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    Clinical trial outcome measures of improvement and recovery in ME/CFS - which ones are useful? Discussion thread

    A PSP question ..... ?
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    Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome - Komaroff, Lipkin 2021

    Emotional stress can be like kryptonite here.
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Perhaps it has all the places highlighted where he went in 2020 .... when he was ill ...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yep. Trim may differ but what's under the bonnet dosnt. Model T get Model T Apt ModelT gat Model T act Model T .....
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    BPS attempts at psychologizing Long Covid

    Long Covid from around 22mins in. Gaslighting. All in head and academic exceptionalism mentioned Double Down News
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    UK: Priority Setting Partnership for ME/CFS

    Yes. My thoughts too. Especially given the quality if recent uk paediatric research papers. Although most that I know here are now over 16 . I' ll do some prodding...
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    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    this may make no sense at all as I am woefully ignorant of exercise chemisty and physiology- but could this be linked to proteomics studies which show that females are more likely to utilise protein as fuel when glycolysis is dodgy and not not fat as males do? Would this be a more common...
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    UK: Priority Setting Partnership for ME/CFS

    Responses up to 6th June 2020 - summary Total 831 responses of which 711 are those diagnosed with ME at any time aged 16 or older 138 are carers/ family 53 are health care professionals who work...
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    UK: Priority Setting Partnership for ME/CFS

    Will update from laptop in morning . Phone is too easy to mistype.
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    The role of lifetime stressors in adult fibromyalgia: systematic review and meta-analysis of case-control studies, Kaleycheva, Chalder et al, 2021

    Thank you @Joan Crawford . A well composed response .
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    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    Info on L form.bacteria https://royalsocietypublishing.org/doi/10.1098/rstb.2015.0494 Marshall Protocol also has info
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    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    from memory ( so may be wrong as it's currently 4.15am and little sleep ) from plant research L form bacteria have a weird way of combining with proteins and this can be used to develop disease resistance Sleep deprived thought- if there is a weird protein mechanism does this circle back to...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    This.
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    Long COVID in children: Partnerships between families and paediatricians are a priority for better care, 2021, Buonsenso et al

    Plus ca change ... Given the current paediatric paradigm for ME be careful what you wish for ..
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    Clare Gerada: influence on UK medical practice and ME/CFS management

    And who leads multi disciplinary teams ?
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    UK: NHS data sharing – deadline imminent

    My understanding is that this is England and perhaps England and Wales. Health is devolved at the moment so this would not pertain in Scotland.
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    Muscle cramps

    Thank you. Not quite the same but perhaps some overlapping. Calcium plays so many roles it's likely to be part of it.
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    Muscle cramps

    Muscle cramps are becoming a real issue for my daughter - this is general but eyes , neck and stomach seem to be particularly affected. Her eyes feel permanently strained ( describes as hanging from eye hooks) and gut muscles are so tight that she cannot be physically sick. Tendons in neck in...
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    Open The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)

    I think there is something potentially useful but it will depend on how this data is inteprerpreted and analysed. In our experience there are only some symptoms that seem to " count" medically. It's only on forums like this that symptoms are discussed and you realise how many there are and...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I am not aware of data . Two of my kids had pvfs after glandular fever : my daughter developed ME, my son didn't. Both had relatively mild glandular fever Although more acute, hospitalization lets you rest. It also perhaps encourages those around you to help so aiding recovery. Non...
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