Peer Review History
| Original SubmissionAugust 14, 2025 |
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-->PONE-D-25-44193-->-->Investigating the ME/CFS experience through qualitative analysis of memorial entries-->-->PLOS One Dear Dr. Sirotiak, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. Please submit your revised manuscript by Feb 13 2026 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org . When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript:-->
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Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols .. We look forward to receiving your revised manuscript. Kind regards, Tanja Grubić Kezele, Ph.D., M.D. Academic Editor PLOS One Journal Requirements: When submitting your revision, we need you to address these additional requirements. 1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and 2. If the reviewer comments include a recommendation to cite specific previously published works, please review and evaluate these publications to determine whether they are relevant and should be cited. There is no requirement to cite these works unless the editor has indicated otherwise. Additional Editor Comments: Based on the reviewers' suggestions, the paper needs a major revision. The reviewers' comments can be found below. [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions -->Comments to the Author 1. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. --> Reviewer #1: Partly Reviewer #2: Yes Reviewer #3: Yes ********** -->2. Has the statistical analysis been performed appropriately and rigorously? --> Reviewer #1: N/A Reviewer #2: Yes Reviewer #3: Yes ********** -->3. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.-->requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.--> Reviewer #1: Yes Reviewer #2: Yes Reviewer #3: Yes ********** -->4. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.--> Reviewer #1: Yes Reviewer #2: Yes Reviewer #3: Yes ********** -->5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)--> Reviewer #1: Overall Assessment This manuscript presents a thoughtful and emotionally resonant qualitative study exploring the lived experiences of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as represented through 505 memorial entries on the National CFIDS Foundation website. Using inductive thematic analysis, the authors identify four interconnected domains—systemic neglect and institutional failure, clinical neglect and failures, social disconnection and advocacy, and personal burden and quality of life. The manuscript contributes novel qualitative insights into the psychosocial and systemic dimensions of ME/CFS-related mortality. The paper is generally well organized, conceptually grounded, and written in clear academic prose. The authors appropriately situate their work within prior ME/CFS research and employ a theoretically sound analytic framework (reflexive thematic analysis within an ecological systems perspective). However, the manuscript would benefit from greater methodological transparency, theoretical integration, and refinement of the discussion to enhance its scientific rigor and interpretive depth. Major Comments 1. Methodological Rigor and Transparency Sampling and Data Source: The use of publicly available memorial entries is innovative but introduces potential selection and interpretive bias. The authors acknowledge this briefly but should elaborate on how such memorials might disproportionately represent more severe cases or those with greater advocacy engagement. A short section on data provenance and limitations of second-hand accounts would strengthen credibility. Analytic Process: The manuscript describes inductive coding and theme generation but omits sufficient detail on the codebook development, reflexivity, and researcher positionality. Reflexive thematic analysis (per Braun & Clarke) emphasizes these aspects. The authors should specify: How disagreements between coders were resolved beyond “discussion.” Whether NVivo or another tool was used for coding. How saturation was assessed. Any steps taken to enhance analytic trustworthiness (e.g., audit trail, peer debriefing). Ethical Considerations: While the dataset is public, ethical discussion could be expanded. The authors might comment on the potential sensitivity of analyzing memorial narratives and their decision to retain pronouns but omit names. 2. Theoretical Framing The manuscript references an ecological systems approach (Bronfenbrenner, 1977) but does not operationalize it clearly. Consider explicitly mapping findings to the microsystem, mesosystem, exosystem, and macrosystem levels rather than using the four-level structure as a loose analogy. The analysis could benefit from integrating sociological theories of stigma, chronic illness identity, and medical mistrust to contextualize systemic and clinical neglect (e.g., Goffman’s stigma framework, Kleinman’s explanatory models). 3. Interpretation and Discussion Novelty and Contribution: The study expands upon prior quantitative mortality work (e.g., Jason et al., 2006; Sirotiak & Amro, 2025). However, the discussion often repeats descriptive findings rather than advancing interpretive insights. The authors could discuss how memorial discourse itself functions—both as a site of grief expression and as activism within patient communities. Causality and Attribution: Some memorial narratives attribute deaths to ME/CFS or associated conditions. While these perceptions are meaningful, the paper should more clearly distinguish perceived from documented cause of death to avoid overstating medical conclusions. Suicide Contextualization: The rich qualitative material on suicidality could be expanded with references to chronic pain–related suicide frameworks and hopelessness models to connect individual narratives to broader psychosocial theories. 