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

A little broader than just vaccines, but —

Walensky, Citing Botched Pandemic Response, Calls for C.D.C. Reorganization

https://www.nytimes.com/2022/08/17/us/politics/cdc-rochelle-walensky-covid.html

WASHINGTON — Dr. Rochelle P. Walensky, the director of the Centers for Disease Control and Prevention, on Wednesday delivered a sweeping rebuke of her agency’s handling of the coronavirus pandemic, saying it had failed to respond quickly enough and needed to be overhauled.

“To be frank, we are responsible for some pretty dramatic, pretty public mistakes, from testing to data to communications,” she said in a video distributed to the agency’s roughly 11,000 employees.

Dr. Walensky said the C.D.C.’s future depended on whether it could absorb the lessons of the last few years, during which much of the public lost trust in the agency’s ability to handle a pandemic that killed more than 1 million Americans. “This is our watershed moment. We must pivot,” she said.

Her admission of the agency’s failings came after she received the findings of an external examination she ordered in April amid scathing criticism of the C.D.C.’s performance. The report itself was not released; an agency official said it was not yet finished but would be made public soon.

Dr. Walensky laid out her basic conclusion from the review in candid terms: The C.D.C. must refocus itself on public health needs, respond much faster to emergencies and outbreaks of disease, and provide information in a way that ordinary people and state and local health authorities can understand and put to use.
 
A file with the slides from Dr Gluckman’s talk is now available here:
https://www.cdc.gov/me-cfs/pdfs/SEC-Call-Gluckman-Deck-5-13-22-508.pdf

I've not read the transcript of his talk that was posted, but the slides have a troubling tone. Maybe I shouldn't comment without reading the transcript but I just wrote this out for myself.

"SUCCESSFUL MANAGEMENT IS ACTUALLY VERY
REWARDING FOR THE CLINICIAN"

"Basic Tenents of Management
• Educating patients about the disease"

"We know a great deal about it"

I have mixed feelings about how rewarding he finds it to educate patients on the great deal we know about CFS.

The history of CFS summary he provided seemed to reflect a certain viewpoint.

ME/CFS: General Steps in Management
1. Give the patient enough time and do a thorough
evaluation
2. Reassure the patient that the symptoms are real
3. Discuss problem of patient having to deal with the
validity of his/her disease
4. Do not underestimate the benefits of trust, support,
and reassurance that you can provide
5. Explain to the patient that this is not a new disease –
we know a lot about it
• Review the history of CFS in detail
6. Avoid the debate over psychogenic vs organic origin

This is like a summary of the approach to CFS I find most unpleasant to deal with.

With the review of the history of CFS in detail, will that include explaining the problems the surround the promotion of CBT and GET?

ME/CFS: Specific Steps in Management
1. Tell the patient that there is no cure for ME/CFS,
but there are treatments that help
2. “Re-frame” expectations – the patient has a
disability and should have appropriate expectations
3. Suggest very gradual graded exercise
• Inactivity contributes to increased fatigue and
depression
4. Suggest Cognitive Behavioral Therapy
5. Treat depression aggressively
 
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looking at both the 'transcript' and the slides.
points out its important to differentiate between 'chronic fatigue' and 'chronic fatigue syndrome'.......

then when talking about the iom report:
Uh, um, it's not just being tired once in a while. These people, it gets in the way of their work; it gets in the way of their fun; it gets in the way of their social lives and these by this definition has to persist for six months, or more, I will comment on that in a second.
A second of the three major criteria is post exertional malaise. Exertion is sort of an expanded in that that doesn't have to be physical exertion. It can be, it can be psychological exertion; it can be you know working at work and using your brain and it can be motional, emotional exertion stresses any of those things people with chronic fatigue [syndrome] are particularly susceptible to making it worse and typically it's not immediately it's like the day after they have a setback. Day after they've had some sort of stressor. And the third component is unrefreshing sleep. They get up in the morning, they don't feel refreshed.
he also goes on to use 'chronic fatigue' for quite a while.

