Interesting analysis from Dr. Leonard Jason's team on the survey data collected by Solve ME/CFS to get input on the following questions In preparation for the May 2014 IOM meeting.
- In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
- What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?
By Leonard A. Jason, Laura Nicholson, Diana Ohanian, Kelly O’Connor, & Abigail Brown, DePaul University
A survey that was distributed by the Solve ME/CFS Initiative this past April was filled out by 143 patients. The survey was intended to provide feedback to the IOM Committee on patient perspectives on what healthcare providers should be educated about and terminology to describe the illness. Our research group at DePaul University has now analyzed the public data from this survey, and we are in the process of writing up this report for publication. However, given the timeliness of these findings, we thought it was important to provide the patient and scientific community the main results of this survey.
The first of two open ended questions was: “In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS? This first question brought a wealth of responses and suggestions on what healthcare providers should be educated about when it comes to diagnosis. Notably, a large portion (37%) of patients mentioned they wanted healthcare providers to know that it is a real and serious illness, 35% emphasized wanting healthcare providers to recognize the severity and/or complexity of their symptoms, 26% highlighted the need for new and better treatment/diagnostic testing options, 25% stated healthcare providers should not blame their symptoms on psychiatric issues (i.e. depression), and 25% emphasized that there needs to be increased knowledge/awareness of post-exertional malaise (PEM) as it is considered a cardinal feature of the illness. These top five concerns indicate that substantial improvements need to be made in the realm of patient care.
The second question asked respondents: “What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?” Our sample suggested 50 different names for this illness. The overwhelming majority of respondents chose the name Myalgic Encephalomyelitis . Specifically, 56% of respondents’ first preference for the name of the illness was Myalgic Encephalomyelitis , with the next most endorsed name choice of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome receiving votes from only 13% of respondents. Over 95% of participants who gave an opinion on the name Chronic Fatigue Syndrome either disliked or strongly disliked that name. We hope that the IOM panel members are able to consider the views of this sample from the patient community.
The first of two open ended questions was: “In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS? This first question brought a wealth of responses and suggestions on what healthcare providers should be educated about when it comes to diagnosis. Notably, a large portion (37%) of patients mentioned they wanted healthcare providers to know that it is a real and serious illness, 35% emphasized wanting healthcare providers to recognize the severity and/or complexity of their symptoms, 26% highlighted the need for new and better treatment/diagnostic testing options, 25% stated healthcare providers should not blame their symptoms on psychiatric issues (i.e. depression), and 25% emphasized that there needs to be increased knowledge/awareness of post-exertional malaise (PEM) as it is considered a cardinal feature of the illness. These top five concerns indicate that substantial improvements need to be made in the realm of patient care.
The second question asked respondents: “What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?” Our sample suggested 50 different names for this illness. The overwhelming majority of respondents chose the name Myalgic Encephalomyelitis . Specifically, 56% of respondents’ first preference for the name of the illness was Myalgic Encephalomyelitis , with the next most endorsed name choice of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome receiving votes from only 13% of respondents. Over 95% of participants who gave an opinion on the name Chronic Fatigue Syndrome either disliked or strongly disliked that name. We hope that the IOM panel members are able to consider the views of this sample from the patient community.