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  1. MSEsperanza
    Post

    Trial Report The presence of attentional and interpretation biases in patients with severe MS-related fatigue (also ME/CFS), 2024, Knoop, Moss-Morris et al

    From the quotes Hutan on which commented above "Several studies in ME/CFS, which is defined by severe and debilitating fatigue with no known...
    Post by: MSEsperanza, Mar 30, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  2. MSEsperanza
    Post

    Articular cartilage damage

    Now am very exhausted just from going to the loo and other basic activities: For seven weeks, I'm not allowed to use my left leg/ stand on my left...
    Post by: MSEsperanza, Mar 21, 2024 in forum: Other specific illnesses
  3. MSEsperanza
    Thread

    Articular cartilage damage

    Was only diagnosed with this after falling badly which left my knee not only much more painful than before but also couldn't move it as I used to...
    Thread by: MSEsperanza, Mar 21, 2024, 1 replies, in forum: Other specific illnesses
  4. MSEsperanza
    Post

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Thank you to everybody looking in detail at the paper. The statistics and other mathematical details are beyond me. Only able to skim anyway so...
    Post by: MSEsperanza, Mar 12, 2024 in forum: ME/CFS research
  5. MSEsperanza
    Post

    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman

    Plus, I realize I might not be representative but for me, having a 30-45 minutes conversation is more exhausting than doing a CPET and will cause...
    Post by: MSEsperanza, Mar 12, 2024 in forum: ME/CFS research
  6. MSEsperanza
    Post

    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman

    Only skimmed part of the paper -- how they measured PEM. Thought there are a couple of points worthwhile to discuss: "All interviews were...
    Post by: MSEsperanza, Mar 12, 2024 in forum: ME/CFS research
  7. MSEsperanza
    Post

    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman

    The results from the visual analogue scale (VAS) = quantitative data?
    Post by: MSEsperanza, Mar 12, 2024 in forum: ME/CFS research
  8. MSEsperanza
    Post

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    Another of my favorites is that paragraph on endpoints: "In 2019, stakeholder feedback regarding the NICE guideline on depression expressed...
    Post by: MSEsperanza, Feb 28, 2024 in forum: ME/CFS research
  9. MSEsperanza
    Post

    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Fall 2023

    Maybe we all should collect them / can use them for a gigantic piece of mail art? In better times, I used to use the nicely colored paperboard of...
    Post by: MSEsperanza, Dec 18, 2023 in forum: Fundraising
  10. MSEsperanza
    Post

    Persistent SOMAtic symptoms ACROSS diseases [SOMACROSS]—from risk factors to modification: scientific framework & overarching protocol, 2022

    Protocol for the Long Covid sub-project now published, see this thread: Apologies for repeating myself: A critique seems even more warranted...
    Post by: MSEsperanza, Nov 5, 2023 in forum: Other psychosomatic news and research
  11. MSEsperanza
    Post

    Improving Wikipedia's references to ME/CFS

    Just saw that there's a wikipedia page on David Tuller :) @dave30th : https://en.wikipedia.org/wiki/David_Tuller From Wikipedia:...
    Post by: MSEsperanza, Oct 4, 2023 in forum: Advocacy Projects and Campaigns
  12. MSEsperanza
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I expect JNNP people have already shared it with all the authors/ signatories of the anomalies piece and want to give them the opportunity to...
    Post by: MSEsperanza, Oct 4, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  13. MSEsperanza
    Post

    Retraction Watch article: New feature aims to draw journals into post-publication comments on PubPeer

    From another thread: There's also an extension for Firefox -- works on my laptop both with windows 10 and ubuntu (dual boot). A note and link...
    Post by: MSEsperanza, Sep 28, 2023 in forum: Other health news and research
  14. MSEsperanza
    Post

    COMET initiative: Core Outcome Set for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    Thanks for posting -- both to Scott and Dolphin. Transcript: Heads up! A threat to our community: A known psychologizer of #MEcfs and #LongCovid...
    Post by: MSEsperanza, Sep 27, 2023 in forum: Psychosomatic news - ME/CFS and Long Covid
  15. MSEsperanza
    Post

    Webinar: HE 13: Epidemiological sleight of hand and Medically Unexplained Symptoms, David Tuller, Tues 18th Oct, 2022

    Thanks for posting. David Tuller: "Whatever these conditions are called, it has been my observation that investigators who focus on...
    Post by: MSEsperanza, Sep 20, 2023 in forum: Psychosomatic news - ME/CFS and Long Covid
  16. MSEsperanza
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    If I remember correctly, Tovey finally agreed with the authors to let an arbiter decide about the conclusions regarding the quality of evidence...
    Post by: MSEsperanza, Sep 18, 2023 in forum: Petitions
  17. MSEsperanza
    Post

    Review Effectiveness of physical activity interventions on reducing perceived fatigue among adults with chronic conditions: .. review.., 2023, Barakou et a

    Perhaps that's the reason why the authors didn't include any trials on exercise for CFS or ME/CFS in their review -- despite promoting a...
    Post by: MSEsperanza, Sep 5, 2023 in forum: 'Conditions related to ME/CFS' news and research
  18. MSEsperanza
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Not sure about the whole comment, but the 'balance' bit seems most problematic to me, too. Balance is not needed to have patients' wellbeing at...
    Post by: MSEsperanza, Aug 9, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  19. MSEsperanza
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Moss-Morris also missing from the list, but a paper of hers referenced as evidence for the "negotiating" bit: Supplementary Table 3: Other...
    Post by: MSEsperanza, Jul 31, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  20. MSEsperanza
    Post

    Anti-ganglionic acetylcholine receptor antibodies in functional neurological symptom disorder/conversion disorder, 2023, Nagata et al

    I think investigating these 9 patients' illness / diagnosis trajectory, including reviewing the diagnosing clinicians' thoughts and decisions...
    Post by: MSEsperanza, Jul 31, 2023 in forum: 'Conditions related to ME/CFS' news and research
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