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    UK: Priority Setting Partnership for ME/CFS

    It does rather seem that we're back to the fundamental problem - those deemed to be experts are those running clinics - bad and not so bad clinics -a large number of those don't believe that patients can be harmed by the treatments they offer and don't bother to look or check for harms. As...
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    Coronavirus - worldwide spread and control

    And if they feel well enough they may not bother to self isolate. Especially if there's an event they don't want to miss. Or they decide they want to "just" nip to the shops or something.
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    Coronavirus - worldwide spread and control

    A lovely idea, but sadly many people are just too short sighted and self centered to either do such a test or inconvenience themselves by staying away from others if it was positive. There have been self testing kits for drivers who who have had a drink. Still people either don't use em or...
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    Coronavirus - worldwide spread and control

    A friend living in Ireland was telling me that despite people testing positive for corona virus they still.plan to go ahead with the big St Patrick's Day parade in Dublin. Her local town, where there were confirmed cases, went ahead with a music festival over the weekend and the town was full...
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    Coronavirus - worldwide spread and control

    He's waiting for an app for that.... Edit - managed to mix.my text into quote.
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    Coronavirus - worldwide spread and control

    The ease and convenience of global travel probably does mean that no matter what we do sooner or later virtually everyone will be exposed. Even if you spend a lot of money stopping the spread and trying to contain it (within the UK), all it will take is a couple of tourists - ours going abroad...
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    Coronavirus: Advice from ME organisations

    I remember hearing something like this too. Not sure of the nationality though. I don't think they're terribly sure what happened there. Whether there was an issue with the test, whether she was reinfected with the same strain or whether it was a slightly mutated strain. It doesn't seem to be...
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    Coronavirus: Advice from ME organisations

    Not a snowball-in-hell's chance of getting him to remember I'm afraid. You can get stuff specifically for keyboards so I'm hoping maybe they'll have got some of that in. I've just been chatting to him about - apparently they had an office move so his desk & keyboard is shared with just one...
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    Coronavirus: Advice from ME organisations

    I was really hoping IM could work from home next week. Sometimes he can, but at the moment they still want people in to work. His commute to work is fine - he has to drive in anyway. They hot desk in the office though. So while.you can sanitize the desktop, it's harder to do with the...
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    Event: Mitochondria Day - by Biolab Medical Unit - Apr 24 2020

    I can't speak to the quality of the line up in this event but I have had some experience with Biolab. Admittedly it was almost 20 years ago. Two of the people I saw sent tests to Biolab. Both of them routinely sent test samples through to any labs they used. So they might send two samples...
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    Imaging Brain Mechanisms of Functional Somatic Syndromes: Potential as a Biomarker?, 2020, Kano et al

    A further thought - I wonder has it ever occurred to any of these navel gazers that there might be a good reason for the patient's inability to describe how they feel. It might be the sensations they are feeling are completely beyond their normal experience and so they don't have words for it...
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    FINE trial patient booklet 29/04/05 Pauline Powell

    Purely from my personal point of view - Except it isn't. Unless you are actually suffering from fatigue. I have never run a marathon. I have participated in 24 hour sports marathons with about a 2.5 mile walk there and another 2.5 miles back. I was a fit healthy teen. At the end I was...
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    Let’s talk about pain catastrophizing measures: an item content analysis (2020) by Crombez et al.

    Especially when there is no objective means of measurement of pain or fatigue or whatever. Then there's also no objective means of measuring worry or concern. It's like building a skyscraper with marshmallow for the foundations and whipped cream cement.
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    Coronavirus - worldwide spread and control

    Yep. There's a huge Tesco up the road from my brother's. He went to get his shopping yesterday and said there was absolutely no pasta left and almost no loo roll, though he saw a few people's trolley with umpteen rolls. So he reckoned he might as well join in the panic buying and filled his...
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    Coronavirus - worldwide spread and control

    I use warm soapy water with a soupçon of bleach on my kitchen surfaces and cloth. I shall carry on doing this until someone tells me this doesn't work or gives me a really good reason not too. Also for those of you with pets.... a reminder to be careful. My pooch is far too big to climb on...
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    Imaging Brain Mechanisms of Functional Somatic Syndromes: Potential as a Biomarker?, 2020, Kano et al

    I have a feeling. I have a feeling this is a heap of sh*te. Edit - to be clear the research not Sly Saint's post!
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    FINE trial patient booklet 29/04/05 Pauline Powell

    Exactly. That lack of effort to distinguish between patients who might benefit and those who do not demonstrates the cavalier attitude to the potential for harm to be caused. Also, unless I'm mistaken, drugs trials not only look at harms but at responders vs non responders and this analysis...
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    Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal

    The problem is many people don't spot them until it's too late and the system colludes with them to keep it that way. So many of us diagnosed since the "yuppie flu" headlines would have simply believed that narrative, desperate to get better and relieved there was nothing "serious" wrong with...
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