{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T05:45:31Z","timestamp":1789796731050,"version":"4.0.1"},"reference-count":34,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2025,2,13]],"date-time":"2025-02-13T00:00:00Z","timestamp":1739404800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>People with Long COVID, myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases\u2014termed the \u201cnever-words\u201d\u2014can leave patients in significant emotional distress and negatively impact the clinician\u2013patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME\/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.<\/jats:p>","DOI":"10.3390\/ijerph22020275","type":"journal-article","created":{"date-parts":[[2025,2,13]],"date-time":"2025-02-13T08:01:19Z","timestamp":1739433679000},"page":"275","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders"],"prefix":"10.3390","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8131-8402","authenticated-orcid":false,"given":"Nancy J.","family":"Smyth","sequence":"first","affiliation":[{"name":"School of Social Work, University at Buffalo, Buffalo, NY 14421, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3982-2031","authenticated-orcid":false,"given":"Svetlana","family":"Blitshteyn","sequence":"additional","affiliation":[{"name":"Department of Neurology, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY 14203, USA"},{"name":"Dysautonomia Clinic, Williamsville, NY 14221, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,2,13]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","unstructured":"Komaroff, A.L., and Lipkin, W.I. (2023). ME\/CFS and Long COVID Share Similar Symptoms and Biological Abnormalities: Road Map to the Literature. Front. Med., 10.","DOI":"10.3389\/fmed.2023.1187163"},{"key":"ref_2","unstructured":"Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome: Redefining an Illness, National Academies Press."},{"key":"ref_3","doi-asserted-by":"crossref","unstructured":"Fineberg, H.V., Brown, L., Worku, T., and Goldowitz, I. (2024). A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences, The National Academies Press.","DOI":"10.17226\/27768"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"590","DOI":"10.1001\/amajethics.2021.590","article-title":"The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19","volume":"23","author":"Wall","year":"2021","journal-title":"AMA J. Ethics"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"100167","DOI":"10.1016\/j.ssmqr.2022.100167","article-title":"Long COVID and Medical Gaslighting: Dismissal, Delayed Diagnosis, and Deferred Treatment","volume":"2","author":"Au","year":"2022","journal-title":"SSM Qual. Res. Health"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"1553","DOI":"10.1016\/j.mayocp.2024.05.011","article-title":"Never-Words: What Not to Say to Patients With Serious Illness","volume":"99","author":"Grafton","year":"2024","journal-title":"Mayo Clin. Proc."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"106297","DOI":"10.1016\/j.jinf.2024.106297","article-title":"The Persistence of Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS) after SARS-CoV-2 Infection: A Systematic Review and Meta-Analysis","volume":"89","author":"Dehlia","year":"2024","journal-title":"J. Infect."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3390\/neurolint15010001","article-title":"ME\/CFS and Post-Exertional Malaise among Patients with Long COVID","volume":"15","author":"Jason","year":"2023","journal-title":"Neurol. Int."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1270","DOI":"10.1002\/pmrj.12894","article-title":"Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Autonomic Dysfunction in Patients with Post-Acute Sequelae of SARS-CoV-2 Infection (PASC)","volume":"14","author":"Blitshteyn","year":"2022","journal-title":"PMR"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"4272","DOI":"10.1093\/rheumatology\/keaa926","article-title":"Prevalence of Gastrointestinal, Cardiovascular, Autonomic and Allergic Manifestations in Hospitalized Patients with Ehlers-Danlos Syndrome: A Case-Control Study","volume":"60","author":"Brooks","year":"2021","journal-title":"Rheumatology"},{"key":"ref_11","doi-asserted-by":"crossref","unstructured":"Jason, L.A., McGarrigle, W.J., and Vermeulen, R.C.W. (2024). The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome. J. Pers. Med., 14.","DOI":"10.3390\/jpm14030238"},{"key":"ref_12","unstructured":"Peterson, J. (2025, February 10). CDC Provides Supplemental Award to CMSS to Improve Provider Education and Engagement to Care for People with Long COVID. Available online: https:\/\/cmss.org\/news\/cdc-provides-supplemental-award-to-cmss-to-improve-provider-education-and-engagement-to-care-for-people-with-long-covid\/."},{"key":"ref_13","unstructured":"Garvey, G. (2024, November 13). Do\u2019s and Don\u2019ts for Effective Patient-Physician Communication. Available online: https:\/\/www.ama-assn.org\/delivering-care\/physician-patient-relationship\/do-s-and-don-ts-effective-patient-physician."},{"key":"ref_14","first-page":"38","article-title":"Doctor-Patient Communication: A Review","volume":"10","author":"Ha","year":"2010","journal-title":"Ochsner J."