- seems promising! I'd like to see the videos that they created, but the first article seems to be in the right spirit.
I have been unsuccessful in finding the videos.
I believe @medfeb
's comment refers to another CDC project which this Aug 2015 CFSAC oral public comment asked questions about:
"To date CDC medical education has conflated ME and CFS resulting in confusion for healthcare professionals and patients alike.
I’d appreciate clarification today from CDC on a medical education initiative called “Chronic Fatigue Syndrome: Symptoms from the Patient Perspective.”
What is known so far is based on feedback from a few advocates who talked to Aspen, the contractor conducting this work. Aspen asked those advocates to not publicize the initiative because they wanted to avoid being inundated with requests.
Additional information on the initiative comes from a set of project documents apparently submitted as part of the project approval process. Dated June 2015, they include the work that Aspen discussed with advocates.
This project approval document
, includes a project description, that says this details four focus groups of ten patients each, two each in Denver and in Orange County, California and up to twelve phone interviews conducted with homebound patients.
The focus groups and interviews are being conducted to seek “feedback from CFS patients about their symptoms and the effects that the illness has on functioning.”
The resultant information will be used “to revise educational materials, provide more accurate diagnostic guidance to clinicians and update the CDC website.”
To be eligible, the selection criteria for patients in the focus groups
and the interviews
must have been “told by a doctor or health care professional that you had CFS or ME
” at some point and must still have CFS or ME.
The project approval document also says questions will be asked “about symptoms from the currently used 1994 Case Definition and additional symptoms recommended by the IOM report.”
These documents continue to refer to CFS (aka ME) and suggest that Fukuda cfs is the same as the neuroimmune disease discussed in the IOM report.
Because these are not one and the same, it is imperative that ME patients and CFS patients be separated out in educational efforts.
It is of great concern that this initiative is using CFS as well as ME patients.
The questions for CDC are as follows:
- Do these documents reflect the current plan?
- Given that the documents state that patients can have either CFS or ME, how will you ensure that these patients actually have the neuroimmune disease discussed in the IOM report and described by the CCC?
- Will your resultant medical education require post-exertional malaise as defined by both the CCC and the IOM?
- How will CDC engage disease experts to identify the patients and validate the resultant content?"
(as of 17 Sept 2015 CDC has not answered any of these questions)