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    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    This has been a sad yet hopeful thread for me, and reinforces the lack of general medical knowledge. It' s clear from the posts that my daughter in fact had a relapse in Nov- Dec 2016 after having a diagnosis in September of that year from the paediatrician. We had been given sheets on...
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    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    For my daughter PEM kicks in significantly at 48-72 hours. Next day is " tired and sore" PEM is being confined to bed with every muscle aching, headache, flu symptoms, swollen glands, more brain fog than usual and no appetite ( and no energy to eat). Just coming out of such an episode after...
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    Format of NICE stakeholder meeting?

    There is not a lot of robust evidence of it being effective for much
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    Format of NICE stakeholder meeting?

    If the international paediatric primer could be used as an official resource this would be a step forward - whilst consensus documents are a compromise , this is better one, and is wholly different from the UK one. The removal of GET and CBT for paediatrics too, would be valuable for those that...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    The problem with highlighting harm is that parents are unlikely to complain until their child is out of the paediatric system; such is the fear. EC does not believe that severe ME in children exists. She also did not believe POTS to be a potential comorbid condition and no doubt would have been...
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    If you have not already looked at it, then this analysis may provide a hint for a clue http://www.meassociation.org.uk/2017/09/dr-mark-vink-and-dr-simin-ghatineh-review-the-dutch-and-uk-fitnet-trials-for-cbt-in-adolescent-mecfs-04-september-2017/ Teenagers are very good at telling people what...
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    What are the 'missing' research papers based on existing data that we wish scientists would write about ME/CFS?

    From the bits and pieces i have picked up from here and the other place there seem to have been a significant number of studies , many from 1980s and 2 1990s which have been " forgotten about". ( Eg blood cell shape, colour and stickiness, Behan' s ANT theory). Given the rate of technological...
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    Format of NICE stakeholder meeting?

    Good points. I would appreciate if paediatric issues could also be raised if possible. The "Karina" experience is alive and well in the UK Social services involvement subsequent to school attendance issues also continues to instigate stress, fear and exacerbation of illness symptoms to...
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    3 Dec 2017 | Interview with Nancy Klimas on 'Unrest'

    Oh to be able to access such testing. ......
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    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Online CBT is more effective simply because you don' t have to expend energy getting up, dressing, travelling, having a session and going home ( not to mention the extended emotional energy worrying beforehand) it' s not really related to cbt per se. You can see this in the Dutch study where...
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    Breathlessness and air hunger in ME/CFS

    Thanks @Iansbergen. I had thought it might be related to swollen lymph nodes/ glands as she has these virtually all the time ( and there are some in lungs)?
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    Researcher Interactions Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread

    My aunt had 2 occupations with chemical exposure Hairdressing in 1960s - early 1970s ( dyes etc) Floristry 1970s to 2010 - widespread pesticides I think this background affected liver and immune functions. She did seem to be more prone to infections and take longer to get over them. She now has...
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    School sends home sick asthmatic 5y/o, then bans him from Xmas party for ‘poor attendance’

    Attendance is reinforced like this because it is one of the parameters schools are " judged" on. It is a trigger for social services involvement too.
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    [Not important] 2010 SMILE correspondance between Crawley and REC now seems to be off-line at Bistol Uni

    I am a little dumbfouded by this. From a research team who have conducted the volume of research with children that they have, i would not have expected these kinds of questions to be raised? Ethics are clearly an issue. Is this just me?
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    What blood tests would you get?

    Thanks for this succinct explanation. This is one of my daughter's more frequent symptoms which would perhaps indicate immune system issues?
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    What blood tests would you get?

    would this also account for seemingly perpetually swollen lymph glands?
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