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    Ask Dr Ellie Cannon recommends GET - Mail on Sunday

    Where would a GP/ medic look for advice - NHS guidance. Is this really surprising?
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    News from Scandinavia

    Thank you @Kalliope for this info. This is exactly the kind of approach th Educate ME project that AfME and parents are working on is trying to do. We are trying to develop a toolbox of info and links to initially target guidance and head of year teachers. Here,bsadly, safeguarding is initiated...
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    Children with ME, schools and the problems of FII diagnosis

    @mariovitali - perhaps you could share insights re liver with @Tilly
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    David Tuller: Trial By Error: So What's Happening with the MAGENTA Trial?

    https://itunes.apple.com/gb/app/activeme/id458308805?mt=8
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    The use of monitoring devices such as actometers to measure outcomes in clinical trials. Discussion thread

    https://itunes.apple.com/gb/app/activeme/id458308805?mt=8
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    David Tuller: Trial By Error: So What's Happening with the MAGENTA Trial?

    Not much use ehen it is only for exercise. I have a weird memory that the App had been dropped. ( This could be a false memory from lack of sleep )
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    The use of monitoring devices such as actometers to measure outcomes in clinical trials. Discussion thread

    Not much use ehen it is only for exercise. I have a weird memory that the App had been dropped. ( This could be a false memory from lack of sleep )
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    The use of monitoring devices such as actometers to measure outcomes in clinical trials. Discussion thread

    If there was a real time phone app that you could simply hit a coloured symbol as you go through the day, that may make more sense of things . The number if apps that are free / peanuts would duggest that it may not be difficult to get a tailor made one for trials.
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    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    Were these home visits ? If you can' t get out of your bed/ house then I' m assuming that they were. If otherwise, it seems simply set up to fail. Or was proving how difficult things are basically the point? Edit - added last sentence
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    Children with ME, schools and the problems of FII diagnosis

    Can you have an advocate attend with you @Tilly? Could Tymes Trust/ ME Action/ 25%Group/Action for ME provide someone who actually knows what they are talking about to support you? It is a hard tightrope to walk. @Action for M.E. ,@Russell Fleming
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    The use of monitoring devices such as actometers to measure outcomes in clinical trials. Discussion thread

    Unless you fill in a chart as you do things, it can be difficult to remember what you did and for how long. Then you are prone to making it up. Was there not a phone activity app?
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    UK CMRC 2018 Conference held September 19 & 20 at Bristol

    Last year was my first year of watching. Entertaining to see Dr Rowe' s take on paediatric ME and comirbid conditions. Interestingly, from memory E Crawley' s presentation was the only that was not made available online ?
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    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    My son had post viral fatigue. Our GP now thinks it was CFS/ ME.After 6 months he was very ill. Severe migraines prompted lumbar puncture as it was thought it was a potential brain bleed. Yet he never had PEM.
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    Children with ME, schools and the problems of FII diagnosis

    I can empathize with your situation, though 2 years since diagnosis. Medical history of lots of small issues suggesting something amiss with immune system prior to glandular fever. But no immunology referral possible. We are now " heart sink " patients, though GPs and consultants are generally...
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    Bristol - New Network - Prof Munafo

    The question is what effect will it have? Will this be just another example of concerns raised by PWME being given no more than lip service as it is they who have raised them? Can this be made wider ?
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    Ronald W. Davis, PhD's presentation at the IIMEC13

    Re the autism expression overlap. Theory in tweet link is on combinations of mutations, not just one https://www.medicalnewstoday.com/articles/amp/323035?__twitter_impression=true
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    Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018

    Thank you to @Brian Hughes for tweeting Link to thread
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    Ketogenic diet

    Sadly much harder without dairy .
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