Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics
<b>Background:</b> One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CF...
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MDPI AG
2024-02-01
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| Series: | Journal of Clinical Medicine |
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| author | Elizabeth R. Unger Jin-Mann S. Lin Yang Chen Monica E. Cornelius Britany Helton Anindita N. Issa Jeanne Bertolli Nancy G. Klimas Elizabeth G. Balbin Lucinda Bateman Charles W. Lapp Wendy Springs Richard N. Podell Trisha Fitzpatrick Daniel L. Peterson C. Gunnar Gottschalk Benjamin H. Natelson Michelle Blate Andreas M. Kogelnik Catrina C. Phan on behalf of the MCAM Study Group |
| author_facet | Elizabeth R. Unger Jin-Mann S. Lin Yang Chen Monica E. Cornelius Britany Helton Anindita N. Issa Jeanne Bertolli Nancy G. Klimas Elizabeth G. Balbin Lucinda Bateman Charles W. Lapp Wendy Springs Richard N. Podell Trisha Fitzpatrick Daniel L. Peterson C. Gunnar Gottschalk Benjamin H. Natelson Michelle Blate Andreas M. Kogelnik Catrina C. Phan on behalf of the MCAM Study Group |
| author_sort | Elizabeth R. Unger |
| collection | DOAJ |
| description | <b>Background:</b> One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity. <b>Methods:</b> We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic. <b>Results:</b> We found few statistically significant and no clinically significant differences between clinics in their patients’ standardized measures of ME/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures. <b>Conclusions:</b> Illness heterogeneity may be an inherent feature of ME/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case–control study designs without subgrouping or stratification of ME/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms. |
| first_indexed | 2024-04-25T00:26:22Z |
| format | Article |
| id | doaj.art-261044cc7814432aa8081e748677c868 |
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| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-04-25T00:26:22Z |
| publishDate | 2024-02-01 |
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| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-261044cc7814432aa8081e748677c8682024-03-12T16:48:12ZengMDPI AGJournal of Clinical Medicine2077-03832024-02-01135136910.3390/jcm13051369Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty ClinicsElizabeth R. Unger0Jin-Mann S. Lin1Yang Chen2Monica E. Cornelius3Britany Helton4Anindita N. Issa5Jeanne Bertolli6Nancy G. Klimas7Elizabeth G. Balbin8Lucinda Bateman9Charles W. Lapp10Wendy Springs11Richard N. Podell12Trisha Fitzpatrick13Daniel L. Peterson14C. Gunnar Gottschalk15Benjamin H. Natelson16Michelle Blate17Andreas M. Kogelnik18Catrina C. Phan19on behalf of the MCAM Study GroupDivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USADivision of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention (CDC), Atlanta, GA 30329-4027, USAInstitute for Neuro Immune Medicine, Nova Southeastern University, Fort Lauderdale, FL 33314, USAInstitute for Neuro Immune Medicine, Nova Southeastern University, Fort Lauderdale, FL 33314, USABateman Horne Center, Salt Lake City, UT 84102, USAHunter-Hopkins Center, Charlotte, NC 28226, USAHunter-Hopkins Center, Charlotte, NC 28226, USARichard N. Podell Medical, Summit, NJ 07901, USARichard N. Podell Medical, Summit, NJ 07901, USASierra Internal Medicine, Incline Village, NV 89451, USASierra Internal Medicine, Incline Village, NV 89451, USADepartment of Neurology, Mount Sinai Beth Israel, New York, NY 10029, USADepartment of Neurology, Mount Sinai Beth Israel, New York, NY 10029, USAOpen Medicine Clinic, Mountain View, CA 94040, USAOpen Medicine Clinic, Mountain View, CA 94040, USA<b>Background:</b> One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity. <b>Methods:</b> We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic. <b>Results:</b> We found few statistically significant and no clinically significant differences between clinics in their patients’ standardized measures of ME/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures. <b>Conclusions:</b> Illness heterogeneity may be an inherent feature of ME/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case–control study designs without subgrouping or stratification of ME/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms.https://www.mdpi.com/2077-0383/13/5/1369multi-site studysite differencepatient characteristicsheterogeneitycommon data elements (CDEs)myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) |
| spellingShingle | Elizabeth R. Unger Jin-Mann S. Lin Yang Chen Monica E. Cornelius Britany Helton Anindita N. Issa Jeanne Bertolli Nancy G. Klimas Elizabeth G. Balbin Lucinda Bateman Charles W. Lapp Wendy Springs Richard N. Podell Trisha Fitzpatrick Daniel L. Peterson C. Gunnar Gottschalk Benjamin H. Natelson Michelle Blate Andreas M. Kogelnik Catrina C. Phan on behalf of the MCAM Study Group Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics Journal of Clinical Medicine multi-site study site difference patient characteristics heterogeneity common data elements (CDEs) myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) |
| title | Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics |
| title_full | Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics |
| title_fullStr | Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics |
| title_full_unstemmed | Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics |
| title_short | Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics |
| title_sort | heterogeneity in measures of illness among patients with myalgic encephalomyelitis chronic fatigue syndrome is not explained by clinical practice a study in seven u s specialty clinics |
| topic | multi-site study site difference patient characteristics heterogeneity common data elements (CDEs) myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) |
| url | https://www.mdpi.com/2077-0383/13/5/1369 |
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