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

Webdog said:
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.
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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. :mad:
This info comes from Healthwise, so you'll find identical on other provider sites and places such as WebMD.
 
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Webdog said:
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.
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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.
 
Cuts to Prevention and Public Health Fund Puts CDC Programs at Risk
Reductions from the budget passed today and a $750-million shift of funds to the Children’s Health Insurance Program add pressure to public health initiatives, including immunizations and outbreak responses.
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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.
 
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...
Fred Fridinger said:
Evaluating Communication Campaigns
Posted on April 2, 2018 by Fred Fridinger, DrPH, Senior Health Communications Specialist, Office of the Associate Director for Communication

Health communication and marketing campaigns that promote positive behavior change are a cornerstone of public health and behavioral science. Designing and implementing quality campaigns on a tight budget and in an urgent timeframe is a challenge that most health communication professionals share. Research and evaluation are critical for a successful campaign. CDC is using leading research and evaluation methods to develop quality campaigns, while keeping costs low and sticking to tight timelines.
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CDC said:
Fred Fridinger is a Senior Health Communications Specialist in the Office of the Associate Director for Communication (OADC). During his 22- year career at CDC, he has worked on various campaigns and communication efforts, including those addressing moderate physical activity and healthy eating, genetics, chronic fatigue syndrome, and Zika prevention. In his current position, he oversees the market research function for OADC, which involves the Porter Novelli Styles and Nielsen Scarborough syndicated data bases.
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Edit: There is a comments section on the blog.
 
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....)
 
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:



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.
 
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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. ;)
 
https://www.cdc.gov/Features/cfsawarenessday/index.html
CDC said:
May 12 is ME/CFS and Fibromyalgia International Awareness Day.

Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) is a serious, long-term illness characterized by substantial disability affecting daily activities. It is accompanied by profound fatigue that is not relieved by rest. While varying by person and affecting many body systems, symptoms include severe fatigue, unrefreshing sleep, dizziness, problems thinking and concentrating, pain, and worsened memory. Post-exertional malaise (PEM), a distinguishing feature of the illness, is the worsening of symptoms after physical or mental activity.
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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)
 
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