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    UK House of Lords/ House of Commons - relevant people and questions

    Great. I know @MeSci wrote to her before explaining the issues and got the brush off. As she's taking an interest maybe we should invite her here to discuss the issues? Edit - that "Great" was sarcastic by the way. More clinics at best not helping much at worst permanently harming people is...
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    Coronavirus - worldwide spread and control

    Unbelievable. Just saw a snippet on Sky News - a dr is asked about what disabled people who rely on carers should/could do if people are isolated and stay at home. He says - well, of course this is where teleconsultations will help. You'll be able to see your GP that way. Riiight. How does...
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    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    I struggle with watching video clips, but.managed Chris Ponting's on GWAS - very interesting. I also watched Sam Bromiley's. It made me a bit twitchy. AfME highlight the lack of access to specialist services. Given the offerings available, especially the lack of guarantee whether you'll get...
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    From IBS to ME – The dysbiotic march hypothesis, 2020, Berstad

    Another issue that strikes me about gut issues is that for some people gut issues may make them more susceptible to illness which could trigger ME, but for others ME may be affecting their gut. The other issue is that we don't know very much about the enteric nervous system. Some ME patients...
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    From IBS to ME – The dysbiotic march hypothesis, 2020, Berstad

    That's a fair point and I am sure, for some, solutions in the gut could be found. Not necessarily for everyone though. A lot of the seemingly new advice I 've seen recently are things I spent a lot of time, energy and money on 20 years ago. At one point they and I were convinced that if they...
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    Coronavirus: Advice from ME organisations

    It's a difficult balance. We don't know what difference having ME will make if we become infected. Versus If we're turning away help that means we'll be exceeding PEM thresholds in order to survive then we'll certainly be affected. I am avoiding all unnecessary contact now. I don't have a...
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    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    Sorry I don't want to derail the thread so I'll say this then shut up..... I am sceptical and believe it will be a case of garbage in/garbage out. It's simply too common a symptom and fatigue itself isn't clearly defined enough. If it was simply research into fatigue to try to establish what...
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    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    I see what you're saying, I think, @Andy. You already know my feelings on the F word, but if I were to say I felt fatigued it would very much be as a secondary issue. So my function declines, cognitive and physical symptoms arise and I increase effort and then fatigue would start. So for me...
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    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    The issue I have with that is the assumption all fatigue is the same. I don't believe that's the case. We might not even be comparing apples with oranges, but with a veg instead of another fruit. Then there's the question of whether it makes a difference whether or not fatigue is a primary or...
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    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    Creation of evidence across the diff domains to influence clinical practice and treatments is critical.... No. We've had enough "creation" of evidence thank you. Finding evidence is an entirely different matter. Now, can we focus on looking for it please Prof H?
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    UK: Priority Setting Partnership for ME/CFS

    Yeah.... On the one hand if we don't participate our voices & opinions won't be heard and it also feeds into the patients being anti research meme. On the other we don't want to be used to add authority to something that we don't agree with and otherwise put our names too. However, anyone can...
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    Question: Coronavirus & home sewn masks?

    One of the issues I can think of with cloth masks is the size of the gaps or holes between the weave, if you know what I mean. Professional (commercial?) masks have a grading which block particles of a certain size - a lot smaller than the holes in normal woven material. Even if you were to...
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    Coronavirus - worldwide spread and control

    And a brief look on the brighter side..... A lady on my local Nextdoor forum posted she is fit and healthy and prepared to assist those who are elderly or unwell and who need some extra support be it shopping or dog walking or whatever. Now our local group and the next village along are...
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    Coronavirus - worldwide spread and control

    This lunacy of it only effects older or people with underlying health conditions is absurd. Both those groups make up a significant number of our workforce. Many younger and supposedly less vulnerable people may have older or ill friends and relatives. They may not realize that some people...
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    Coronavirus - worldwide spread and control

    I agree the limitations on testing and the advice isn't great. However those criteria for testing might have been so narrow because they wanted the test for those most likely to have been exposed as there weren't enough to go around. hopefully with tests becoming more freely available things...
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    Cooking with Corona - coping with power cuts

    Still too long without warning, or any information being given I think and worthy of a complaint.
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    Cooking with Corona - coping with power cuts

    That is grounds for a complaint to the water company. 24 hours without water and no warning isn't accept for lots of people including those with young children as well as the housebound, elderly and vulnerable.
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    Cooking with Corona - coping with power cuts

    Sorry, what is istm? I appreciate we all need to be concerned and to protect ourselves and the most significant risk factor is people being silly by trying to ignore it and spreading it by being idiots. However - the utility companies and providers will all have scaleable disaster plans in...
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    Serious Gaming [...] for PW Chronic Pain or Fatigue Symptoms: Mixed Methods Design of a Realist Process Evaluation (2020) Vrijhoef et al.

    There was always the annual local Christmas get together in the little community where I grew up. It always had a massive poker game going on with people dropping in and out. The players were serious but the stakes were small. The quantities of alcohol consumed meant no one was feeling any...
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    Cooking with Corona - coping with power cuts

    I think a lot of people only drink bottled water and only fill the kettle with tap water so I'm not sure I'd pay any heed of that. Unless you're unlucky and there's a storm or something then I'm not sure there is much increased risk of power outages. Also I'm sure the folks.who look after...
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