Haven't heard anything about this..The more awareness the better. Informed by the IOM report I'm sure they will do a good job. They note the low diagnostic rates. Anything that increases diagnosis is good for us in many ways including advocacy.
Besides that they note that: 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
They want to get on NPR - this is all good in my book! 2) produce segments that are broadcast on NPR's Morning Edition and on the NPR website
The CDC is obviously putting some more money into ME/CFS
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.
Besides that they note that: 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
They want to get on NPR - this is all good in my book! 2) produce segments that are broadcast on NPR's Morning Edition and on the NPR website
The CDC is obviously putting some more money into ME/CFS
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.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
