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  1. Andy

    Routine outcomes and evaluation of an 8-week outpatient multidisciplinary rehabilitative therapy program for FND 2023 Guy et al

    Abstract Objectives We report routinely collected outcome data from an 8-week outpatient rehabilitative therapy program. The aims of the intervention were to (1) reduce symptom severity and (2) improve functional mobility in adults with functional neurological disorder (FND). Methods The...
  2. Andy

    Organisation: International Patient and Public Involvement Network

    Yeah, with him involved my basic assumption is that this is more a talking shop than anything that actually gets stuff done.
  3. Andy

    Review Psychological interventions to improve ... hypermobility spectrum disorders and Ehlers-Danlos syndrome... 2023 Clark et al

    The corresponding author, Katherine Swainston, also had the same role for this study, What psychological interventions are effective for the management of (PPS)? A systematic review and meta-analysis, 2022, Swainston et al She is listed as based at Faculty of Medical Sciences, Newcastle...
  4. Andy

    Review Psychological interventions to improve ... hypermobility spectrum disorders and Ehlers-Danlos syndrome... 2023 Clark et al

    Full title: Psychological interventions to improve pain, fatigue, anxiety, depression, and quality of life in children and adults with hypermobility spectrum disorders and Ehlers-Danlos syndrome: a systematic review Abstract Hypermobility spectrum disorders (HSD) affect individuals across...
  5. Andy

    Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

    I would assume, based on their previous work that "Minimum exercise makes you physically tired" is meant to be asking about PEM.
  6. Andy

    Organisation: International Patient and Public Involvement Network

    Who are we? In 2017, a number of organisations and individuals from across the globe came together to form the International Patient and Public Involvement (PPI) Network. We believe that through the International PPI Network we can join together and enhance the opportunities such a network would...
  7. Andy

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Registration is available for the next webinar. Less Studied Pathologies: ME/CFS Research Roadmap Working Group of Council Webinar 7 of 8 - Jan 5, https://roseliassociates.zoomgov.com/webinar/register/WN_c0WYA2I6SRyV_nBGpSWWGw#/registration Ilene Ruhoy MD PhD posted on Twitter "Register now...
  8. Andy

    Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

    I would guess the value of this will depend on what use case they see for "a brief screening instrument". If it is intended to definitively identify ME/CFS then yes, that would be problematic; if it is intended as a list of questions to ask before a full investigation of symptoms then it might...
  9. Andy

    Long COVID and Chronic Conditions in the U.S. Workforce: Prevalence, Productivity Loss, and Disability 2023 Bonner and Ghouralal

    No mention of ME/CFS at all, in any form in the document. Does mention PEM in passing.
  10. Andy

    Long COVID and Chronic Conditions in the U.S. Workforce: Prevalence, Productivity Loss, and Disability 2023 Bonner and Ghouralal

    Abstract Objective This study examines how Long COVID, chronic conditions, and work outcomes affect the general workforce. Methods It examines the prevalence of Long COVID and its associations with chronic conditions, and other sociodemographic characteristics using 2022 National Health...
  11. Andy

    Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID Dec. 12-13, 2023

    Not really seen much of anything on Twitter apart from this from Todd Davenport from Workwell, "If I hear another researcher claim the six-minute walk test is a valid test of cardiorespiratory function in people living with PEM, I am going to scream loudly enough that you are going to hear it...
  12. Andy

    In vitro B cell experiments explore the role of CD24, CD38 and energy metabolism in ME/CFS, 2023, Armstrong et al

    Full paper isn't yet available so difficult to tell. Quite possible it is further analysis of existing data, and why Fane might be listed as an author.
  13. Andy

    Prolonged impacts of COVID-19-associated cystitis: A study on long-term consequences 2023 Wittenberg et al

    BACKGROUND The Coronavirus Disease 2019 (COVID-19) caused by the severe acute respiratory syndrome coronavirus 2 virus is an international health concern with substantial morbidity and mortality. COVID-associated cystitis (CAC), presents as new onset or exacerbated urinary symptoms, resembling...
  14. Andy

    Post-acute COVID-19 complications in UK doctors: results of a cross-sectional survey 2023 Bland et al

    Abstract Background As a consequence of their occupation, doctors and other healthcare workers were at higher risk of contracting coronavirus disease 2019 (COVID-19), and more likely to experience severe disease compared to the general population. However, systematic information on post-acute...
  15. Andy

    Efficient assessment of brain fog and fatigue: Development of the Fatigue and Altered Cognition Scale (FACs) 2023 Elliott et al

    Abstract Debilitating symptoms of fatigue and accompanying “brain fog” are observed among patients with various chronic health conditions. Unfortunately, an efficient and psychometrically sound instrument to assess these co-occurring symptoms is unavailable. Here, we report the development and...
  16. Andy

    A taxonomy of threat and soothing influences in rheumatic and musculoskeletal diseases and central sensitivity syndromes 2023 Hijne et al

    Abstract Background An imbalance in affect regulation, reflected by a hyperactive threat system and hypoactive soothing system, may impact physical symptoms in people with rheumatic and musculoskeletal diseases (RMD) and central sensitivity syndromes (CSS), including chronic fatigue syndrome...
  17. Andy

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    Trial By Error: Update on Our Letter Concerning the Prevalence of Functional Neurological Disorder In August, I submitted a letter to NeuroImage: Clinical concerning inflated rates of prevalence of functional neurological disorder, on behalf of myself and nine colleagues. After the letter went...
  18. Andy

    Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in” 2023 Wotherspoon

    Abstract This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME). While illness experience is a central concern of the sociology of health and illness, experiences of loneliness alongside contested and chronic illness have received...
  19. Andy

    Targeting persistent fatigue ... in adolescents and young adults with a fatigue syndrome or rheumatic condition... 2023 Vroegindeweij et al

    Full title: Targeting persistent fatigue with tailored versus generic self-management strategies in adolescents and young adults with a fatigue syndrome or rheumatic condition: A randomized crossover trial Objectives To evaluate the use of two self-management intervention strategies for...
  20. Andy

    NHS talking therapy recommended for menopause symptoms

    Yes, you could probably find examples of CBT being recommended to treat all of those somewhere, but if we are talking mainstream current recommendations, Yes, of course. Only as support. Only as support. Yes, of course. While I don't disagree that, on average, women are treated more badly...
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