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

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)

 

Here in Canada the focus on anxiety and depression came before addressing physical symptoms, once organ damage was ruled out. So dyspnoea and shortness of breath without lung damage meant that you collected an anxiety diagnosis, maybe depression as well if you cried in the dr’s office.

The in-person long-Covid clinics have pretty much shut down in my province, but they are still doing online group sessions that focus on self-management and ‘wellness’.

 

From recent studies not showing those, I suspect that a large % of patients are told so in a consult, maybe put on their medical record as a note, but it seems to be rarely actually coded. Which suggests that they know it's BS, as otherwise they would code it. But most healthcare records-based studies don't have massive amounts of those, and that's the only explanation given what patients are commonly told. And of course most of the LC clinics don't record anything and many don't even have MDs on staff.

Very strongly reminds me of a recent leak of Tesla internal communications where they used coded language to talk about defects so as to avoid, you know, recording any of it. Mass distortion of medical records, both at the granular patient level and at the high-level population data. About as foolish as it gets.

It's amazing how Don't look up kind of got memory-holed, even as we are living multiple versions of the same.

 

The cdc has on their website, 90% of pwME hasn’t been diagnosed. 90%!!! Sometimes I feel like us pwME deal with lots of hyperbole from the researchers and government agencies.

 

A CDC random digit prevalence study in the 2000s found only 16% had been diagnosed.
A Jason et al random digit prevalence study published in 1999 found only 9% had been diagnosed.

 

Also a fairly recent Leonard Jason study found less than 5% of children had been diagnosed.

 

Not a hyperbole at all. if you think about it, a majority of doctors are not aware of what is Me and how to diagnose it properly. Then there is a wide range of severity which means that those who can still work but struggle are most often missed by the medical system, and offered more general advices such as eat better, sleep better, exercise more and/ or lose weight. The patients who are uninsured, poor and uneducated and those who are visible minorities, immigrants,may not even access health care and when they do may have poorer care.

 

Other misdiagnoses/incomplete diagnoses might include:

Fibromyalgia, Migraine, chronic pain, IBS, back pain, maybe (misdiagnosed) Lyme & other-tickborne infections if get questionable private tests, glandular fever, etc.

 

And then the FND diagnosis and similar travesties.

 

Good point.

In the US, which tests for "Lyme & other-tickborne infections" are: a) unquestionable, and b) not private?

Also, I'm unclear whether, when you write "misdiagnosed", that would include undiagnosed.

 

Evaluating and Supporting Patients with Long COVID in Returning to Work

https://emergency.cdc.gov/coca/calls/2023/callinfo_061523.asp

Transcript
https://emergency.cdc.gov/coca/ppt/2023/061523_transcipt.pdf

Slides
https://emergency.cdc.gov/coca/ppt/2023/slides_061523.pdf

Greg Vanichkachorn, MD, MPH, FACOEM
Occupational and Aerospace Medicine Physician
Medical Director, Mayo Clinic COVID Activity Rehabilitation Program
Mayo Clinic

https://www.mayoclinic.org/biographies/vanichkachorn-greg-m-d-m-p-h/bio-20470118

Yesterday I quickly skimmed the slides and randomly started listening to a few minutes of the video and just happened to listen to the sections that I quoted above. The transcript wasn't posted yet, I was too sick to post the links here and I had to sleep (I have sleep reversal).

I just got up and came back to this webinar to listen to more of the video and post the information here. For some reason the video is now a different video, even though it has the same name of what it was and is supposed to be. I have no idea what is going on at the CDC. The transcript is now posted though and the slides are still posted.

Since they changed the video and I'm too sick to read more of the transcript, I can't do anymore.

Edited to add:

 

Not a damn clue. Not even one. There appears to be a complete inability to process what's in front of them. They're content with taking credit for natural recoveries and letting everyone else, being a minority, to rot. Once patients are out of their clinics, we just cease to exist as real human beings, out of sight, out of mind. And that's for the tiny few who ever get to one. Appalling.

 

New CDC Director, Mandy Cohen, was sworn in on July 10th.

New CDC director brings health care, public health experience to agency facing aftermath of pandemic
https://www.cnn.com/2023/07/11/health/cdc-director-mandy-cohen/index.html


In N.C., Mandy Cohen built bridges to GOP. Can she find consensus as new CDC director?
https://www.statnews.com/2023/07/14/mandy-cohen-cdc-director-republicans/