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

[NelliePledge]

Ironic to have Kaiser Permanente presenting. I remember they really dragged their feet for years when @Webdog was pursuing them to change their web content on ME.

 

[Hutan]

But @Webdog really made a difference, and there was some substantial changes within at least part of Kaiser - see here:
Trial By Error: Kaiser Permanente Changes Course
I have used for advocacy a statement put out by one Kaiser doctor about how he had changed his mind on ME/CFS, it was that good.

 

[Tom Kindlon]

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

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)

 

[Trish]

The figures for ME/CFS like illness without Covid-19 seem far too large at about 2% of their sample. They report them all having the required 4 symptoms for IOM diagnosis, but I can't help wondering how well they assessed PEM. 60% of them are working and only around 20% are unable to work due to disablity. And a large proportion are diagnosed with anxiety and/or depression. I suspect either a very skewed sampling method, or a lot of misdiagnosis. On the other hand, the percentage with ME/CFS like illness following Covid infection seem low.

 

[Milo]

And a large proportion are diagnosed with anxiety and/or depression

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’.

 

[rvallee]

And a large proportion are diagnosed with anxiety and/or depression.

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.

 

[cfsandmore]

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.

 

[Dolphin]

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.

 

[Sean]

Don't know if that 90% stat is correct, but would not surprise me if it was.

I suspect ME, especially so called mild-moderate, is going to turn out to be quite common and the primary explanation of a lot of stuff currently labeled something else.

 

[Dolphin]

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.

 

[Milo]

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.

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.

 

[NelliePledge]

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.

Diagnosed with depression, anxiety etc etc

I quote from the GP I first discussed a CFS diagnosis when I first discovered this possibility. “ We don’t like to give that diagnosis it is better to treat the symptoms.”

 

[Dolphin]

Diagnosed with depression, anxiety etc etc

I quote from the GP I first discussed a CFS diagnosis when I first discovered this possibility. “ We don’t like to give that diagnosis it is better to treat the symptoms.”

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.

 

[Milo]

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.

 

[duncan]

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

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.

 

[Laurie P]

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

And that's because individuals with Long COVID experience post-exertion malaise, as
mentioned by my colleague, Dr. Howard. Post-exertional malaise is the onset of fatigue and flu-like symptoms after physical or mental activity. Now, if that sounds strange, this is something that has been well documented in those folks who have myalgic encephalomyelitis or chronic fatigue syndrome. In fact, 30% of patients with those conditions report having post-exertional malaise.

Rather, what we use are patients' individual experiences, either with exercise activities or also household duties or work duties, to set a baseline and then we slowly increase from there. So let's say someone can walk for 10 minutes at a time or do a load of laundry and not experience any post-exertional malaise. We will start there, and then if they tolerate that for a good week, increase maybe 13 minutes of walking the next week and or doing two loads of laundry. It's important to remember that this pacing strategy applies not just to mental activities, but also physical activities and activities at work. This may seem simple, but this pacing strategy is something that we spend a lot of time helping patients adapt to and reiterate during the recovery process. We also sometimes involve physical therapy and occupational therapy as part of this process.

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

Greg Vanichkachorn, M.D., M.P.H.
Aerospace Medicine Specialist, Family Physician, Occupational Medicine Specialist

Biographical summary

• Dr. Van has over a decade of experience helping injured workers manage their work related injuries and the complicated psychosocial factors that can affect recovery and return to function.
• He uses skills in cognitive behavioral therapy to better understand patient's concerns.
• Dr. Van is a passionate endurance athlete that strives to help patients with lifestyle changes.
• As a family physician, Dr. Van considers the patient as a whole, not just an individual system or condition.
• He is a private pilot passionate about the optimal health of pilots and the safety of our skies.
• Dr. Van is a certified commercial driver medical examiner and is dedicated to helping drivers stay healthy and keeping our roadways safe.

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:

CDC, our planners, and presenters wish to disclose they have no financial relationships with
ineligible companies whose primary business is producing, marketing, selling, reselling, or
distributing healthcare products used by or on patients, with the exception of Dr. Greg
Vanichkachorn, who would like to disclose that he's a consultant for Highmark. All of the
relevant financial relationships listed for these individuals have been mitigated.

 

[Trish]

That's awful. They are describing GET and calling it pacing.

 

[rvallee]

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.

 

[Sean]

Rather, what we use are patients' individual experiences, either with exercise activities or also household duties or work duties, to set a baseline and then we slowly increase from there. So let's say someone can walk for 10 minutes at a time or do a load of laundry and not experience any post-exertional malaise. We will start there, and then if they tolerate that for a good week, increase maybe 13 minutes of walking the next week and or doing two loads of laundry. It's important to remember that this pacing strategy

That. Is. Not. Pacing.

Incompetence, or brazen dishonesty? Coz they are the only options on the table now.

 

[Laurie P]

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

https://en.wikipedia.org/wiki/Mandy_Cohen

Mandy Krauthamer Cohen is an American internist, public health official, and healthcare executive serving as Director of the U.S. Centers for Disease Control and Prevention. On June 16, 2023, President Joe Biden announced his intent to appoint Cohen to the position and she was sworn in on July 10, 2023.[1][2]

Cohen earned a bachelor's degree in policy analysis and management from Cornell University, a medical degree from the Yale School of Medicine, and a graduate degree in public health from the Harvard T.H. Chan School of Public Health. From 2017 to 2021, she served as the Health Secretary of the North Carolina Department of Health and Human Services. Before that, Cohen was the chief operating officer and chief of staff at the Centers for Medicare & Medicaid Services during the Obama Administration. She also served as the Deputy Director of Comprehensive Women's Health Services at the United States Department of Veterans Affairs, and is a founding member and former executive director of Doctors for America.

Cohen was listed as one of the Top 25 Women Leaders in Healthcare by Modern Healthcare in 2019. In 2020, she was awarded the Leadership in Public Health Practice Award by Harvard University’s T.H. Chan School of Public Health, and the American Medical Association presented her with the AMA Award for Outstanding Government Service. In 2021 she was elected to the National Academy of Medicine. In 2022, she was appointed as the Chief Executive Officer (CEO) of Aledade Care Solutions, a healthcare company.

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/