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  1. Sly Saint

    International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

    Merged thread on the WHO website: 'chronic fatigue'? https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome
  2. Sly Saint

    Researchers’ experiences with patient engagement in health research: a scoping review and thematic synthesis 2023, Pratte et al

    Abstract Context Implicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health...
  3. Sly Saint

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    'exercise chronic fatigue syndrome' search this comes up: https://www.cochrane.org/search/site/exercise chronic fatigue syndrome eta: no warning, or advice that the review is 'under review'.
  4. Sly Saint

    Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - report issued April 2023

    Long COVID education should be part of CPD: Report The Government has committed to a national plan and more funds, while the RACGP’s Professor Mark Morgan says more immediate help is needed. https://www1.racgp.org.au/newsgp/clinical/long-covid-education-should-be-part-of-cpd-report
  5. Sly Saint

    User involvement in a Cochrane systematic review: using structured methods to enhance the clinical relevance, usefulness ..., 2015, Pollock et al.

    User involvement in a Cochrane systematic review: using structured methods to enhance the clinical relevance, usefulness and usability of a systematic review update 2015 Authors Abstract Background This paper describes the structured methods used to involve patients, carers and health...
  6. Sly Saint

    High body temperature

    Night sweats are common. Mine are usually around 4-5 am (note: not menopause). It is also a circadian rhythm thing. If you do a general search on 'sweats' on the forum you'll see others experiences.
  7. Sly Saint

    Cochrane review: What are the benefits and risks of exercise for people with systemic lupus erythematosus?

    Published: 19 April 2023 Authors: Frade S, O'Neill S, Greene D, Nutter E, Cameron M https://www.cochrane.org/CD014816/MUSKEL_what-are-benefits-and-risks-exercise-people-systemic-lupus-erythematosus full review here...
  8. Sly Saint

    Effect of transcutaneous auricular vagal nerve stimulation on the fatigue syndrome in patients with gastrointestinal cancers — FATIVA: a randomized

    Effect of transcutaneous auricular vagal nerve stimulation on the fatigue syndrome in patients with gastrointestinal cancers — FATIVA: a randomized, placebo-controlled pilot study protocol Abstract Background Cancer-related fatigue (CRF) is defined as a “distressing, persistent, subjective...
  9. Sly Saint

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I did a quick search on the Cochrane library on post-covid and exercise; 391 results. Presumably they are using the WHO 'living' guideline/definition of LC? If this was influenced by the Cochrane exercise review for CFS then it is potentially not only ME/CFS patients being harmed by the failure...
  10. Sly Saint

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    just a reminder NG206 Evidence review https://www.nice.org.uk/guidance/ng206/evidence/g-nonpharmacological-management-of-mecfs-pdf-9265183028 ("See the excluded studies list in appendices.", does anyone know where these are exactly?)
  11. Sly Saint

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    DWP issues crucial update for benefit claimants on plans to begin testing matching people’s health conditions to 'specialist assessors'
  12. Sly Saint

    Chronic and delayed neurological manifestations of persistent infections 2023, Pandya & Johnson

    Abstract Purpose of the review Persistent infections capable of causing central nervous system (CNS) complications months or years after the initial infection represent a major public health concern. This concern is particularly relevant considering the ongoing coronavirus disease 2019...
  13. Sly Saint

    RESToRE exercise trial for long COVID, Columbia University Irving Medical Center, 2023

    Posts moved from this thread: Exercise Intolerance Associated with Impaired Oxygen Extraction in Patients with Long COVID 2023 Norweg et al ___________ https://www.vagelos.columbia.edu/research/areas-research/norweg-lab/our-research/restore
  14. Sly Saint

    Priority setting for children and young people with chronic conditions and disabilities (Australia)

    Background The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. Methods We...
  15. Sly Saint

    Fifteen-minute consultation: Managing post-COVID-19 syndrome (long COVID) in children and young people 2023,Wacks, Gregorowski et al

    Abstract Post-COVID-19 syndrome is a new condition that can have a major impact on the physical and mental well-being of children and young people, affecting their ability to access activities including education. Paediatricians and general practitioners need to be able to assess and manage...
  16. Sly Saint

    USA Stat News: The NIH has poured $1 billion into long Covid research — with little to show for it

    Didn't a similar thing happen with ME/CFS funding back in the '80s(?), when a large sum of money was supposedly 'ring fenced' for CFS research (NIH/CDC?) and then later it was shown to have been spent on all sorts of un-related projects. It was nowhere near a billion but still a lot of money wasted.
  17. Sly Saint

    United Kingdom: London - Royal Free Hospital CFS services

    job ad Band 7 Clinical or Counselling Psychologist https://healthjobs.bmj.com/job/104648/band-7-clinical-or-counselling-psychologist/ would be interesting to know if the number of psychologists at me/cfs clinics in the uk has gone up or down since the new guidelines.
  18. Sly Saint

    Long COVID: a review and proposed visualization of the complexity of long COVID 2023,Perumal et al

    Post-Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus – 2 (SARS-CoV-2) infection, or Long COVID, is a prevailing second pandemic with nearly 100 million affected individuals globally and counting. We propose a visual description of the complexity of Long COVID and its pathogenesis...
  19. Sly Saint

    News from Germany

    German Bundestag – Experts call for help for patients with ME/CFS https://www.breakinglatest.news/health/german-bundestag-experts-call-for-help-for-patients-with-me-cfs/
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