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The CDC is soliciting an RFI for broadcasting promotion of CFS

halcyon

halcyon

Senior Member
Messages
2,482
Nielk said:
Is this a joke? CDC is the only agency still using the name chronic fatigue syndrome. They are using the Fukuda definition for diagnostic criteria.
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Personally I will be extremely surprised if the CDC rapidly switches over to SEID and the IOM criteria. They've historically been very careful to keep the ME chocolate out of their CFS peanut butter and the IOM report mixes them all together. This is counter to their historical and apparent present stance on this (based on the separation of the two in the ICD). I also think they suffer a bit from 'not invented here' syndrome. I just can't see them dumping Fukuda in the trash can after all this time in favor of someone else's unvalidated criteria.
 
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geraldt52

Senior Member
Messages
602
30 years, and the CDC is "soliciting information" for a 3 year campaign to create awareness of CFS.

Funny, because there are plenty of people around me who are already quite aware of CFS, but I haven't noticed that it makes them give a damn, any more than the CDC does. At the rate the CDC moves, I will have been dead 20 years before they fund the first meaningful research. Just another useless exercise in making themselves look like they're doing something, while doing nothing. It's just pathetic, and nauseating.

Thank god there are now serious researchers forging ahead on their own, though having to beg for private money to do so.
 
Forbin

Forbin

Senior Member
Messages
966
Here is a CDC CFS PSA from some time ago. It was uploaded in 2008, so it's at least that old.

 
V

Valentijn

Senior Member
Messages
15,786
An awareness campaign would be nice, but it has to be for the right disease. And with the Fukuda description they are giving in the advertisement, I think they intend the project to describe something rather vague, not ME/SEID:
Chronic fatigue syndrome (CFS) is a complex illness characterized by disabling fatigue and accompanying symptoms of prolonged post-exertional malaise, unrefreshing sleep, impaired concentration and short-term memory, muscle and joint pain, headache, sore throat, and tender lymph nodes. CFS affects more than one million U.S. adults, yet research shows that approximately 80% of persons with CFS have not been diagnosed by a physician.
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With the patient and expert push to implement SEID and spread awareness, actively educating doctors about Fukuda CFS would be oppositional to it at this point. My feeling is that they are pre-emptively trying to block SEID (or any mandatory-PEM) criteria from being understood and implemented by the public and practitioners.
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
The specific objectives are to 1) produce radio/audio recording, 2) produce segments that are broadcast on NPR's Morning Edition and on the NPR website
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This seems really odd to me. NPR is *not* a government broadcaster. It is not associated in any way with the CDC. Why would a PR campaign be aimed at one specific program? NPR is propaganda for US establishment elites, which is the group most likely to already know something about the illness. The largest group that knows nothing about the illness and has the least chance of diagnosis would be working class folks - who wouldn't be caught dead listening to NPR.

If CDC were truly interesting in informing Joe Sixpack and family, they would be targeting Dr Oz, "Entertainment Tonight", and the sports broadcasts, not that horrible Steve Inskeep and his hack associates.

It almost smells like someone at CDC trying to send some ad revenue to their NPR friends.
 
G

geraldt52

Senior Member
Messages
602
jimells said:
...If CDC were truly interesting in informing Joe Sixpack and family, they would be targeting Dr Oz...
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Does anyone think that if Joe Sixpack is suddenly made "aware" that anything is going to change? I've not found people in recent years to be "unaware" at all, I've just found that they don't give a damn that CFS exists, because they don't see an imminent danger to themselves...unlike say the dire threat of 100 cases of measles in the entire U.S., which they are vaccinated against.

I'd gladly trade public awareness for some actual funding for the research projects already underway, projects severely underfunded, and only by the generosity of private citizens, many of whom are sick themselves. The CDC is nothing but a PR agency for itself, and I don't see Elizabeth Unger as anything other than Williams Reeves act II, who was nothing more than Steven Strauss act II. When you look at what they've done, at what they're doing, is there any other conclusion than that they don't want to know the answer?
 
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Nielk

Nielk

Senior Member
Messages
6,970
I am posting here advocate Eileen Holderman's letter to the CDC with her permission. This was in May of 2014.

Dear Dr. Unger:


Thank you for participating on my Subcommittee Teleconference last Friday. I hope you found Dr. Chia's presentation on "ME/CFS and Enterovirus," and the subsequent discussion with the invited advocates and members of the press interesting; I look forward to you sharing your impressions of the Teleconference with me.

On another note, and my primary reason for writing, is to let you know that to commemorate May 12 International ME Awareness Day, I wrote a thank you correspondence to the CFSAC CDC Web Site Review Panel Members for their contributions toward improving the CDC Web Site. As you know, for the past 4 years, I oversaw and participated on the Review Panel because the content of the CDC Web Site has been of critical concern to the ME/CFS community. After I sent my correspondence, I decided to also send a thank you letter to you, Dr. Belay, and Mr. O'Connor for your time and efforts in addressing my/the Review Panel's concerns.

