Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research, an organization that began in 2001, when Dr. Bateman realized that there was a great need to provide support to those in our community who deal daily with ME/CFS and/or Fibromyalgia.
Dr. Bateman served on the Institute of Medicine committee that produced the recent report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. In this guest blog post she weighs in on the conversation surrounding the IOM report on ME/CFS, the new diagnostic criteria and the proposed name, Systemic Exertion Intolerance Disease (SEID).
This post originally appeared on the OFFER Utah website and is reprinted here with her permission.
The IOM accepted the controversial contract issued by DHHS (funded by NIH, CDC, FDA, and AHRQ) and worked on the project for one year in 2014. One “Charge to the Committee” was to “develop evidence-based diagnostic criteria for use by clinicians” which involved reviewing the higher quality, peer reviewed, published scientific papers in order to determine which illness criteria are best supported by the evidence. An additional charge was to “recommend whether new terminology for ME/CFS should be adopted.” The committee focused intensely on the complex project, and avoided the temptation to go beyond or outside the statement of task. The contract is now complete and the report has been delivered to the sponsor.
The complete report can be accessed online at http://iom.edu/Reports/2015/ME-CFS.aspx
The newly released ME/CFS Clinicians Guide can be accessed online HERE
Now that I am intimately familiar with the IOM process, I respect it and do not expect the IOM to change what they do just because the scientific, clinical and political conundrums around ME/CFS are particularly challenging. The IOM almost always tackles challenging tasks. The IOM is respected in part because of its adherence to a process with high standards. The IOM process is not a transparent, publicly interactive or open process; it is a confidential, internally interactive, collaborative and “consensus building methodology” that was an intellectual and interpersonal challenge for those entrusted with the task.
It was not within the statement of task, or “Committee Charge,” of this particular project to establish illness etiology/cause, assess risks of blood donation, determine best treatments, design or implement studies to validate or compare case definitions, or alter the content of the report based on how it might be received.
The clinical diagnostic criteria in the report are core symptoms drawn directly from the published ME/CFS literature—much of which came from Dr. L. Jason’s works and the CDC multi-site study — informed by self-reported symptoms from patients of ME/CFS specialists (Klimas, Peterson, Natelson, Levine, Lapp, Podell, Kogelnik, Komaroff and Bateman) and the SolveCFS Biobank™. These symptoms are important ongoing aspects of ME/CFS illness – substantially reduced functional capacity and fatigue, PEM, non-restorative sleep, neurocognitive impairment and/or orthostatic intolerance/autonomic dysfunction – that physicians have previously often missed, but that they should immediately identify and assess in order to make a diagnosis and provide care. The symptoms must be of moderate to severe intensity and consistently present over time, an important parameter supported by Dr. Jason’s research.
The report also lists other common symptoms and manifestations of this illness that are not considered “core” or specific to the illness, not as universally present in all cases of ME/CFS, are common in other chronic conditions, or are not supported strongly by the evidence. Nevertheless these “other symptoms” are commonly present—pain, infection onset, immune impairment and neuroendocrine manifestations – and when present in patients who meet the major criteria support the diagnosis. The report also says clearly that the evidence isn’t strong enough yet to delineate clear subgroups, at least in a report of this type and scope.
Regarding adopting new terminology, the committee decided the answer was yes. Then while still immersed in the science, the rich input from patients, and the combined experience of the group, the committee devised a name intended to send a clear message to clinicians about the profound impact of the illness. Multisystem. Activity limiting. Punishing. Then an aggressive plan of dissemination was recommended to DHHS to jump-start the process of bringing sick ME/CFS/SEID patients back into the medical and scientific mainstream.
The DHHS and the other co-sponsors have received the report and recommendations of the IOM. In distinct contrast to the IOM process, it is the responsibility of the U.S. government to engage in a transparent, publicly interactive and open process with its citizens.
The Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services), the International Association of ME/CFS (the scientific organization), and interested advocates may certainly give DHHS input about what name should be endorsed, hopefully taking the IOM recommendations into consideration.
To quote an interested bystander observing the conflicted public response to the IOM report, “Patients should leverage the report, not try to kill it.”
As for myself….I hope that US doctors start using the criteria right away and begin to identify this illness in their patients so they can provide compassionate and informed care. I hope that scientific progress (large, controlled, well designed and funded studies) and breakthrough treatment ideas immediately follow at a breathtaking pace. I hope we leave name change deliberations in the dust and focus on the people who are ill. I hope we identify subgroups, create more diagnostic tests, unravel elusive disease processes, and revise the criteria based on great scientific advances within the next 3-5 years. I hope this conversation will soon seem old and outdated.
– Dr. Bateman, February 2015
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In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust. This award gives SMCI the opportunity to further grow the SolveCFS BioBank™ and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan. L:earn more HERE.
In a recent 3-part blog series, Dr. Bateman offered some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients… Access that post series here: