USA: Centers for Disease Control (CDC) - Post Covid Conditions: Interim Guidance, June 2021, updated June 2024

https://twitter.com/user/status/1404645440373547008

 

https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html

 

Ugh. There's always a poison pill, uh?

Hopefully not too much is made of this but let's be honest, the ideologues won't care what's in this anyway, whether this bit is there to placate them or not.

This pretty much sounds like the first actually competent and accurate use and description of PEM in an official document. It's been there before but never with an understanding of what it is. And it only took half a century! Chronic medicine truly moves at the speed of molasses.

 

ME/CFS, Fibro, PTLDS, Mast cell disorder, dysautonomia, and now long-haulers. What a fraternity. Good to know the CDC has "established symptom management approaches". No worries.

 

https://twitter.com/user/status/1405373504246059009

 

CDC Clinician Outreach and Communication Activity Webinar: "Evaluating and Caring for Patients with Post-COVID Conditions" took place on Thurs 17th June.

Overview

During this COCA Call, clinicians will learn about the Centers for Disease Control and Prevention’s new interim guidance which provides a framework for healthcare providers in their initial assessment, evaluation, management, and follow-up of persons with possible post-COVID conditions. Post-COVID conditions refer to the wide range of physical and mental health consequences experienced by some patients that are present four or more weeks after SARS-CoV-2 infection, including by patients who had initial mild or asymptomatic acute infection. Post-COVID conditions are still being characterized and include symptoms such as cognitive difficulties, fatigue, headache, dyspnea, and palpitations. Subject matter experts, physicians, and patient representatives from across the United States collaborated to develop the new guidance. Rapid recognition by healthcare providers of patients with post-COVID conditions and multidisciplinary care using the assessments and approaches described in this guidance could improve the wellbeing and treatment of people with post-COVID conditions.

Recording at https://emergency.cdc.gov/coca/calls/2021/callinfo_061721.asp

 

#MEAction article from June 16:

CDC releases post-COVID guidance: 4 takeaways for ME/CFS

Here are the 4 takeaways listed:

1. ME/CFS is in included in the guidance

2. Long COVID patient input is making a difference

3. ME advocacy to CDC built a foundation for Long COVID

4. ME/CFS guidelines depend on NIH & CDC clearing the path for clinical treatment trials

 

Trial By Error: #MEAction’s Chronic Illness Survey; Patients’ Research Informs CDC’s Long-COVID Advice

https://www.virology.ws/2021/06/15/...ch-informs-cdcs-long-covid-advice/#more-16069

 

The page of the original interim guidance seems to be deleted now and there is a new informational page for long covid on the CDC website:

Long COVID Basics

Key Points

• Long COVID is a serious illness that can result in chronic conditions requiring comprehensive care.
• Long COVID can include a wide range of ongoing symptoms and conditions that can last weeks, months, or even years after COVID-19 illness.
• Anyone who had a SARS-CoV-2 infection, the virus that causes COVID-19, can experience Long COVID, including children.
• COVID-19 vaccination is the best available tool to prevent Long COVID.
• Living with Long COVID can be difficult and isolating, especially when there are no immediate answers or solutions.

I haven't checked it in detail yet, so I don't know how different it is from the previous, interim guidance.

 

I kind of skimmed through it. Is it really just two pages? I somehow thought the interim guidance had more info than this one, but I may be mistaken. This one seems to be quite short and vague. It mentions ME/CFS once as a similar condition and that such conditions are often misunderstood and lead to a delay in diagnosis etc. There is also a quick mention of PEM as a symptom but that's it. I haven't seen pacing. I kind of have this impression that the previous one was more detailed somehow but again, I may be wrong.

 

Pretty weak. I saw the CDC tweet about the NASEM report, which has loads of references to ME/CFS, PEM and the rest.

Damn do they move slowly. You can always excuse moving slowly when the quality is there, but instead what we mostly see is low speed and low quality, all at high cost. By project management standards, you can't really do any worse. Usually you have to compromise one to get the other two, but here it's... ugh.

 

And they are still beating the dead horse of "unexplained symptoms".