4. Presentation and Structure The Results section is comprehensive but overly lengthy. Condensing exemplar quotations and focusing on the interpretive synthesis rather than repetition would improve readability. The Figure 1 conceptual model is valuable; however, it should be simplified visually and accompanied by a concise explanation linking each thematic layer to Bronfenbrenner’s systems. The Abstract slightly overstates the analytical rigor (“inductively developing a codebook” and “themes emerged within four societal levels”). Consider clarifying that this is a reflexive thematic analysis of public memorial narratives rather than primary participant data. Minor Comments Line 79–82: “underfunded and under-researched” — include citation to NIH funding statistics (e.g., Dimmock et al., 2020) for context. Line 138: “Interrater reliability was not assessed” — briefly justify this decision per Braun & Clarke (2021) guidance. Ensure consistent formatting of “CFIDS/ME” versus “ME/CFS.” Typographical and stylistic issues: remove redundant spaces, align reference formatting with PLOS ONE style. Consider shortening the Acknowledgements section—“The authors have no acknowledgements” is unnecessary; simply omit. Recommendation Recommendation: Major Revision This manuscript offers a valuable qualitative perspective on mortality and lived experience in ME/CFS, addressing an underexplored area of research. However, to meet PLOS ONE’s standards for qualitative rigor and interpretive depth, the authors should strengthen methodological transparency, theoretical grounding, and critical interpretation. With revision, this paper could make a meaningful contribution to the literature on ME/CFS, health inequities, and chronic illness experiences. Reviewer #2: Abstract Additional symptoms could be included to better capture the breadth of experiences described. Introduction This is a well-written section. The authors may wish to consider integrating the following reference to further strengthen the context: Thornton EJ, Hayes LD, Goodwin DS, Sculthorpe N, Prior Y, Sanal-Hayes NEM. Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops. Am J Med. 2025 Jun;138(6):1001–1009. doi:10.1016/j.amjmed.2025.02.008. Materials and Methods This section is well written and requires no revisions. Results In the opening paragraph, clearly outlining the main themes and subthemes would help guide the reader. The theme titled “Systemic neglect and institutional failure” appears to lack clarity regarding its structure. It is unclear whether this is intended as a main theme, with elements such as “lack of acknowledgement” presented as subthemes. Clarifying this hierarchy would improve readability for all sections. Discussion The first paragraph should briefly outline the key themes and discuss the main findings, rather than reiterating the introduction or the study’s significance, which should already be clear. Line 538 requires additional references. Lines 638–659 also require supporting references. Additionally, including participant excerpts in the discussion section is not appropriate, instead, these excerpts should be interpreted and discussed. Reviewer #3: This study conducted a thematic analysis of the memorial entries from the National CFIDS Foundation memorial list submitted by family, friends, or acquaintances following the deaths of individuals living with CFS/ME. The data for the study are publicly available National CFIDS Foundation memorial list. The manuscript is well-written, well structured, clear in reasoning, premises and conclusions. The writing clearly lays out and justifies the aims of research, the justification, the nature of the methodology applied, and the limitations. The authors have provided detailed descriptions of the themes identified from the memorial entries, and explained their reasoning process, and provided data to back up their conclusions. It might be informative for the readers if the authors included a coding manual, similar to previous thematic analysis studies, (e.g. Picariello, F., Ali, S., Moss-Morris, R., & Chalder, T. (2015). The most popular terms for medically unexplained symptoms: the views of CFS patients. Journal of psychosomatic research, 78(5), 420-426.) to help present methodological steps in a concise and clear way. ********** -->6. PLOS authors have the option to publish the peer review history of their article (what does this mean? ). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our For information about this choice, including consent withdrawal, please see our Privacy Policy .-->.--> Reviewer #1: No Reviewer #2: No Reviewer #3: No ********** [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] To ensure your figures meet our technical requirements, please review our figure guidelines: https://journals.plos.org/plosone/s/figures You may also use PLOS’s free figure tool, NAAS, to help you prepare publication quality figures: https://journals.plos.org/plosone/s/figures#loc-tools-for-figure-preparation. 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| Revision 1 |