As I prepared to write my thank you letter, I checked out the CDC Web Site so my final remarks would be accurate. To my surprise and dismay, I noticed CDC created a new web page to feature May 12 Awareness Day. I say 'surprise' because there was no mention of it to me or my Review Panel; and there was an opportunity to mention it as recent as last Friday during my Subcommittee Teleconference when I asked if there were any announcements from HHS - you will recall that my inquiry was met with an awkward silence. Had CDC communicated to me that they planned to feature May 12 Awareness Day with the erroneous content of the CDC Web Site, I would have objected. Furthermore, our national and international ME/CFS and FMS organizations do an exceptional job of raising awareness for these diseases so CDC need not undermine those efforts. I appeal to CDC to remove the new web page as advocates have already begun to voice their justified criticisms of the content.

For the past 4 years, my Review Panel and I have made countless suggestions to improve the CDC Web Site. While CDC did make changes to the general sections of the web site, my opinion is that most of the changes were cosmetic, not substantive. The CDC Web Site still resembles a web site for the condition of chronic fatigue instead of a web site for the neuroimmune disease of Myalgic Encephalomyelitis (aka CFS).

Below, are my specific (though not my complete list of) recommendations to improve the CDC Web Site that need to be, but have yet to be, implemented:


* remove the Resource Guide

* remove the Toolkit

* remove the expired and needless Emergency Preparedness Webinar

* remove the expired CDC/Medscape video online course

* remove all references to the Oxford Case Definition in the CME online courses

* remove references to CBT

* remove references to GET

* remove references to St. Bart's and NICE Guidelines

* remove all links to CDC psychosocial published studies on ME/CFS

* remove all implications both subtle and overt to ME/CFS as a psychogenic and/or a fatigue "condition"


Hopefully, the CDC Web Site will get on board with our 50+ ME/CFS experts and adopt the CCC in their CME courses and in all of their content, and reference the 5000+ biomedical papers on ME/CFS, and offer links to the IACFS/ME Primer and the ME ICC Primer and a section on Pediatric ME/CFS. The CDC Web Site needs to reflect the serious, disabling nature of this neuroimmune disease affecting nearly one million American men, women, and children and 17 million worldwide.

Again, thank you for the time and consideration you, Ermias, and John have given me and the Review Panel in regard to improving the CDC Web Site.


Best regards,

Eileen Holderman


cc: Dr. E. Belay, Mr. J. O'Connor, ME Community
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Eileen's editor's note as of today:

"CDC has added a section on the CDC Web Site for Pediatric ME/CFS, but not with the approval of the CFSAC Web Site Review Panel that I Chaired while serving on CFSAC."
 
L

Lou

Senior Member
Messages
582
Location
southeast US
jimells said:
This seems really odd to me. NPR is *not* a government broadcaster. It is not associated in any way with the CDC. Why would a PR campaign be aimed at one specific program? NPR is propaganda for US establishment elites, which is the group most likely to already know something about the illness. The largest group that knows nothing about the illness and has the least chance of diagnosis would be working class folks - who wouldn't be caught dead listening to NPR.

If CDC were truly interesting in informing Joe Sixpack and family, they would be targeting Dr Oz, "Entertainment Tonight", and the sports broadcasts, not that horrible Steve Inskeep and his hack associates.

It almost smells like someone at CDC trying to send some ad revenue to their NPR friends.
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If I didn't have qualms about tattling I'd report this post for political content, however flimsily veiled.
 
Nielk

Nielk

Senior Member
Messages
6,970
It is interesting to note that the CDC was one of the government health agencies who sponsored the IOM contract. It is clear that the CDC is continuing their perverted agenda when it comes to this disease. They are the ones who invented the name CFS, knowing full well that the name ME existed in the WHO and the rest of the world called it ME.
They also diverted $12.9 million ear marked for ME/CFS for other diseases. The abuses are too many to list. And their politics haven't improved, so the argument that maybe they are changing has no basis.

They ignore all advances and stubbornly hold on to their own made up data.
 
M

medfeb

Senior Member
Messages
491
WillowJ said:
don't know if this is relevant or not:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/

News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos — a novel approach to educating medical students about CFS
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This has been in the works for a while. Based on presentations at CFSAC and discussions with Dr. Unger, I understand that the standardized patient seen in the video does not have PEM - PEM is supposedly discussed in the supplemental materials only. I don't know much else but based on that, these videos are not specific to ME.

Unless I missed it, CDC has not said that they have cancelled the development of these videos.
 
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