Russell Fleming and Tony Britton have compiled this list of reactions by medical experts to the ‘Name Change Committee’ recommendation from news reports, websites and blogs.
Peter Rowe, who heads the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore, Maryland, and was one of 15 committee members, had high praise for the process and the product.
“This is a phenomenal report,” Rowe said, noting that it had unanimous support. “It has the best summary of the evidence that I’ve ever read.” The U.S. Department of Health and Human Services and the Social Security Administration sponsored the IOM study and report.
Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. “Boy, did we struggle with that,” he said. “It’s hard to come up with a good name, and I don’t think this is a perfect name.”
But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.”
Davis hopes the report will convince all clinicians that they can diagnose the disease and that it is real. “I hope it will get rid of those who may not believe it,” Davis said. “They’ll have to keep it to themselves. It’s incompetence and it’s malpractice.”
The report recommends that a multidisciplinary committee review the diagnostic criteria for SEID within 5 years. Rowe says they may want to review the name, too. “We don’t believe it’s going to be the name forever, but it’s a step forward,” he says.”
Leonard Jason, a psychologist at DePaul University in Chicago, expects that patient advocacy groups will find fault with the new name, feeling that they were not adequately consulted. “As a community psychiatrist who values citizen participation in critical decisions, I think this was a strategic mistake,” he says.
Still, chronic-fatigue expert Derek Enlander, a physician in New York City, worries that the new criteria are too broad, and will result in too many patients being diagnosed. The new name, he says, is bound to confuse patients, physicians, and researchers, especially those who are not familiar with the condition.
Enlander says that the HHS, which spent US$1 million on the report, is likely to adopt the new definition. Yet the debate over the diagnostic criteria is sure to continue. “This is round one,” Jason says.”
Dr Jarred Younger: “I believe this report represents a very promising move forward in terms of “legitimizing” the disorder. We are now seeing a true push to recognize SEID as an important medical entity, and to train medical professionals to diagnose the disorder. It may take some time to see the true benefits of this move, especially because there are no approved treatments for the diagnosis. However, in the short term, we will likely see a drastic increase in the number of diagnoses made (it is currently severely underdiagnosed), and more exposure for the condition. In the medium term, the move should result in more research funding being devoted to the area.
The IOM team put an amazing number of hours into this report, which should have a long-lasting impact on the field. It is the result of significant effort by individuals who are truly invested in improving the lives of people with this disorder. While there is still much to be done, I hope everyone is heartened somewhat by the knowledge that this chronic condition is finally starting to get the attention it deserves.”
““The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives,” said Dr. Jose Montoya, an infectious disease specialist who helped establish a chronic fatigue syndrome team at Stanford University a decade ago. “For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words.” The report “has the potential to change the narrative of this disease,” Montoya said.
The new report could prove a watershed moment following years of struggle for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), who often have had to fight to convince doctors that something was truly wrong with them, said Suzanne Vernon, scientific director of the Solve ME/CFS Initiative.
“I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS,” Vernon said.”
““This is a defining moment for the disease,” said Carol Head of the Solve ME/CFS Initiative, the largest advocacy organization. Beyond improving diagnosis, the government-funded report should spur more research to understand and treat the disease, she said.
It’s too soon to know if the new name will catch on, but including the word “disease” instead of “syndrome” is an improvement, Head added.
“Having called this serious disease by an inappropriate and frankly insulting name is one of the factors that kept doctors, friends, family members, even employers from affording it the seriousness it deserves,” she said.
There are ways to treat some of the symptoms, if doctors make a diagnosis, said committee member Dr Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City.
“We are hoping that these diagnostic criteria provide a very clear path,” she said. “It’s a fresh start.”
The recommendations mark “a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness,” said Dr Nancy C. Lee of the HHS Office on Women’s Health. She said the government would review the recommendations.”
