back public health measures which kept COVID from spreading under the eugenic logic that people at risk of death/disability from infection are expendable.

 

This meeting is on a less than one hour wherever you are in the world
In advance of this meeting, the CDC have today posted this update on their ME/CFS program
https://1drv.ms/b/s!AoHfldspRkWU0oE8AVYli3_xxVP9jA?e=6tgC6K