},{"key":"ref_15","doi-asserted-by":"crossref","unstructured":"Kwame, A., and Petrucka, P.M. (2021). A Literature-Based Study of Patient-Centered Care and Communication in Nurse-Patient Interactions: Barriers, Facilitators, and the Way Forward. BMC Nurs., 20.","DOI":"10.1186\/s12912-021-00684-2"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"250","DOI":"10.1016\/j.jcrc.2014.11.016","article-title":"The Critical Care Communication Project: Improving Fellows\u2019 Communication Skills","volume":"30","author":"Arnold","year":"2015","journal-title":"J. Crit. Care"},{"key":"ref_17","doi-asserted-by":"crossref","unstructured":"Arnold, R.M., Back, A.L., Carey, E.C., Tulsky, J.A., Wood, G.J., and Yang, H.B. (2024). Navigating Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope, Cambridge University Press. [2nd ed.].","DOI":"10.1017\/9781108921107"},{"key":"ref_18","unstructured":"(2024, December 01). VitalTalk. Available online: https:\/\/www.vitaltalk.org\/."},{"key":"ref_19","unstructured":"Dana Farberr Cancer Institute (2024, November 29). Literature, Evidence and Research. Available online: https:\/\/www.vitaltalk.org\/evidence\/."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"644","DOI":"10.1016\/j.jpainsymman.2016.08.024","article-title":"A Communications Bundle to Improve Satisfaction for Critically Ill Patients and Their Families: A Prospective, Cohort Pilot Study","volume":"53","author":"Awdish","year":"2017","journal-title":"J. Pain Symptom Manag."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1177\/237437431400100103","article-title":"The REDE Model of Healthcare Communication: Optimizing Relationship as a Therapeutic Agent","volume":"1","author":"Windover","year":"2014","journal-title":"J. Patient Exp."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"e009032","DOI":"10.1136\/bmjopen-2015-009032","article-title":"Development of the Serious Illness Care Program: A Randomised Controlled Trial of a Palliative Care Communication Intervention","volume":"5","author":"Bernacki","year":"2015","journal-title":"BMJ Open"},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"801","DOI":"10.1001\/jamaoncol.2019.0292","article-title":"Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients with Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program","volume":"5","author":"Paladino","year":"2019","journal-title":"JAMA Oncol."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"983","DOI":"10.1016\/j.jsurg.2022.01.012","article-title":"Applying VitalTalkTM Techniques to Best Case\/Worst Case Training to Increase Scalability and Improve Surgeon Confidence in Shared Decision-Making","volume":"79","author":"Weill","year":"2022","journal-title":"J. Surg. Educ."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"864","DOI":"10.1046\/j.1525-1497.2003.20918.x","article-title":"The Long-Term Health Outcomes of Childhood Abuse","volume":"18","author":"Springer","year":"2003","journal-title":"J. Gen. Intern. Med."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"332","DOI":"10.1016\/S0002-9343(99)00235-1","article-title":"Adult Health Status of Women with Histories of Childhood Abuse and Neglect","volume":"107","author":"Walker","year":"1999","journal-title":"Am. J. Med."},{"key":"ref_27","unstructured":"Substance Abuse and Mental Health Services Administration (2014). SAMHSA\u2019s Concept of Trauma and Guidance for a Trauma-Informed Approach."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"970","DOI":"10.1001\/journalofethics.2017.19.10.ecas1-1710","article-title":"Cultivating Humility and Diagnostic Openness in Clinical Judgment","volume":"19","author":"Stone","year":"2017","journal-title":"AMA J. Ethics"},{"key":"ref_29","doi-asserted-by":"crossref","unstructured":"Koetke, J., Schumann, K., Bowes, S.M., and Vaupoti\u010d, N. (2024). The Effect of Seeing Scientists as Intellectually Humble on Trust in Scientists and Their Research. Nat. Hum. Behav., 1\u201314.","DOI":"10.1038\/s41562-024-02060-x"},{"key":"ref_30","unstructured":"Pietrzak-Franger, M. (2025, February 10). Rudolphina\u2014Research Magazine of the University of Vienna. Available online: https:\/\/rudolphina.univie.ac.at\/en\/long-covid-and-me-cfs-when-the-doctor-doesnt-believe-you."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"113369","DOI":"10.1016\/j.socscimed.2020.113369","article-title":"A Relational Analysis of an Invisible Illness: A Meta-Ethnography of People with Chronic Fatigue Syndrome\/Myalgic Encephalomyelitis (CFS\/ME) and Their Support Needs","volume":"265","author":"Pilkington","year":"2020","journal-title":"Soc. Sci. Med."},{"key":"ref_32","unstructured":"Saul, H. (2024, November 13). People with Chronic Fatigue Syndrome Want to Be Taken Seriously and to Receive Personalised, Empathetic Care. Available online: https:\/\/evidence.nihr.ac.uk\/alert\/cfs-me-people-want-personalised-empathetic-care\/."},{"key":"ref_33","unstructured":"Lowy, I. (2025, January 27). Long COVID, Chronic Fatigue Syndrome and Women: The Shadow of Hysteria. Available online: https:\/\/somatosphere.com\/2021\/long-covid.html\/."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"e2455430","DOI":"10.1001\/jamanetworkopen.2024.55430","article-title":"Sex Differences in Long COVID","volume":"8","author":"Shah","year":"2025","journal-title":"JAMA Netw. 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