PONE-D-24-18210R1Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative studyPLOS ONE

Dear Dr. O'Brien,

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. Two expert reviewers with considerable knowledge of Long COVID have reviewed your paper and offered comments.  Based on their comments, I am offering a decision of Minor Revision.  Both reviewers have some suggestions for framing the paper, with more of an eye to "mere disability" and/or "disability justice" frameworks.  Reviewer 2 also has some questions about the sample, and recommends a deeper dive in the discussion section.  Please attend to all comments.

Please submit your revised manuscript by Dec 19 2024 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.

Please include the following items when submitting your revised manuscript:

• A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.
• A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.
• An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols . Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. 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,

Ellen L. Idler

Academic Editor

PLOS ONE

Journal Requirements:

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

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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: (No Response)

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: I Don't Know

Reviewer #2: (No Response)

**********

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.

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: In my estimation, the current manuscript has been substantively revised and merits publication pending minor revisions.

At present, the authors do not consider the possibility (and, in my own view, an actuality for most disabilities) that disability can be a mere difference (as opposed to a bad difference), such that disabilities need not necessarily be "cured" or "treated" any more than left-handedness or gayness can be cured or treated. This is significant, given the authors' focus on Long COVID as a potentially and variably disabling condition. This paper would be strengthened if the authors demonstrated some awareness of, and engagement with, this view -- including how this view impacts their Episodic Disability Framework (EDF). Below, I list some suggestions for engaging with the mere difference view of disability.

SUGGESTED READINGS ON DISABILITY AS MERE DIFFERENCE

1. Barnes, E. (2016) The Minority Body: A Theory of Disability. NY: Oxford University Press.

2. Barnes, E. (2023) Health Problems: Philosophical Puzzles About the Nature of Health. NY: Oxford University Press.

3. Hereth, B, P Tubig, A Sorrels, A Muldoon, K Hills, & NG Evans. (2022) "Long Covid and Disability: A Brave New World," BMJ 378: e069868. DOI: https://doi.org/10.1136/bmj-2021-069868.

4. Nadelhoffer, T. (2022) "Chronic Pain, Mere-Differences, and Disability Variantism," Journal of Philosophy of Disability 2: 6-27. DOI: https://doi.org/10.5840/jpd20223110.

5. Crawley, T. (2022) "What is the Bad-Difference View of Disability?" Journal of Ethics and Social Philosophy 21.3: 422-451. DOI: https://doi.org/10.26556/jesp.v21i3.1201.

Reviewer #2: I very much enjoyed reading this paper - it addresses one of the most pressing health challenges of our time, and I found the application of the EDF useful.

A few minor revisions are needed:

1) You indicate that long covid is a diagnosis of exclusion - it would be good to see a bit more about how difficult it is to get a diagnosis and also a note that much of the current scientific work on long covid is focused on finding biomarkers (which is contested by some in the disability community). I think signaling that all of this is taking place would help you set the context for the EDF.

2) Analysis - can you say more about how the domains of your a priori framework were merged with emergent themes (grounded theory)?

3) Results - Participants - I found myself really wanting more information on the participants as I read the results, as prior work has shown low socioeconomic status and being a woman is associated with long covid - associations with race/ethnicity have been contested, as reaching a diagnosis for marginalized identities introduces confounders. The conversation around this under the 'Personal Attributes' subsection near the end of Results felt buried and very central to any disability justice conversation.

4) The word "challenges" is used quite a bit throughout the paper, which I appreciate is a gloss for a wide range of negative/effortful experiences. However, I thought the word 'challenges' was a misnomer for what is described in the "Challenges to Social Inclusion" section.

5) The discussion felt thin - it would be good to have further connection to current disability rights efforts since the EDF is the frame of the paper. I was also surprised not to see any connection made in the discussion to HIV/AIDS activism/policy, since that is the roots of the EDF.

Thank you again for this important contribution to the literature.

**********

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 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 Privacy Policy .

Reviewer #1: No

Reviewer #2: 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.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/ . PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org . Please note that Supporting Information files do not need this step.

PONE-D-24-18210R1Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative studyPLOS ONE

Dear Dr. O'Brien,

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. Two expert reviewers with considerable knowledge of Long COVID have reviewed your paper and offered comments.  Based on their comments, I am offering a decision of Minor Revision.  Both reviewers have some suggestions for framing the paper, with more of an eye to "mere disability" and/or "disability justice" frameworks.  Reviewer 2 also has some questions about the sample, and recommends a deeper dive in the discussion section.  Please attend to all comments.

