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

Yes, not much effort expended.

 

Part of my frustration with the CDC is that while they delay, major healthcare providers such as the Mayo Clinic and Kaiser Permanente (11 million members!) continue to recommend GET and CBT for ME/CFS as if nothing has changed.

ETA: A couple current Kaiser Permanente links. Caution: reading these may increase your blood pressure.

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Using Graded Exercise to Get More Energy
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Using Cognitive-Behavioral Therapy

This info comes from Healthwise, so you'll find identical on other provider sites and places such as WebMD.

 

I don't know that we do have good evidence on what is useful for recovery, so I think it's best for the CDC to be cautious in their recommendations.

I didn't find anything annoying about that document. Amazing. Maybe just a sign I'm extra tired and not thinking things through properly?! Even if so, I'm still going to let myself feel pleased about it for a while.

 

https://www.the-scientist.com/?arti...-Public-Health-Fund-Puts-CDC-Programs-at-Risk


From what I gather, the Prevention and Public Health Fund is the exclusive source of funding for the $5.4 million CDC ME/CFS program, so I wonder could it be affected by this.

 

Déjà vu all over again http://occupyme.net/2015/08/04/no-cdc-funding-for-cfs/

 

Update here: 2019 Presidents Budget has CFS listed @ $0

https://www.s4me.info/threads/propo...for-cdc-involves-zeroing-of-cfs-program.2477/

 

https://blogs.cdc.gov/publichealthmatters/2018/04/evaluating-campaigns/

CDC blog post on "10 methods that can help you reduce costs and improve the efficacy of your communication or health marketing campaign."

Written by Fred Fridinger, who has published controversial work about CFS in the past. The campaigns talked about are intended to "promote positive behavior change", with a CDC Zika campaign being the success story.

If only the CDC could mount a campaign to change the behavior of doctors who encounter ME/CFS patients...

Edit: There is a comments section on the blog.

 

CDC addresses the latest health crisis

When the CDC does more to raise public awareness for pool peeing than ME/CFS...

 

Is it actually a disease tho? And if not is it anything to do with them? And if not why are they spending money allocated for dealing with disease on it? (Facebook ads aren't free - probably - I don't know much about it, but nothing else is....)

 

Perhaps they often use swimming pools and are concerned at hygiene standards. Clearly they do not expect to suffer from ME.

 

Hi,
I don't think I have seen this posted elsewhere but please remove (or let me know how to do so) if appropriate:

May 10, 2018
3:00 pm - 4:00 pm Eastern Time

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

participants can either call in using the following information:

Call number: 1-888-790-1949
Participant Code: 2242976​

or join the meeting using the new webinar format by clicking the link, or copying and pasting it into your browser
https://adobeconnect.cdc.gov/mefcfs/


If you have never attended an Adobe Connect meeting before, it is recommended that you test the connection before the call date:

Test your connection: https://adobeconnect.cdc.gov/common/help/en/support/meeting_test.htm

Get a quick overview: http://www.adobe.com/products/adobeconnect.html​

Meeting Agenda

3:00pm Welcome and SEC Call Overview

3:05pm Updates from CDC – Elizabeth Unger, Ph.D., M.D.

Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention​

3:15pm “ME/CFS: The Invisible Disease and its Educational Implications for Young People”

Faith Newton, Ed.D.
Professor of Education
Coordinator of Middle Level Education
Delaware State University​

3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC


Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.


Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.

 

If you want to see the time in your time zone, click here:
https://www.timeanddate.com/worldcl...r+call+10+May+2018&iso=20180510T15&p1=25&ah=1

https://twitter.com/user/status/991064057087234049

 

If you are on the CDC email list but did not receive the notice pasted above, I think it'd be good to let CDC know that.
MECFSSEC@cdc.gov
(use this same email to ask to submit questions for this call and/or to be added to their email list)

 

Bump. Less than 20 hours away.

May 10, 2018
3:00 pm - 4:00 pm Eastern Time

 

Note that the CDC "Information for Healthcare Providers" has been "Coming Soon" on the CDC website for almost a year. Apparently, the CDC and I have fundamentally different understandings about the meaning of "Coming Soon".

I think of "soon" as defined in the dictionary as "shortly" or "imminently".

However, over the past months, I've grown convinced that the CDC thinks of "coming soon" in more of a religious way. Similar to how "Jesus is coming soon", so also ME/CFS "New content is coming soon". For the CDC faithful, it's not long to wait.

 

1 hour to start.

The CDC has a new post "May 12 is ME/CFS and Fibromyalgia International Awareness Day".

 

https://www.cdc.gov/Features/cfsawarenessday/index.html

 

This is similar to last year's CDC post, but there are some changes.

 

Would someone be willing (and have the energy) to summarize the Webinar a bit?

 

Unger talking about how the CDC is trying to determine the prevalence of ME/CFS via state health agencies.

Information for Healthcare Providers "should be available this summer".

Continuing medical education for doctors via Medscape and WebMD, based on IOM report. Bateman and Montoya participating. Should be available Nov 2018.

Common Data Elements project will standardize ME/CFS data collection.

FDA recognizes critical need for ME/CFS drug trials.

That's the end of Unger's talk. I'll stop here. But the meeting is being recorded.

(After Unger, the slideshow talk is about ME/CFS in schoolchildren, including symptom management and working with schools for accomodation)