name change – American ME and CFS Society

Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences

Abstract:

There have been numerous iterations of naming convention specified for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). As health care turns to “big data” analytics to gain insights, the Google Trends database was mined to ascertain worldwide trends of public interest in several ME- and CFS-related search categories between 2004 and 2019.

Time series analysis revealed that though “Chronic Fatigue Syndrome” remains the predominant search category in the ME and CFS field, the interest index declined at a rate of 2.77 per month during the 15-year study period. In the same time period, the interest index in “ME/CFS Hybrid” terms increased at a rate of 3.20 per month. Potential causal mechanisms for these trends and implications for patient sentiment analysis are discussed.

Source: Bhatia, S., & Jason, L. A. (2023). Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences. Journal of Disability Policy Studies, 0(0). https://doi.org/10.1177/10442073231154027

Systemic exercise intolerance disease: What’s in a name?

Abstract:

The syndrome characterized primarily by chronic, disabling fatigue without adequate explanation has been of interest to patients, clinicians and researchers. Chronic fatigue syndrome (CFS) is a widely used term for this condition in scientific and lay literature but is not acceptable to many patients because of perceived stigma due to implied psychological causation.

CFS has recently been replaced by systemic exercise intolerance disease (SEID) by the Institute of medicine with the objectives of providing and disseminating evidence-based criteria and to provide a more acceptable name for this condition. Simultaneously, changes have taken place in DSM-5 with regards to this condition. Mental health professionals need to be aware of this change in the interests of patient care.

The need to replace CFS with SEID and the nosological changes also indicate an inability to do away with the Descartian mind-body dualism despite efforts to the contrary and a need to debate the failure of the bio-psycho-social model to ‘mainstream’ and destigmatize psychiatry.

Source: Sen MS, Sahoo S, Aggarwal S, Singh SM. Systemic exercise intolerance disease: What’s in a name?Asian J Psychiatr. 2016 Aug;22:157-8. doi: 10.1016/j.ajp.2016.06.003. Epub 2016 Jun 23. https://www.ncbi.nlm.nih.gov/pubmed/27520920

Comment

Lily Chu 2016 Sep 14 8:50 p.m.

As a member of the Institute of Medicine Committee, I talked to multiple patients, caregivers, clinicians, and researchers. The problem they have with the name “CFS” goes beyond psychological stigma. For one, fatigue is only one symptom of the disease but not even the most disabling one for patients. Post-exertional malaise and cognitive issues are. Secondly, most patients and families are concerned about psychological implications not because of stigmatization but simply because CFS is NOT a psychological or psychiatric condition. Some patients experience co-morbid depression, acknowledge its presence, and receive treatment for it. In support groups, patients discuss depression and anxiety without fear of stigma. The problem comes when clinicians or researchers conflate patients’ depression with their CFS and conclude that they can treat the latter condition with cognitive behavioral therapy or with SSRIs. An analogy would be if tomorrow, patients experiencing myocardial infarcts and major depression were told aspirin, B-blockers, cholesterol medication, etc. would no longer be the treatments for myocardial infarcts but instead SSRIs would be. Could you imagine how patients would feel in that circumstance? That is why they are concerned.

Reflections on the Institute of Medicine’s systemic exertion intolerance disease

Abstract:

The Institute of Medicine (IOM) in the United States has recently proposed that the term systemic exertion intolerance disease (SEID) replace chronic fatigue syndrome. In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre illness activities, unrefreshing sleep, postexertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls. A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses. Findings suggest that the new criteria select more patients who have less impairment and fewer symptoms than several other criteria. The implications of these findings are discussed in the current review.

Source: Jason LA, Sunnquist M, Brown A, McManimen S, Furst J. Reflections on the Institute of Medicine’s systemic exertion intolerance disease. Pol Arch Med Wewn. 2015;125(7-8):576-81. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4826027/ (Full article)

Exhaustion–not fatigue

Erlend Hem & Jon Håvard Loge refutes the language gap in this Journal no. 18/2004 our argument that “chronic exhaustion syndrome” should be the Norwegian term for “chronic fatigue syndrome” ( 1 , 2 ). In his speech, they write that “many patients with somatic diseases and fatigue would probably feel somewhat alien to mention symptom as fatigue, because fatigue usually linked to a prior activity” ( 2 ).

You can read the rest of this comment here: http://tidsskriftet.no/article/1095666

Source: Wyller VB, Wyller TB. Exhaustion–not fatigue. Tidsskr Nor Laegeforen. 2004 Nov 4;124(21):2802; author reply 2802. [Article in Norwegian] http://tidsskriftet.no/article/1095666 (Full article)

Assessing attitudes toward new names for chronic fatigue syndrome

Abstract:

A questionnaire was distributed at the American Association of Chronic Fatigue Syndrome’s biannual convention in Washington in January 2001 as well as through various Internet Web sites and listserves during early February and March of 2001. The sample consisted of 432 respondents. Most respondents (86%) indicated they wanted a name change, although more patients than scientists were in favor of this change. It was also apparent that the patients and physicians were clearly split between adopting a name such as myalgic encephalopathy versus one such as neuro-endocrine immune disorder. Also, among those respondents who selected either of these two choices for a new name, less than 30% of them supported the other name. Although the majority of respondents feel the name should be changed at this time, this survey suggests there are different stakeholders involved in the name-change process, each with strong and sometimes disparate feelings about changing the name.

Source: Jason LA, Eisele H, Taylor RR. Assessing attitudes toward new names for chronic fatigue syndrome. Eval Health Prof. 2001 Dec;24(4):424-35. http://www.ncbi.nlm.nih.gov/pubmed/11817200