Last month, we presented information about the diagnostic criteria, exploring their similarities and differences. Click here to read that article.
This week, we’re reporting on a survey we sent to ME-literate researchers and clinicians. We contacted clinicians who treat or have treated people with myalgic encephalomyelitis (ME) as their main patient population, and researchers who study ME as one of their main areas of focus. We contacted 65 researchers and clinicians, receiving 22 completed survey questionnaires and four sets of stand-alone comments via email. No biopsychosocial (BPS) theorists or clinicians, who view the disease as treatable via changes in behavior, were contacted.
Bottom line response:
The Canadian Consensus Criteria was judged best definition for research and clinical use, for both specialist and mainstream medical practitioners. Though some questions required a definitive answer, while in others, responders were able to choose multiple sets of criteria, the most popular responses were always, in order:
1. Canadian Consensus Criteria (CCC)
2. National Academies of Medicine / Institute of Medicine criteria (NAM/IOM)
3. International Consensus Criteria (ICC)
There were significant gaps between the popularity of these responses. For example, 82% of responders agreed that CCC is appropriate for clinical use, including 100% of clinicians surveyed. 64% considered NAM/IOM appropriate for clinical use, and 41% agreed ICC is appropriate for clinical use.
Our survey also showed that there is low confidence in the adequacy of current criteria overall. When asked whether current definitions are adequate for research and clinical use, the most common response was that none of the definitions are adequate but there is not enough evidence to produce a new set of criteria.
About the Survey
The survey has some limitations. Contacting researchers and clinicians via email, text message, and in person provides us with a convenience sample. Given #MEAction’s outreach, we have contact information for a significant percentage of active researchers and clinicians, but responses will still be determined by who we’ve communicated with before, along with how important they considered the central question(s), and how comfortable they felt sharing the honest opinion we solicited. Researchers often change email addresses as they change institutions, and it is possible that some of the email addresses were no longer in use.
Six individuals who described their professional role as ‘clinical’ completed the survey. Some of these individuals listed researcher as well.
16 individuals listed their role as solely research-oriented. However, of these, 25% also had a medical degree (MD), meaning just under half of responders were trained as clinicians.
Note that inclusion of an answer choice on the survey is not equivalent to agreement with that answer choice. Rather, we included a spectrum of opinions we have heard expressed in conversations with researchers and clinicians in the past.
Finally, note that for ease of understanding, we’ve arranged our data such that popular answers appear first when the chart is read left to right. These were not necessarily the first questions asked. Specifically, when inquiring about diagnostic criteria, we listed them in chronological order.
#MEAction’s goal was to solicit the opinions of researchers and clinicians regarding the diagnostic criteria used both clinically and in research. You can access a pdf of the survey questions here.
I hope that you will join us when we discuss the outcomes of these surveys and how they apply to our advocacy!