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  1. Sly Saint

    UK: Reading Well books (formerly Books on Prescription): should books based on the deconditioning model of ME/CFS still be included?

    The book is also included on the Reading Well book list for Mental health as well as there is also this book Katharine Rimes and Trudie Chalder (2015). Overcoming Chronic fatigue in young people: A cognitive behavioural self-help guide. which is recommended reading by various children CF...
  2. Sly Saint

    UK: Reading Well books (formerly Books on Prescription): should books based on the deconditioning model of ME/CFS still be included?

    still recommended by: Royal Free https://www.royalfree.nhs.uk/services/fatigue-service South Tees NHS https://www.southtees.nhs.uk/services/infectious-diseases/chronic-fatigue-syndrome-me/patient-resources/ approved iapt reading...
  3. Sly Saint

    UK: Reading Well books (formerly Books on Prescription): should books based on the deconditioning model of ME/CFS still be included?

    and this given the changes in the guidelines this book should not be officially sanctioned reading by the health service. eta: it also perpetuates the ME/CFS = chronic fatigue issue.
  4. Sly Saint

    UK: Reading Well books (formerly Books on Prescription): should books based on the deconditioning model of ME/CFS still be included?

    I've changed the link from Amazon (which just turned into a general link for Amazon rather than the actual link to the book reviews). Google books (the 'new link' makes quite a big chunk of the beginning of the book available to read.) Basically its the usual 'boom and bust'/deconditioning...
  5. Sly Saint

    UK: Reading Well books (formerly Books on Prescription): should books based on the deconditioning model of ME/CFS still be included?

    https://reading-well.org.uk/ this was the list of books for LTC in 2020 https://tra-resources.s3.amazonaws.com/uploads/entries/document/2311/RWLTC_booklist_overview.pdf which included Chalder and Burgess' book "Overcoming Chronic Fatigue" and advertises itself as A Books on Prescription...
  6. Sly Saint

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Merged thread Ministers must address the inequalities experienced by those living with ME: - Carol Monaghan https://www.politics.co.uk/mp-comment/2023/11/02/carol-monaghan-without-delay-ministers-must-address-the-inequalities-experienced-by-those-living-with-me/
  7. Sly Saint

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study 2023, Novak

    Abstract Background Reduced preload and thoracic blood volume accompany postural tachycardia syndrome (POTS). Head-down tilt (HDT) increases both preload and intrathoracic blood volume. The objective of this study was to assess the safety and efficacy of HDT in POTS in acute settings. Methods...
  8. Sly Saint

    Thesis for the degree of Masters by Research (MSc Res) Hafouda: Mechanisms of fatigue: Determinants of observational effort judgement of exercising

    Dr. Yakeen Hafouda MBBCh Supervised by Dr. Hans-Peter Kubis School of Sport, Health and Exercise Sciences Bangor University https://research.bangor.ac.uk/portal/files/66884395/2023HafoudaMRes.pdf most of this thesis appears to have been 'lifted' from this paper...
  9. Sly Saint

    Genetic Risk Factors for Severe and Fatigue Dominant Long COVID and Commonalities with ME/CFS Identified by Combinatorial Analysis, 2023, Taylor et al

    published https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04588-4
  10. Sly Saint

    Review The long-term health outcomes, pathophysiological mechanisms and multidisciplinary management of long COVID 2023

    Abstract There have been hundreds of millions of cases of coronavirus disease 2019 (COVID-19), which is caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). With the growing population of recovered patients, it is crucial to understand the long-term consequences of the...
  11. Sly Saint

    Long Covid in the media and social media 2023

    Op-ed: Improving long COVID treatment by learning from the past https://www.hsph.harvard.edu/news/hsph-in-the-news/op-ed-improving-long-covid-treatment-by-learning-from-the-past/
  12. Sly Saint

    Focus on Post-Exertional Malaise [in] ME/CFS in specialist healthcare improves satisfaction, reduces deteriorations, 2023,Wormgoor Rodenberg

    Background: Post-Exertional Malaise (PEM) is considered a hallmark characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine...
  13. Sly Saint

    mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites, 2021, Mathur et al

    How can data management tools help us discover new treatments for a chronic disease? https://futurumcareers.com/how-can-data-management-tools-help-us-discover-new-treatments-for-a-chronic-disease
  14. Sly Saint

    Suramin as a possible treatment for Autism, ME CFS and Long Covid

    PaxMedica Acquires Suramin Research Assets from Rediscovery Life Sciences to Accelerate NDA Submission for PAX-101 PaxMedica Acquires Suramin Research Assets from Rediscovery Life Sciences to Accelerate NDA Submission for PAX-101 | Morningstar
  15. Sly Saint

    US: The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

    Long COVID patients aim to educate doctors about their disease Patients and patient advocates in New Hampshire will bring together experts from around the country at a symposium at Dartmouth in November Long COVID patients aim to educate doctors about their disease - The Boston Globe
  16. Sly Saint

    “It was almost like it’s set up for people to fail” A qualitative analysis of experiences and unmet supportive needs of people with Long COVID 2023,

    Abstract Background Almost twenty percent of adults with COVID-19 develop Long COVID, leading to prolonged symptoms and disability. Understanding the supportive needs of people with Long COVID is vital to enacting effective models of care and policies. Design/methods This qualitative sub-study...
  17. Sly Saint

    NHS Wales - Primary fatigue service

    I've only skimmed through the info on this website. The only reference to PEM comes a bit later on this page but the link doesn't appear to work (404).(?) https://ctmuhb.nhs.wales/services/primary-fatigue-service/fatigue/
  18. Sly Saint

    Redefining Disease: Are Bacteria and Viruses Behind Child Psychiatric Conditions?

    https://bnn.network/breaking-news/health/redefining-disease-are-bacteria-and-viruses-behind-child-psychiatric-conditions/
  19. Sly Saint

    UK Royal College of Psychiatrists

    still on their website site info is from 2015 and says due to be updated 2018........ https://www.rcpsych.ac.uk/mental-health/parents-and-young-people/information-for-parents-and-carers/chronic-fatigue-syndrome-for-parents @adambeyoncelowe
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