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

This thread includes posts on general news from the CDC and ME/CFS news including stakeholder calls. Several threads have been merged.

 

Hadn't been aware of this:

https://twitter.com/user/status/925779311805607936


I believe this is 7pm UK time.

 

More details on it :

https://www.cdc.gov/me-cfs/programs/meetings.html

 

Thanks - interesting agenda.

 

Transcript now available

https://www.cdc.gov/me-cfs/pdfs/MECFS-SEC_11-2-2017-508.pdf

 

https://www.cdc.gov/me-cfs/pdfs/me-cfs-children-healthcare-pros.pdf

https://twitter.com/user/status/944740589261807616


https://twitter.com/user/status/946821722665373696

 

https://www.cdc.gov/me-cfs/pdfs/me-cfs-children-parents.pdf

https://twitter.com/user/status/946827653411196929

 

https://www.cdc.gov/me-cfs/pdfs/me-cfs-children-educators.pdf

https://twitter.com/user/status/946808117798621184

 

Where is the CDC recommendation for rest and pacing? Isn't that what children need to have any hope of recovery?

ETA: "limiting physical activity" is along those lines, but I feel it needs to be emphasized more that substantial rest is needed and to avoid the push/crash cycle.

 

CDC updated its "Information for Health Professionals" page in its ME/CFS section on Dec 15. The page now offers links to the following documents:

- IOM report (& the supplemental documents)
- IACFSME Primer
- 2016 Canadian guideline (draws heavily on both the IOM report and IACFSME Primer)
- 2017 Paediatric Primer

I'm not sure how many of these were on the page before the update, but it's great to see CDC drawing on good quality documents!
https://www.cdc.gov/me-cfs/healthcare-providers/index.html

 

The page still says "New content coming end of 2017." If so, they will have to publish it over the weekend.

 

I noticed that too. Given that the page was updated on Dec, it's unclear whether there is more to come, or whether the Dec 15 update was the new content referred to, and whoever updated the page just forgot to remove that sentence. I'm inclined to think it's the latter.

 

I agree. It's good that this fact sheet doesn't emphasise the need for exercise, pushing through, or challenging false illness beliefs, but there isn't enough emphasis on the importance of rest and pacing, and it doesn't convey how severely unwell some may be (ie: attending school may be out of the question for some).

 

I agree with you.

Still, the page gives the impression that after nearly a year of "working" on this, the CDC just threw up some links to external sites and didn't even bother to proofread the page. Minimal effort expended.

On the plus side, they aren't bad links.

 

@Webdog and @Simone - the CDC was originally planning on providing additional material for health case providers by the end of 2017 but I understand this material is now coming sometime in early 2018.

As far as this page - not sure but I think they might have added in links to individual parts of the IOM report. They also added the announcement of the public review period of the common data elements project

 

Thanks for the info - and welcome over to S4ME!

 

Thanks for the info.

If I recall correctly, the CDC update material was scheduled to be available summer 2017, then delayed to end of 2017. Now it’s early 2018?

Why the continued delays?

 

In case it helps to determine what has been added and what hasn't, this is a link to how it looked on the 9th December 2017 - https://web.archive.org/web/2017120...dc.gov/me-cfs/healthcare-providers/index.html

 

The Wayback Machine doesn't mention summer 2017, only end of 2017. Thanks for the link, @Andy.

That should settle it, and yet...

A PR forum post by medfeb states "So far, the update is just the page for the general public. The healthcare providers version to follow this summer."

http://forums.phoenixrising.me/inde...page-updated-30th-may-2017.52703/#post-872664

But I don't know where medfeb got their info either. A mystery indeed.


PS: The Internet Archive (home of the Wayback Machine) is very close to me, and its founder, Brewster Kahle is very well known for hiring the disabled. He recently got an award at San Francisco City Hall for his efforts.