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The CDC is soliciting an RFI for broadcasting promotion of CFS

Nielk

Senior Member
Messages
6,970
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.


Synopsis:
Added: Jul 27, 2015 10:52 pm
Sources Sought/Requests for Information (RFI)
The Centers for Disease Control has developed this Sources Sought advertisement as a means of conducting market research and to request capabilities and briefing statements of interest from contractors to perform services promoting public awareness of Chronic Fatigue Syndrome.


Nature of Performance Work Statement
Title: Chronic Fatigue Syndrome (CFS) Initiative
Background


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.


CFS symptoms vary over time; the change could be day to day, week-to-week. Hence, CFS patients often describe their days by good days vs. bad days. People with CFS often can no longer carry out daily activities. On a very good day, they might involve some light housework such as hanging up towels, putting away my shirts and pants, feeding the pets, or cutting up some fruit at the kitchen table. On a typical bad day, they might be limited to activities such as walking out to the kitchen, getting breakfast, reading, and walking back to bed at night, with their family members taking over all the other tasks. Some patients portrays their illness as invisible illness because lack of understanding and support from social and medical communities.
Although over 90% of physicians has heard about CFS, many physicians still show confusion in how to treat and manage the illness. Further, only 60% of the general public has ever heard of CFS. Of these, only 10% of the general public had heard of CFS in the past few months, with half hearing about CFS on television and half in consumer magazines. There has been limited effort in developing radio/audio outreach materials in CFS. We hope to model the Memory Loss Initiative (MLI) project which included support and encouraged caregivers, families, and people with memory loss or Alzheimer's disease to share their life stories. Initiative for CFS and increase CFS awareness and further facilitate the support of CFS patients and their families.


Objectives
The goal of this work is to increase awareness of CFS through the use of public radio/audio recording. 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; and 3) increase awareness of CFS and further facilitate the support of loved ones and society as a whole to improve the quality of life for patients with CFS.


Scope of Work
The contractor shall provide all labor, expertise, equipment, materials, supplies, and perform all services required to carry out the work under this contract. CDC will identify subject matter experts to serve as a steering committee or reviewers of the content.
In the base year of this contract, the contractor shall produce 4-6 radio/audio interview recording based on the general interview guide submitted by the CDC. Upon completion of the developed interview recording, contractor shall disseminate these interview stories to the public on their website, Listen Page, and their other established channels. The contractor will also provide transcripts of the interviews on their Listen Page as an alternative option for those with disabilities.


For the Option Year periods, the contractor shall also produce radio/audio recording of 4-6 interviews.


Base Year:
Performance Period: 09/21/2015 to 09/20/2016
Deliverable Delivery Date
Radio/audio recording and transcripts of 4-6 interviews 120 days after the award date
Dissemination 10-12 months after the award date


Option Year 1:
Performance Period: 09/21/2016 to 09/20/2017
Deliverable Delivery Date
Radio/audio recording and transcripts of 4-6 interviews 120 days after the award date
Dissemination 10-12 months after the award date


Option Year 2:
Performance Period: 09/21/2017 to 09/20/2018
Deliverable Delivery Date
Radio/audio recording and transcripts of 4-6 interviews 120 days after the award date
Dissemination 10-12 months after the award date
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
This is AMAZING! They are looking to create a 3 year CFS public education campaign! Isn't this what we want? The entity that produces the PSA's will even "provide a subject matter expert" to help!

As far as the name goes, no matter which name they choose, they can't win! I hate the name, too, but keeping it has it's merits. Doing so will allow the benefit of building on current awareness of both medical and non medical providers. It will also avoid the medical, media, and public sneering at the renaming as a ridiculous attempt to placate the crazies, which could easily be the outcome of such a campaign. It makes logical sense to build awareness first and rename after more is known about the etiology. The renaming could then be very powerful, instead of just a joke.

This is forward progress, not perfection. Nothing much in life is perfection. Let's take the progress. Support the progress. If I worked for the CDC, trying to help this patient population, and if I were met with angry critique of everything I did, I would rotate off of the assignment as soon as I could. My replacement would likely be someone who didn't give a crap and would accomplish far less. Our critique will not stop this, it will just irritate the human beings trying to help us at the CDC.

