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    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Given the nuances with language deployed by PACE team, and their carefulness to be economic with the truth but not lie, I could believe they didn' t see their data prior to changing outcomes. They didn' t need to. FINE data was available and would have flagged up issues. They could not afford...
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    United Kingdom - Suffolk and North East Essex ME/CFS services

    @Suffolkres Brilliant resource. Easy to read, graphics give " at a glance" info I think every practice should have a copy.
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    A new approach to find biomarkers in (CFS/ME) by single-cell Raman micro-spectroscopy, 2018, Morten et al

    Apologies if already posted elsewhere. I couldn' t rip the video at the end of this thread. Gordon Broderick succinctly in layman' s terms explaining Klimas' research and highlighting phenylalanine...
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    Action for M.E. Walk with M.E. 2019

    Really?
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    Protecting the Value of Medical Science in the Age of Social Media and “Fake News”

    How could anyone forget coffee? :)
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    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    Knowing other mums who have been threatened with / through such processes, thank you @Tilly for all you do. Linking to another topic re male/ female differences in advocacy this is a strange area in that FII seems to be targeted at females . Must be those hysterical tendencies, but perhaps...
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    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    Thanks @Tilly I suspected a tranche of papers starting at end of last year onwards to retain and reinforce narrative/ control/ reputations. These need to be dissected and appropriately critiqued by science and charities Where are @Action for M.E. and MEA @Russell Fleming and ME Action @EspeMor...
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    David Tuller: Trial By Error: More Thoughts on the Interferon Study

    IAPT ...££££
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    David Tuller: Trial By Error: More Thoughts on the Interferon Study

    How can it support a hypothesis for CFS when the study was on Hep C patients ?
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    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Perhaps he should be commanding the great ship Brexit too ....
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    ME Association Website Survey: What are the most important things a GP needs to know about M.E.? | 08 January 2019

    It took nearly 12 months for my aunt to get a home visit. The GP told her that there was nothing she could do and had to be pushed to agree to blood testing . Even with a practice copy of purple book, no sleep/ pain meds offered, no symptom discussion to screen for comorbidities. If there is no...
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    Frontiers in Pediatrics special issue on ME/CFS

    From an initial glance this may be a very useful issue to provide to our GP, consultant ( pretty useless) and for advocacy use.
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    Action for M.E. hosts DWP spotlight training

    Is GET not an ongoing 10% incremental increase ( ie not just 10% max)?
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    Hair Analysis

    Hair testing , i am told used to be used to assess calcium levels in heart conditions pre CAC scan. ( Chemistry professor) A chemistry lecturer i had a discussion with was of the opinion that they had some use, however it is interpretation that may be a bigger issue. His background pre...
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    School Functioning in Adolescents With Chronic Fatigue Syndrome, 2018, Knight et al

    Schools, in our exoerience, simply can' t cope with prolonged part time attendance. Part time attendance is (usually) geared towards a return to full time attendance . A combination of virtual learning and school attendance could offer the best of both worlds, however it is seldom available...
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    Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)

    Magnesium is the one supplement we have that is noticed if a dose is missed. My understanding is that the body works hard to keep a consistent % in the blood, but like many elements, most is in tissues etc. ATP needs magnesium bound to it to work . The ATP profiles test done for my daughter...
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    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Yes, i would agree with these points. My understanding is that the relevant research literature for NICE review is being selected via abstracts only. From some recent papers, the limitations can only be judged by reading the full paper, as it is there that the gaps in data/ bias/ consideration...
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    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    We are being drawn into the hype. It is not about ME. It is not new news. That' s what should be being highlighted. It' s about fatigue in a specific circumstance. The 2 important points that could be worth promoting is that Fatigue can persist without a biomarker There is no psychological...
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    Action for ME: Our new years resolutions

    Yes, i would agree. Sadly when web design is bundled, everyone can be a graphic designer. The Afme graphic dosn' t know whether it should be pictures or words and the compromise is not thought through.It may be part of a larger document, and in that context make more sense, but as a standalone...
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    BMJ - Pledges for the new year (open science and involvement of patients)

    I am in danger of falling off my seat trying to stifle laughter. If this is a serious proposal then it could be a gamechanger
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