According to Dr Rowe, “It was a unanimous committee report…. It was interesting for us who are clinicians in the field to see how obvious the direction of the evidence was for those who are scientists, but not specialists in this area.”
Dr Clayton, who has participated in previous IOM committees but did not have expertise in ME/CFS before joining this panel, said the evidence was particularly strong in three areas: The characteristic decrements seen after 2-day cardiopulmonary testing, clear and reproducible findings of orthostatic intolerance, and neuropsychiatric test data that show evidence of slowed processing. “This isn’t just things that patients are concerned about. These are reproducible things you can find on testing.”
She added, “The level of response is much more than would be seen with deconditioning,” with reference to the belief voiced by some clinicians that physical abnormalities in these patients are merely a result of their lack of activity.
Indeed, Dr Rowe noted, “That argument is untenable with people who have been physically active, some of them athletes, [before becoming ill]. The deconditioning argument is flawed in that respect.”
The report does not advise that clinicians routinely perform expensive testing that was done in some of the studies. Instead, the diagnosis should be primarily based on appropriate history, physical examination, and targeted symptom-based workup.
Dr Clayton said, “We emphatically do not want clinicians to do all the objective tests we identify. They’re expensive, onerous, and not uniformly available. Often you can get most of what you need from the history and physical.”
Although the document doesn’t address treatment, Dr Rowe said physicians can and should provide symptom-based care. “We’ve got good treatment algorithms for things like headaches, sleep disturbance, and certain [other] kinds of pain. No one treatment is appropriate for every person, but there’s much out there that’s helpful and available to [clinicians].” And, he stressed, even though the diagnostic criteria call for 6 months of fatigue, treatment of symptoms should begin as soon as they are identified.”
Simon Wessely at King’s College London welcomes the criteria, but is less convinced by the name-change. “I’m concerned it may add to, not reduce, confusion around this condition,” he says.”
Systemic exertion intolerance disease might not roll off the tongue, but the panel chose it very purposefully, says Dr. Lucinda Bateman, a panel member who runs a fatigue specialty clinic in Salt Lake City.
“For years, nobody has been able to come up with an alternate name. We struggled, but we tried to pack each word with meaning,” she said.
Rather than use a name that presumes a cause, the IOM committee decided to name the disease by focusing on post-exertional malaise, the core symptom.
“Systemic” indicates that the reaction to exertion involves the entire body, while “intolerance” implies impairment. “Glucose intolerance,” for example, is a medical term used in relation to diabetes.
And, Bateman told Shots, the panel chose “disease” rather than “disorder” because “it’s a stronger word.”
Beyond encouraging physicians to take the condition seriously, diagnose patients and treat their symptoms, the panel also intends for the document to spur more research funding. As more information becomes available, both the diagnostic criteria and name are expected to evolve. The goal is to identify markers in the patient’s blood or body tissues that can be used both to diagnose the illness and as targets for treatment. Indeed, the report calls for a reevaluation of both the definition and the name in “no more than five years.”
“Change is not easy in any system, especially complex systems,” Bateman says. “But I think we have about as good a foundation as we possibly could have to jump-start this process.”
And the IOM’s choice of a new name — Systemic Exertion Intolerance Disease, or SEID — may not be much sexier than “chronic fatigue syndrome.” But at least it reflects a core symptom — that exertion can wipe patients out, authorities say.
“These people truly cannot function. They’re not just tired. We are talking profound exhaustion,” said Dr Nazila Biria, doctor of Internal Medicine at Englewood Hospital and Medical Center and Park Medical Group. “Some people think it’s just malingering, or being tired or lazy. But we’re dealing with real symptoms — total exhaustion after minor physical or even mental exertion.”
“It’s a diagnosis of exclusion. We usually order a bunch of lab tests to make sure we are not dealing with something else,” Biria said. There can be many other reasons a person feels exhausted, she noted. The most common ones are chronic Lyme Disease, anemia, diabetes and clinical depression.”
