Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
No. It was their job to develop a strategy, not implement it.Shouldn't it be the IOM's obligation to disseminate the information?
As dissemination activities are planned, however, it is also important to recognize the various external environmental factors that may present challenges to dissemination efforts. One of the more concerning of these external factors is the lack of awareness and continuing skepticism among many health care providers of ME/CFS as a legitimate physical illness.
A study published in 2010 by CDC found that 96 percent of health care providers were aware of ME/CFS and were able to recall accurately some symptoms associated with the 1994 Fukuda definition (Brimmer et al., 2010). Yet the same study also found that a significant portion of providers had doubts and misconceptions about the illness. Some providers still were expressing the belief that “people with [ME/CFS] are just depressed” and 30 to 43 percent link the illness to high socioeconomic status or pre-illness “competitive/compulsive” personality traits. These findings led the authors of the study to recommend that future education efforts for providers address diagnosis and be delivered through venues used by providers as their primary sources of reliable and accurate information. As part of the CDC study, physicians reported that professional journals, the Internet, and continuing education programs were their top three sources for information on ME/CFS. Similarly, a 2011 study found that 85 percent of health care providers still believed the illness was wholly or partially a psychiatric rather than a medical one (Unger, 2011). Numerous studies also have documented skepticism among clinicians about ME/CFS being a distinct clinical entity (Bayliss et al., 2014).
Other attitudinal barriers include physicians’ low self-efficacy and lack of positive outcome expectancy with respect to ME/CFS. A recent CDC-sponsored Medscape continuing medical education program found that a high percentage of the more than 2,000 respondents were “not at all confident” or only “somewhat confident” about making a diagnosis of ME/CFS (Harmon et al., 2014). In a separate study, almost 70 percent of clinicians who had previously diagnosed patients with ME/CFS still believed the illness to be more difficult to diagnose than other illnesses (Brimmer et al., 2010). Finally, some physicians, despite being somewhat knowledgeable about and believing in the legitimacy of the condition, may not share those thoughts with their patients because of the mistaken belief that giving them a diagnosis of ME/CFS will “inhibit a patient’s motivation to get better” as it prevents them from engaging fully with the existential conditions of their life, which is what they cannot cope with (Brimmer et al., 2010, p. 10). Consequently, successful dissemination of the committee’s new clinical diagnostic criteria will entail not only educating clinicians about the content of the criteria but also addressing the attitudes and beliefs that could hinder the criteria’s acceptance.
CDC also appears to be conducting 4 focus groups and 12 patient interviews to get the patient perspective. This is using a group called the Aspen group.
@Denise - seems promising! I'd like to see the videos that they created, but the first article seems to be in the right spirit.