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    A perspective on causation of the chronic fatigue syndrome by considering its nosology, 2019, White

    People would have died. That's the main difference that accounts for where we are. Not enough people have died with ME being on death certificate.
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    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    Illustrates perhaps why there is so little follow up . A follow up study of participants may be illuminating.
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    Activity baseline vs activity ceiling, why concepts and language matter

    I think the most forgotten " hole in the energy bucket" to borrow the Myhill phrase is the emotional one. It is so difficult to predict or plan for this and it can have huge effects. My severely ill aunt's s labrador is 13 and literally on her last legs. Everyone knows that the inevitable...
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    Fantastic redesign of hot water bottle for pain relief

    Saw this on Twitter Designed for menstrual cramp - brilliant for pain relief for so many conditions Hope it is mass manufactured soon https://news.engineering.utoronto.ca/this-ultra-thin-hot-water-bottle-could-help-ease-menstrual-pain/
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    Activity baseline vs activity ceiling, why concepts and language matter

    It's the concept of fatiguability that seems so hard for people to grasp Fatigue is not the most onorous nor annoying symptom and yet it is the most quoted / first symptom on a list. Why?
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    The PACE trial video series by A Broken Battery

    Brilliant again. Well done and thank you. Xx
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    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    Many different chip versions affect which Gene's are picked up. To be robust chip version may need defined?
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    Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al

    Sadly this is potentially evidence base for NICE. Similarly the n=1 account of intensive therapy for a teenage boy with severe ME which reads like torture. There is very little biomedical research for paediatric/ adolescents. A muscle study which Tymes Trust were involved with ( Dundee uni) ...
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    Does anyone else experience soreness in the back?

    Referred pain diagram may help. Also, given the recent metabolonic research , could maybe be due to.purines?
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    The PACE trial video series by A Broken Battery

    Perhaps one for Gigi would work - very simple, concise and no ambiguity.
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    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    The problem is that the methodology goes wider and affects many more conditions and careers. When it comes to eminence, the pace of change in UK is slower than a snail's .
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    Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

    I think.one of the most compelling pieces of advocacy was @Emsho ' s testimony at the Scottish parliament, particularly the part when she describes GET ( walking in and wheelchair out and being considered recovered) If someone has the technical skills to snip the video to this part as a reply...
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    Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

    Is the old boy network working overtime? Pinker was in uk recently ( he did appear on a TV panel show and was not particularly impressive) For a specialist in language nuances should really be better understood.
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    The PACE trial video series by A Broken Battery

    Great video. Will share widely . Thanks @Adam pwme
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    UK - The Young ME Sufferers (TYMES) Trust

    Oh to have been a fly on the wall at the safeguarding seminar earlier this year/ late last year. This may account for much as FII seems to have ramped up since. We touched upon it in a thread CFS was a designated subject , delivered by someone from Bath/ Bristol ( name escapes me - Rachel?)...
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