Please submit your revised manuscript by Dec 19 2024 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.

Please include the following items when submitting your revised manuscript:

• A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.
• A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.
• An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols . Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. 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,

Ellen L. Idler

Academic Editor

PLOS ONE

Journal Requirements:

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

[Note: HTML markup is below. Please do not edit.]

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: (No Response)

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: I Don't Know

Reviewer #2: (No Response)

**********

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.

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: In my estimation, the current manuscript has been substantively revised and merits publication pending minor revisions.

At present, the authors do not consider the possibility (and, in my own view, an actuality for most disabilities) that disability can be a mere difference (as opposed to a bad difference), such that disabilities need not necessarily be "cured" or "treated" any more than left-handedness or gayness can be cured or treated. This is significant, given the authors' focus on Long COVID as a potentially and variably disabling condition. This paper would be strengthened if the authors demonstrated some awareness of, and engagement with, this view -- including how this view impacts their Episodic Disability Framework (EDF). Below, I list some suggestions for engaging with the mere difference view of disability.

SUGGESTED READINGS ON DISABILITY AS MERE DIFFERENCE

1. Barnes, E. (2016) The Minority Body: A Theory of Disability. NY: Oxford University Press.

2. Barnes, E. (2023) Health Problems: Philosophical Puzzles About the Nature of Health. NY: Oxford University Press.

3. Hereth, B, P Tubig, A Sorrels, A Muldoon, K Hills, & NG Evans. (2022) "Long Covid and Disability: A Brave New World," BMJ 378: e069868. DOI: https://doi.org/10.1136/bmj-2021-069868.

4. Nadelhoffer, T. (2022) "Chronic Pain, Mere-Differences, and Disability Variantism," Journal of Philosophy of Disability 2: 6-27. DOI: https://doi.org/10.5840/jpd20223110.

5. Crawley, T. (2022) "What is the Bad-Difference View of Disability?" Journal of Ethics and Social Philosophy 21.3: 422-451. DOI: https://doi.org/10.26556/jesp.v21i3.1201.

Reviewer #2: I very much enjoyed reading this paper - it addresses one of the most pressing health challenges of our time, and I found the application of the EDF useful.

A few minor revisions are needed:

1) You indicate that long covid is a diagnosis of exclusion - it would be good to see a bit more about how difficult it is to get a diagnosis and also a note that much of the current scientific work on long covid is focused on finding biomarkers (which is contested by some in the disability community). I think signaling that all of this is taking place would help you set the context for the EDF.

2) Analysis - can you say more about how the domains of your a priori framework were merged with emergent themes (grounded theory)?

3) Results - Participants - I found myself really wanting more information on the participants as I read the results, as prior work has shown low socioeconomic status and being a woman is associated with long covid - associations with race/ethnicity have been contested, as reaching a diagnosis for marginalized identities introduces confounders. The conversation around this under the 'Personal Attributes' subsection near the end of Results felt buried and very central to any disability justice conversation.

4) The word "challenges" is used quite a bit throughout the paper, which I appreciate is a gloss for a wide range of negative/effortful experiences. However, I thought the word 'challenges' was a misnomer for what is described in the "Challenges to Social Inclusion" section.

5) The discussion felt thin - it would be good to have further connection to current disability rights efforts since the EDF is the frame of the paper. I was also surprised not to see any connection made in the discussion to HIV/AIDS activism/policy, since that is the roots of the EDF.

Thank you again for this important contribution to the literature.

**********

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 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 Privacy Policy .

Reviewer #1: No

Reviewer #2: 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.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/ . PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org . Please note that Supporting Information files do not need this step.

Episodic Disability Framework in the context of Long COVID: Findings from a community-engaged international qualitative study

PONE-D-24-18210R2

Dear Dr. O'Brien,

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. If you have any questions relating to publication charges, please contact our Author Billing department directly at authorbilling@plos.org.

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,

Ellen L. Idler

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: All comments have been addressed

**********

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: N/A

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.

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: My thanks to the authors for their careful and thoughtful inclusion of philosophical/bioethical literature on mere-difference views of disability. Their inclusion strengthens the paper.

Reviewer #2: (No Response)

**********

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 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 Privacy Policy .

Reviewer #1: No

Reviewer #2: No

**********