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

 

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.

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?

 

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:

he also goes on to use 'chronic fatigue' for quite a while.

his 'history' of the disease is also a bit off

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 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.

 

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.

 

Says everything you need to know about that presentation.

 

Upcoming CDC ME/CFS webinar on Tues, December 6
https://www.cdc.gov/me-cfs/programs/meetings.html
including:
"Neurovascular Dysregulation Underlies Exercise Intolerance in ME/CFS" by David M. Systrom, Jr., MD

 

https://twitter.com/user/status/1599833578640113664

 

For those who live in my flat, in the UK, google informs me that is 8PM, on the 6th of December, 2022. Today (local time, to me).

 

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.

 

Phone back and say PoTS

 

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.

 

Am I right in thinking that it's at 8pm UK time, and there is no need to register first? The zoom link is on the page already.

edit: sorry @Wonko. I read your 8pm as 3pm. Eyes or brain? Not sure.