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Review Reframing Myalgic Encephalomyelitis/Chronic Fatigue ... 2025, Friedman

Discussion in 'ME/CFS research' started by John Mac, Apr 28, 2025 at 8:41 PM.

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  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Preprints.org

    preprints202504.2355.v1
     

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    John Mac, Apr 28, 2025 at 8:41 PM
    #1
  2. Nightsong

    Nightsong Senior Member (Voting Rights)

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    Abstract:
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17-24 million patients worldwide with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance.

    Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated, however, in-school, healthcare provider education is limited. To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on a ME/CFS-related topic.

    The efficacy of the program is demonstrated by the 2024-2025 first place scholarship winner’s essay which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients. For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student’s perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication in the journal Challenges.

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    Agarwal, P.; Friedman, K. J. Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients. Preprints 2025, 2025042355. https://doi.org/10.20944/preprints202504.2355.v1
     
    Nightsong, Apr 28, 2025 at 8:48 PM
    #2
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  3. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Utsikt, Apr 28, 2025 at 8:52 PM
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is a rather peculiar statement. I wonder who it is aimed at !

    The United States has produced the highest number of ME/CFS research publications, approximately 8,000, with the United Kingdom having produced under 6,000 articles. The United States has produced 37 of the most frequently cited top 100 articles, whereas the United Kingdom has produced 32. For this reason, this paper focuses mainly on data derived from U.S. studies.
     
    Jonathan Edwards, Apr 28, 2025 at 8:52 PM
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  5. Utsikt

    Utsikt Senior Member (Voting Rights)

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    From skimming the recommendations it seems like they went beyond the evidence.

    And there’s barely any talk about what PEM is and how to pace properly!
     
    Utsikt, Apr 28, 2025 at 9:02 PM
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  6. Trish

    Trish Moderator Staff Member

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    I have skimmed the article. It's a student essay that won a competition. There are some oddities like the reason given for only looking at US research, and overstating the research evidence, but they seem to have a reasonable grasp of the need for pacing, accessible medical care and support.
     
    Trish, Apr 28, 2025 at 9:17 PM
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  7. Hutan

    Hutan Moderator Staff Member

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    The full title is Reframing Myalgic Encephalopmyelitis/Chronic Fatigue Syndrome: Biological Basis of Disease and Recommendations for Supporting Patients

    The abstract makes no sense with the title - it's actually an explanation for how the essay came to be published. What this is the publishing of a student essay on ME/CFS, with the essay apparently tweaked a bit to make it international in scope rather than focused on the US situation. In what other disease affecting a lot of people would it be appropriate to publish a student essay? e.g. 'a medical student has read up a bit about multiple sclerosis, only looking at US literature, and here is their update on the disease'.

    Having an essay competition for medical students is fine, but people with ME/CFS deserve better than to have the results published as an update on the disease.
     
    Last edited: Apr 29, 2025 at 5:34 AM
    Hutan, Apr 28, 2025 at 9:20 PM
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  8. Trish

    Trish Moderator Staff Member

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    I agree. It's fine as a student project, but it's nowhere near worth publishing in a medical journal.
     
    Trish, Apr 28, 2025 at 9:28 PM
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Apr 28, 2025 at 9:34 PM
    #9
    Hutan likes this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Last edited by a moderator: Apr 29, 2025 at 5:40 AM
    Jonathan Edwards, Apr 28, 2025 at 10:01 PM
    #10
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  11. Hutan

    Hutan Moderator Staff Member

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    I mixed up my Friedmans and Friedbergs. Apologies. I have deleted my comment and its replies so as to not confuse people or unfairly criticise someone not involved.
     
    Last edited: Apr 29, 2025 at 5:56 AM
    Hutan, Apr 29, 2025 at 5:34 AM
    #11
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  12. dratalanta

    dratalanta Senior Member (Voting Rights)

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    Connoisseurs of bizarre ME-paper non-logic?
     
    dratalanta, Apr 29, 2025 at 6:32 AM
    #12
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