The Institute of Medicine (IOM) study, commissioned by the Dept of Health and Human Services to develop and distribute diagnostic criteria for ME/CFS and possibly suggest the need for a new name, will come to fruition in spring 2015. In April 2014, the Solve ME/CFS Initiative created and circulated a survey to patients in advance of the May 5, IOM Committee meeting, in order to facilitate make it easier for patients to offer their thoughts and insights on the committees specific questions:
- 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?
We compiled all of the answers into a report and submitted them in full, unedited, prior to the meeting, urging the committee to take the time to read all the responses, noting that, “For many, just the effort required to provide their response comes at a great cost in terms of energy spend. They ‘spent’ their energy reserve on this because of the magnitude of its importance to them personally and to the overall ME/CFS community.”
Being alerted to the data from this survey by a patient advocate, Leonard A. Jason asked for access to the full data set in order to more thoroughly analyze the it and present the findings for publication. We gladly gave Jason access to the full data set and the resultant paper is now being written up for publication. Given the timeliness of the findings, with the P2P Worshop just around the corner and the IOM committee results due out in the coming months, we wanted to share the summary findings that will be presented in the paper upon completion.
ME/CFS Patient Perspectives on Name Change & Priorities for Healthcare Provider Education
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.
We will let you know when the full paper is accepted for publication.