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Investigating the ME/CFS experience through qualitative analysis of memorial entries PONE-D-25-44193R1 Dear Dr. Sirotiak, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice will be generated when your article is formally accepted. Please note, if your institution has a publishing partnership with PLOS and your article meets the relevant criteria, all or part of your publication costs will be covered. Please make sure your user information is up-to-date by logging into Editorial Manager at Editorial Manager® and clicking the ‘Update My Information' link at the top of the page. For questions related to billing, please contact and clicking the ‘Update My Information' link at the top of the page. For questions related to billing, please contact billing support .. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Tanja Grubić Kezele, Ph.D., M.D. Academic Editor PLOS One Additional Editor Comments (optional): Reviewers' comments: Reviewer's Responses to Questions -->Comments to the Author 1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.--> Reviewer #1: All comments have been addressed Reviewer #2: (No Response) ********** -->2. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. --> Reviewer #1: Yes Reviewer #2: Yes ********** -->3. Has the statistical analysis been performed appropriately and rigorously? --> Reviewer #1: Yes Reviewer #2: Yes ********** -->4. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.-->requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.--> Reviewer #1: Yes Reviewer #2: Yes ********** -->5. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.--> Reviewer #1: Yes Reviewer #2: Yes ********** -->6. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)--> Reviewer #1: The authors have adequately and thoughtfully addressed all of my prior questions and comments. The revised manuscript is substantially strengthened, particularly with respect to methodological transparency, theoretical framing, and clarity of interpretation. The qualitative analytic approach is appropriate for the research aims, and the use of publicly available memorial narratives is handled with care, reflexivity, and appropriate ethical consideration. This study makes a meaningful contribution to the ME/CFS literature by providing rich qualitative insight into lived experience, systemic and clinical barriers, and perceptions surrounding mortality—an area that remains underexplored despite growing quantitative evidence. The authors clearly articulate limitations inherent to secondary analysis of memorial data and avoid overstating causal claims, while still offering important interpretive insights with relevance for research, clinical practice, and health policy. The manuscript is well organized, clearly written, and theoretically grounded. Ethical considerations, including privacy protection and sensitivity to the nature of memorial narratives, are appropriately addressed. I have no concerns regarding dual publication, research ethics, or publication ethics. The work appears original, transparently reported, and compliant with journal standards. Based on the quality of the revisions and the overall rigor and contribution of the manuscript, I recommend this paper for publication. Reviewer #2: Thank you for addressing all comments especially the integration of more literature and references. ********** -->7. PLOS authors have the option to publish the peer review history of their article (what does this mean? ). If published, this will include your full peer review and any attached files.). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our For information about this choice, including consent withdrawal, please see our Privacy Policy .-->.--> Reviewer #1: Yes: Patrick C. HardiganPatrick C. Hardigan Reviewer #2: No ********** |
| Formally Accepted |
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PONE-D-25-44193R1 PLOS One Dear Dr. Sirotiak, I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS One. Congratulations! Your manuscript is now being handed over to our production team. At this stage, our production department will prepare your paper for publication. This includes ensuring the following: * All references, tables, and figures are properly cited * All relevant supporting information is included in the manuscript submission, * There are no issues that prevent the paper from being properly typeset You will receive further instructions from the production team, including instructions on how to review your proof when it is ready. Please keep in mind that we are working through a large volume of accepted articles, so please give us a few days to review your paper and let you know the next and final steps. Lastly, if your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. You will receive an invoice from PLOS for your publication fee after your manuscript has reached the completed accept phase. If you receive an email requesting payment before acceptance or for any other service, this may be a phishing scheme. Learn how to identify phishing emails and protect your accounts at https://explore.plos.org/phishing. If we can help with anything else, please email us at customercare@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Prof. dr. Tanja Grubić Kezele Academic Editor PLOS One |
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