Lenny Jason had little good to say about the new name in a recent article “How Disease Names Can Stigmatize“. Prominently highlighting a slew of negative comments (” It is pathetic, degrading and demeaning”, “Absolutely outrageous and intolerable!”) at the head of the article, Jason stated that “patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.”
That wasn’t quite the impression we got at Health Rising. The name was certainly controversial but a significant portion of readers did not object. In a poll attracting about 750 people, a solid majority (43-29%) felt it was preferable to “ME/CFS”. Fifty percent felt the name would at least moderately help their doctors to better understand their illness.
Still, little evidence that name was well- liked could be found with 75% stating it had either a moderate or high “cringe factor” and a significant subset of patients were absolutely opposed to it.
Jason acknowledged that myalgic encephalomyelitis (ME) is not an accurate description of ME/CFS at this time, but argued that it was well known and loved in the patient community. He noted that other diseases such as malaria ( “bad air”) have names that are not scientifically accurate “.
The term malaria was adopted in the Middle Ages, however, long before the birth of modern medicine. A good question would be whether any names that are popular but known to medically inaccurate have been adopted for diseases in the modern era. Another question concerns whether the IOM panel could have submitted “ME” with any hopes of getting it past the reviewers at the DHHS or their own reviewers. (They felt they could not have.) Ramsay’s Disease is another possible favorite that could run into trouble at the DHHS given the World Health Organization’s admonition against naming diseases after individuals.
Jason argued, however, that the process never should have gotten to the point where something as consequential as a name change was left up to a committee and its reviewers. He believes that buy-in from the patient community in this instance, is important, and, indeed, patient participation is emphasized more and more in many aspects of medicine. He suggested that “a more transparent, interactive, and open process” would have been helpful and proposed a process for that. Charles Shepherd suggested that a more inclusive process occur as well.
“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.” Jason
The Last Name Change Working Group
In 2000, the last Name Change Working Group which included Lenny Jason, Dr. Klimas, Dr. Levin, Dr. Lapp and patient advocates was initiated. During the three years the group was in existence, it did research, held a Forum and distributed questionnaires to patients and researchers. At then end the group found that the patient and research communities liked different names; neuroendocrine immune disease (NEID) was preferred by the patient community and myalgic encephalomyelitis ME was preferred by the research community. Almost half of the research community, did not endorse a name change.
The Working Group proposed that CFS be called neuroendocrineimmune dysfunction (NDS). Their efforts came to a screeching halt, however, in 2003 when CFSAC, citing a lack of scientific clarity around ME/CFS, opposition at the CDC to a name change, and the damaging effects on research voted almost unanimously to reject a name change.
The effort highlighted the different criteria the patient and research community can have for a name. The research community likely above all wants something that’s scientifically accurate while the patient community probably wants something that denotes the seriousness of the condition.
Name Change Poll Take Two
It’s been a week since the name came out. Now in a new poll we provide five choices and ask , if you had to pick a name right now, what name you would pick.
(We didn’t include the catchiest name proposed thus far: Post Exertional Neuro Immune Syndrome aka PENIS :))
Make your choice by grabbing the icon to the left of each name and moving it and down until the names are arranged in the order of your preference. Then click submit!
Hot Button Topic Overtakes More Important Issues?
“It’s your move, HHS. You commissioned this report for $1 million. How will you put its recommendations into practice?” Jennie Spotila
Names have consequences but there’s no evidence that they are determinative. Fibromyalgia has had a “good” name for decades and is still widely dismissed by rheumatologists and other doctors. Despite a better name and no less than three FDA approved drugs fibromyalgia still gets considerably less funding per patient from the NIH than ME/CFS. Interstitial cystitis has a good name and gets similarly poor funding. Changing a name may help but there’s no evidence that it will change the “gestalt” at the NIH that is holding us back from our major need: getting more funding.
The P2P and IOM reports – both federally funded – that assert ME/CFS should receive far more resources have a much greater chance at changing the “listening” this disease gets at the NIH and producing change. It’s unfortunate, in my opinion, that the proposed name change is overshadowing the most important outcomes of these reports: the opportunity to more effectively advocate for more resources.
The IOM Committee considers SEID to be a temporary name that will be eclipsed, sooner hopefully rather than later, by a more physiologically appropriate name. In order for that to happen, though, ME/CFS needs more funding. In order for appropriate treatments to be found and developed ME/CFS needs more funding.
Funding ultimately takes care of everything – changing the name does not. Mounting an effective advocacy movement to obtain more funding and produce Centers of Excellence where patients can have access to the best treatments available is the most critical factor right now. Jennie Spotila’s recent blog “Your Move, HHS” highlighted that issue.
- Coming up next – building an effective advocacy movement to produce change.