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    RCPCH conference 2019 abstract: When symptoms dictate a young person’s life..., Gamper et al.

    This
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    I recall a previous thread touching on what looks like the same child. Is this a different paper? This is 2nd one from UCH . Timing is everything.
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    RCPCH conference 2019 abstract: Characterisation of population... service provision... outcomes for young people with CFS in... inpatient.. Doukrou...

    UCH has been mentioned previously, I can't remember if it was they who had the awful treatment pathway poster, but I can remember mixed experiences on forums . @Tilly
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    Gary Burgess - The ME show, and updates about Gary's health.

    Sorry to hear this @Gary Burgess . Thinking of you and sending you good wishes for you and yours. Take care of yourself.
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    Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

    Yep, they out something in it so that you know there is a leak. So what do they add?
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    Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique -Antcliff, Keenan et al Nov 2019

    Thank you
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    do we know the male/ female split in this? has the analysis been done separately re male/ females given that we know there are differences in metabolism and expression (and the one non heriditary gene found by Chris Ponting was females only) could this be relevant?
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    Podcast: CBT for Chronic Fatigue Syndrome: Dr Lucy Maddox, Trudie Chalder

    This is the kind of thing that would be good if charities commented to kick into touch. When this kind of information goes unchallenged nothing changes. @Russell Fleming @Action for M.E. @phil_in_bristol
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    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    Seems like some similar issues to the paediatric survey. Perhaps in future those whom the survey is aimed at could advise re a range of formats for information capture. Sadly a one size fits all doesn't t work
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    Babesia, babesiosis (tick-borne disease)

    New tick found in north east Scotland From Twitter - new trick in Scotland, never found in sheep.previously babesia venatorum https://www.northern-scot.co.uk/news/global-scientific-first-as-parasite-found-in-north-east-sheep-186588/ @duncan @chrisb
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    Correction: CFS/ME is different in children compared to in adults: a study of UK and Dutch clinical cohorts. 2019

    Given EC conflates chronic fatigue and PVF with ME it is little wonder that children are not ill as long as adults. There is also the statistical gem , if I can remember correctly, that in paediatrics 80% recover naturally and 80% recover as a result of specialist input. ( I could be wrong...
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    Action for ME: GP home visits under threat

    After months of cajoling my aunt got a home visit from her GP last year. She was basically told that there was nothing the GP could do ( and the GP did not have a clue, nor had they tried to do background research). It left her dejected and slightly bitter ( she is not a bitter person). It was...
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    The unifying diagnostic construct of bodily distress syndrome (BDS) was confirmed in the general population, 2019, Fink et al

    Thank you
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    Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue, 2019, Antcliff et al

    Do we know how much ME knowledge the exercise specialists at Nottingham (? Currently got funding for ME related research) have and whether they would be in a position to provide a quote?
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    The unifying diagnostic construct of bodily distress syndrome (BDS) was confirmed in the general population, 2019, Fink et al

    Sadly i feel that this may only feed into the confusion with BDD. It is far from harmless.
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    Berberine protects against diabetic kidney disease via promoting PGC‐1α‐regulated mitochondrial energy homeostasis, 2019, Qin et al

    Berberine is expensive - recently recommended a berberine and grapefruit supplement by nutritional therapist to deal with fat digestion and bile issues. Can't find any cheaper than £65/ tub or smaller tubs.
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    Review: An Association of Serotonin with Pain Disorders and Its Modulation by Estrogens, 2019, Paredes et al

    I think it's not the absolute but relative levels that are important. The ratios between eg progesterone and estrogen rather than absolute levels seem to be important in pre menopausal women.
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    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    Validation, validation, validation. Seems to be the academic equivalent of estate agent's location location, location...
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    Unidentified (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics, 2011, Crawley et al

    Service evaluation... Who is pulling strings? This will be very embarrassing when the saga of the emporer' s new clothes finally hits home.
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    S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

    So once again no prominent notice next to very questionable science. What happened to " first do no harm" ( again)
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