• Find new funding resources, such as through partnerships across institutions to advance the research and develop new scientists.
• Conduct clinical trials, and create a website for patient and clinician educational materials and information about clinical trials.
• Improve treatment.
“Patients should be active participants in care and decision-making,” the panel wrote, noting that the modest benefit from cognitive behavioral therapy should be studied as an adjunct to other methods, and that future treatment studies should evaluate multifaceted therapies focusing on biomedical and supportive care.
During the press briefing, Dr. Green added that, to develop primary prevention strategies and effective drug treatment, there needs to be a clear understanding of the condition’s cause and the population it affects.
“We hope the information provided in the panel report clearly sheds light on these issues and helps to facilitate positive results to improve the quality of the research and ultimately leads to better outcomes for the patients impacted,” she said.
The panel recommended that the NIH Office of Disease Prevention convene another expert panel in 5 years to monitor progress.
In an editorial, Dr. Anthony L. Komaroff of Brigham and Women’s Hospital, Boston, said the panel report, as well as the IOM report and the AHRQ reviews, “demonstrate how much we have learned about ME/CFS and how much we still do not know. We do not understand its pathogenesis, and we do not have a diagnostic test or a cure. However, these recent reports, summarizing information from more than 9000 articles, should put the question of whether ME/CFS is a ’real’ illness to rest.”
“When skeptical physicians, many of whom are unaware of this literature, tell patients with ME/CFS that ‘there is nothing wrong,’ they not only commit a diagnostic error: They also compound the patients’ suffering,” he wrote.
The systematic reviews were sponsored by the AHRQ. The workshop panel members reported having no disclosures. Dr. Komaroff also reported having no disclosures.