“This new criteria is very reassuring, because it shows patients they really have a disease. Generally patients are more relieved to hear that they have an actual physical disease, as opposed to something mental. Nobody wants to feel as if they are just having a difficult time dealing with life. But this shows it is a truly systemic disease,” Biria said.
“It’s too early to know if the alternative name proposed Tuesday will catch on. But just including the word “disease” instead of “syndrome” is important, said Carol Head, who leads the Solve ME/CFS Initiative, the largest advocacy organisation.
“Having called this serious disease by an inappropriate and, frankly, insulting name is one of the factors that kept doctors, friends, family members, even employers from affording it the seriousness it deserves,” she said.
“Cognitive behavioral therapy can be done by a primary care or family physician, or a psychotherapist, where they emphasize the role of thinking and how it affects the way we are feeling and acting — and exercise, in slow increments,” said Dr. Iris Erguder, family medicine physician affiliated with Holy Name Hospital in Teaneck.
…our scientific advisory board director, Ronald W. Davis, PhD, was one of the committee members who worked over a year and a half to ensure patient interests were represented in the end result. He brought the unique perspective of genetics research and personal experience because his son has a severe case of the disease.
“I don’t think people understand how horrible this disease is,” Dr. Davis is quoted as saying in a recent Medscape Medical News article. “They don’t look that sick. Even my son, who is incredibly debilitated, doesn’t look sick.” We hope this new name and criteria will make people see the devastation this disease can cause, even if the patients “don’t look sick.”
On 10 February 2015, the long-awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Times article, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.
The reaction from patients was mixed at best, and some of the critical comments include:
“This new name is an abomination!”
“Absolutely outrageous and intolerable!”
“I find it highly offensive and misleading.”
“It is pathetic, degrading and demeaning.”
“It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
“(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
“The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”
Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome.
Patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive. The IOM alleged that the term ME is not medically accurate, but the names of many other diseases have not required scientific accuracy (e.g., malaria means bad air). Regardless of how one feels about the term ME, many patients firmly support it.
Our research group has found that a more medically-sounding term like ME is more likely to influence medical interns to attribute a physiological cause to the illness. In response to a past blog post that I wrote on the name change topic, Justin Reilly provided an insightful historical comment: for 25 years patients have experienced “malfeasance and nonfeasance” (also well described in Hillary Johnson’s Osler’s Web). This is key to understanding the patients’ outrage and anger to the IOM.
So how could this have happened? The Institute of Medicine is one of our nation’s most prestigious organizations, and the IOM panel members included some of the premier researchers and clinicians in the myalgic encephalomyelitis and chronic fatigue syndrome arenas, many of whom are my friends and colleagues. Their review of the literature was overall comprehensive; their conclusions were well justified regarding the seriousness of the illness, identification of fundamental symptoms, and recommendations for the need for more funding. But these important contributions might be tarnished by patient reactions to the name change.
The IOM solicited opinions from many patients as well as scientists, and I was invited to address the IOM in the spring regarding case definition issues. However, their process in making critical decisions was secretive, and whereas for most IOM initiatives this is understandable in order to be fair and unbiased in deliberations, in this area — due to patients being historically excluded and disempowered — there was a need for a more transparent, interactive, and open process.
So what might be done at this time?
Support structural capacities to accomplish transformative change. Set up participatory mechanisms for ongoing data collection and interactive feedback, ones that are vetted by broad-based gatekeepers representing scientists, patients, and government groups. Either the Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services) or the International Association of ME/CFS (the scientific organization) may appoint a name change working group with international membership to engage in a process of polling patients and scientists, sharing the names and results with large constituencies, and getting buy in — with a process that is collaborative, open, interactive, and inclusive. Different names might very well apply to different groups of patients, and there is empirical evidence for this type of differentiation.
Key gatekeepers including the patients, scientists, clinicians, and government officials could work collaboratively and in a transparent way to build a consensus for change, and most critically, so that all parties are involved in the decision-making process.