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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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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    Has the role of NO linked gene expression been considered relative to instigatng bistability in IDO1/ IDO2 pathways? My understanding is that NO inhibits IDO activity by preventing oxidixation of TRP Is this a link to the sepsis similarities?
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    interesting link to roles and mechanisms of IDO 1 , IDO2 and TDO https://pubs.rsc.org/en/content/articlelanding/2017/mt/c7mt00105c#!divAbstract
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I hope I have not mislead/ confused. I don't t know if Craig Robertson has pitched this molecularly. It simply strikes me as an explanation for the relapse and remitting aspect and the similarities re catastrophe/ instability are striking, even to a non mathematician. Interestingly similar...
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    Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa

    Sort of like inverse obesity with grehlin and leptin signalling gone awry?
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    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Does " Montgomery v north lanarkshire" ruling apply to physios ? The physio we saw was completely uninformed re ME, conflated with chronic fatigue, no knowledge of use of hear monitors, oi issues, what PEM actually is. When is lack of knowledge a defence when there is so much info outside their...
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    Use of trackers for Parkinson’s patients

    Microchips for alzheimer's- interact with heating system and avoid use of manual controls to provide suitable temperature - this has already been proposed (!) ( my cousins daughter has her art masters portfolio on a microchip in her hand - her theme was cybernetics) Smart meter data has...
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