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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Wow, interesting. I thought there would be more strategic dallying. Or more strategic a reply. And we'd all have to wait to see what came back. And it would be a less direct answer of 'who they are' (based on how they handle things). But then I guess the only information it confirms is 'that...
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    ‘Electrifying’ book about women with disabilities sells for six figures - Frances Ryan book

    yes the knock-on effect is very much needed. In pop culture too. I’ve watched a few ‘medical’ soap opera type things over recent years and to say they are tropes us an understatement. I’m quite shocked for example if you look at Chicago med. almost every episode some woman with a mind-caused...
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    Low dose Naltrexone - How might it work biologically in ME/CFS?

    I was thinking along same lines of looking up Narcan and seeing what it actually does: undoes the effects of opioids not necessarily eg getting rid of the opiods. But the focus seems to be e.g. breathing, it doesn’t work on overdose with eg alcohol or other drugs. And isn't long-lasting ie 30-90...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I was initially thinking that ensuring the timescale that/length of wait Cochrane take to find an independent process to deal with complaints is made transparent is useful at this stage just in case. How organisations are capable of dealing with these things appropriately and their ability to...
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    Brain fog, cognitive dysfunction

    Agreed on this one. Here's a simple 'experiment': when already not a 'good day' (but not bad as I'd got out of the house) I had to be taken to an appointment in the car. There were lots of road works meaning uneven surfaces lots of swinging round and stopping because of one side of road closed...
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    Talking therapies linked with reduced risk of cardiovascular disease

    I wish, these things seem to get pushed in through the GP pathways with claims of 'the never never' being reduced. Based on the fact that people who were less ill and had a working situation where they were more able to attend regular sessions of anything - it could have been balloon animals...
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    Long Covid is being erased —again—Ed Yong

    Yep. I've used that one (mirror) as well as it being like x-ray glasses for seeing who people are when they know you have ME/CFS. And I have come to start realising that the word I've been searching for is 'callous' ironically in the last week too when trying to put my finger on what the...
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    Long Covid is being erased —again—Ed Yong

    This is familiar. And speaks to how for e.g. ME/CFS unbelievably the disability itself is absolutely huge, but somehow society has managed to find a way to create an even bigger disability it has loaded onto these people. SO big that those with this incredible disability feel better-off damaging...
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    Long Covid is being erased —again—Ed Yong

    Yes please to calling them out. And having names for them and terms for what they are doing. This is an important line that we should be able to use about each and every person using faux ideologies and one-liners across the various aspects of LC and ME: whether it is weaponising mental health...
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    skin rashes, itchy skin

    Agreed, and indeed a dermatologist has pointed me to this too
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    skin rashes, itchy skin

    Sadly that is not at all how it works for those in the UK who are under bad GPs. I can completely understand the caution. I had something that eventually resulted in a 'dermatological emergency' and a letter back to GP noting between the lines how wrong they had got me (changed noting in their...
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    Effects of sleep disturbance on dyspnoea and impaired lung function following hospital admission due to COVID-19 in the UK: 2023 authors incl. Chalder

    Where on earth did they get that idea from 'in theory'? Well yes if you made it inaccessible to them - and I don't see how that can still be allowed to be a pat statement where noone made any attempt to see what might be possible there. Did they look at whether what they were offering would...
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    The biopsychosocial model: Its use and abuse 2023 Roberts

    This is the section where I start to disagree with this article. I would say, and have always thought quite the opposite. Without seeking to thoroughly investigate the potential pathways in their entireity e.g. by looking at all factors (not just the 'fear and thinking' ones that are often...
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    The biopsychosocial model: Its use and abuse 2023 Roberts

    It is a rhetorical device. But one which is like catnip to silly laypersons who are half-listening or tend to summarise-listen where they basically don't listen and then just wait for the one sentence they half-understand whilst they are thinking of what they are going to say. Like someone...
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    Brain Images Just Got 64 Million Times Sharper

    Ohh I like this. What I'm trying to work out is whether it can actually effectively being to look at neurons, even though it gives the impression it might sort of a bit more using the workaround: On the top of head thinking about ME stuff though of course the issue is an analogy I've seen said...
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    United Kingdom: Kings College London; South London and Maudsley NHS Trust

    This may be a repeat but basically for university fees there is a Dec deadline after a student enrols end set/early oct by which if they are still enrolled the whole fee is due ie the whole year's fees have been triggered. I’m sort of angling at things like this which would certainly inform any...
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    Crowdfunding: Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023

    :rofl::rofl: I think that’s one ready rolled sausage-machine retort to Paul garner lined up there for anyone using social media! Of course I can almost see the meme too. the ‘expectation effect’ in genius action agsin hey
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    STAT News: In counties with more Black doctors, Black people live longer, ‘astonishing’ study finds

    well of course that process is another source. women like them might find themselves (other female and male doctors) incredibly well served Scraping out anyone who’s had misfortune health wise systematically through the med school app and the training process means it isn’t either a...
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    Long Covid Advocacy: Is the “greatest medical scandal of the last century" being repeated for a generation of children? (about the CLoCK study)

    At least I can now be reassured it’s reading and living under their crap that is responsible for this reasonable and accurate reaction and one doesn’t have to actually have ME to get it. It’s shocking isn’t it that these grubby/grabby(?) people crawl around collecting funding like some dirty...
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    Long Covid Advocacy: Is the “greatest medical scandal of the last century" being repeated for a generation of children? (about the CLoCK study)

    Yep on that crap harmful questionnaire stuff, and I’d add a not unreasonable addition: ‘and apologise and admit your inappropriateness’ there is enough in the social psychology schools even if this weird are this lot sit under pretend it doesn’t exist to suggest such things are just ethically...
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