This is good. It's not perfect, but it's good!
 

Nielk

Senior Member
Messages
6,970
This is AMAZING! They are looking to create a 3 year CFS public education campaign! Isn't this what we want? The entity that produces the PSA's will even "provide a subject matter expert" to help!

As far as the name goes, no matter which name they choose, they can't win! I hate the name, too, but keeping it has it's merits. Doing so will allow the benefit of building on current awareness of both medical and non medical providers. It will also avoid the medical, media, and public sneering at the renaming as a ridiculous attempt to placate the crazies, which could easily be the outcome of such a campaign. It makes logical sense to build awareness first and rename after more is known about the etiology. The renaming could then be very powerful, instead of just a joke.

This is forward progress, not perfection. Nothing much in life is perfection. Let's take the progress. Support the progress. If I worked for the CDC, trying to help this patient population, and if I were met with angry critique of everything I did, I would rotate off of the assignment as soon as I could. My replacement would likely be someone who didn't give a crap and would accomplish far less. Our critique will not stop this, it will just irritate the human beings trying to help us at the CDC.

This is good. It's not perfect, but it's good!

I don't see it that way. Perpetuating the idea that this is a "fatiguing illness" is not progress.
 

worldbackwards

Senior Member
Messages
2,051
Not being a US citizen, I'm not really up with this, but I seem to recall an US ad campaign towards the end of the last decade where they claimed that there were 4 million sufferers. I'm not really sure that this will end well.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
One concern is - will those doing the editing understand this disease and ensure that the final product accurately conveys our reality?
It sounds like the audio is expected to include interviews, presumably with patients.

The IOM committee was made up of many ME/CFS experts, and considered the input of patients and care givers, so they know where to find experts.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
I guess I would rather they spent the money on research. There was a public awareness campaign about CFS several years ago - I think I saw a spot on TV, saying basically CFS is a real and serious illness. I think it was sponsored by the surgeon general. And that was the end of that. Although they do sound like they have a clue of what it can be like:

CFS symptoms vary over time; the change could be day to day, week-to-week. Hence, CFS patients often describe their days by good days vs. bad days. People with CFS often can no longer carry out daily activities. On a very good day, they might involve some light housework such as hanging up towels, putting away my shirts and pants, feeding the pets, or cutting up some fruit at the kitchen table. On a typical bad day, they might be limited to activities such as walking out to the kitchen, getting breakfast, reading, and walking back to bed at night, with their family members taking over all the other tasks. Some patients portrays their illness as invisible illness because lack of understanding and support from social and medical communities.
 

Nielk

Senior Member
Messages
6,970
Do the different US health agencies communicate with each other? We are way post the IOM report and awaiting HHS' response to the IOM proposed criteria and SEID name. Yet, the CDC is seeking to propagate the Fukuda criteria and the CFS name?
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
This is an opportunity for us to control the final product!

Send this RFI to everyone you know of who would be good at creating the spots!
 

Snowdrop

Rebel without a biscuit
Messages
2,933
It's true this could be super great or a disaster.
After the IoM process turned out better than I anticipated I'm willing to think there's a chance that this too could be good.
Things can and do change but always much more slowly than we need or would like.

It's possible that there is communication coming across the pipe (between gov't agencies) that is motivated by the momentum of change toward ME/cfs.

At any rate let's hope there is opportunity as patients to have a great deal of input into getting across the severity and biologic nature of ME/cfs.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
By the way, I don't read this as a request for patient input. Their RFI is to contractors.
Right. Certainly someone in the ME/CFS community must have a family member or friend with the skills and motivation to take this on.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
This is potentially progress. Part of progress, when it comes, will be educating the medical community and the public. But of course, we want it to be accurate information as innacurate information could make matters worse. I suspect what we will get is something that on balance is of benefit but which also has some flaws, but that is just a guess and we will have to see. I hope the right people get involved in this and I hope we can influence it in some way to increase the chances of a good outcome.