his 'history' of the disease is also a bit off
1934 Myalgic encephalitis

1930-50s Chronic brucellosis

1985 Chronic EBV

1980-90s

CMV

HSV

HHV6

Yeast

Total allergy syndrome

Chemical sensitivity syndrome

Chronic Lyme disease

2000s

XMRV

Other retroviruses


One of the things that's clear and those of you that that that care for patients, I think you understand this easily that these are not malingerers, they want their prior lives back their prior usually very active lives back, they’re not faking something to get out of work, they want to work. They want to go back to their triathlons or whatever active things they were doing. They're not hypochondriacs they didn't spend their adult life in and out of health care providers offices with one complaint or another, these were highly functioning people. And as I've already mentioned, you can find multiple and more and more studies are showing these multiple pathophysiological changes and abnormalities in immune system and cellular metabolism, neuroendocrine system, autonomic nervous system, so there's stuff going on and just because we don't fully understand it, one shouldn't take the easy way out and call it just in their heads, just a psychiatric illness.


Well, this is totally controversial, I understand that. But I am one of those that is a believer in exercise. But it just has to be done very, very gradually because they are very susceptible to setbacks, and they want their lives back, their active lives back and they unless you're really rein them in, they're going to overdo it, and have a setback.
CBT, little bit controversial too but to me less so. It certainly doesn't help everybody, but some people who have symptoms that are otherwise unfixable do get some benefit out of CBT. It certainly doesn't have side effects so taking medications either prescribed or complementary therapies, of one sort or another have potential for side effects. You do not get diarrhea from CBT you do not get rashes from CBT you don't get liver injuries from CBT, so I suggest people give it a try.

I get the impression that he is not very aware of the different severities as a lot of it sounds very trivialising and, for want of a better description, very 'mild'.
 
I've never seen a single person mention that CBT helped with symptoms. Obviously. What a ridiculous idea. I did see a few, maybe a handful over the years and I include Long Covid, who said it helped them a bit to deal with their reality, however that's basically like punching someone in the face and giving them something for it.

I never, ever, see anyone mention CBT other than that, and it's always very underwhelming. The obsession medicine has with this is completely out of proportion with real life.
 
I've never seen a single person mention that CBT helped with symptoms.

I did 4 sessions about 4 years ago which was half of the full course. Up to the point where I found it problematic it was largely benign and unhelpful. But where it became problematic was when 2 able bodied women were telling 6 severe ME/CFS patients who were all bed bound to go out for a coffee with friends and then work upwards and do more and more, because its proven to work. This is where GET became present as the key idea within CBT, it was the insidious approach of ever increasing activity as a solution to the mental health issue. Actively harmful advice for anyone with PEM and when they wouldn't even accept this I stopped going as did the others. So I would argue CBT as I saw it was every bit as harmful as GET if you actually did what they told you to.
 
They're not hypochondriacs they didn't spend their adult life in and out of health care providers offices with one complaint or another, these were highly functioning people.
This statement applies to 99% of the people here, but I wish doctors would be more inclusive and acknowledge that there are pwME who had serious disabilities before getting ME. I also feel that this statement is somehow BPS-tinged. Like, if the BPS ideology didn't exist, nobody would feel the need to say this. It would be better if people explicitly acknowledged the existence of BPS when making statements like this.
 
I booked an appointment with him last week. He is 11 months out. Per the woman in his office, if my diagnosis was just POTS... Then, I could get in sooner with one of his assistants, but because I said I have POTS/CFS... I have to wait to see him.

Once I saw all of the testing he does from blood flow, to muscle, to mito, and autoimmunity, I had to book. I highly suspect I am in the mito group. I for sure have POTS but also PEM, which some of my online POTS friends don't have.
 
If I do, then I won't get to see Systrom is what she lead me to believe... I will call in every couple weeks to check on cancelations.

I've already seen Dr Grubb, Dr Chemali, and Dr Klimas. Everyone one of them has picked up clues and has eliminated a lot of things my illness could be.
 
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