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  1. Sean

    HRA registered CFS studiesthat could be of interest

    Maybe, at least in part, because patients have learned the hard way that showing external signs of emotion, even if proportional and appropriate to the situation, is all too easily and commonly interpreted as evidence of psychopathology. Heads they win, tails we lose. Who would have thought...
  2. Sean

    Getting Glasses When You Have ME-related Variable Eyesight

    Currently trying my first varifocals (aka graded lens). Takes a little getting used to, and probably not for everybody, but nice to be able to focus on anything without swapping glasses! The main limitation so far is that they are not so great for sustained reading. I still prefer fixed focus...
  3. Sean

    Anyone get root canal (either before or after ME onset)?

    If it is still in good condition and repairable it is definitely worth it. Had 3 root canals (actually 4, one had to be redone several years later). Don't regret any of them. Didn't have it done on one molar that was causing trouble, left it too late, lost that tooth, and do regret it. That...
  4. Sean

    Tymes Trust - No reported harassment of staff at Bristol University

    And how can you challenge it if it is wrong? Wessely & co knew exactly what they were doing in running this scam from early on in the game. It has paid off very nicely in keeping their arses covered for 30 years. And be sacked.
  5. Sean

    Tymes Trust - No reported harassment of staff at Bristol University

    We have already have had a high level legal case that tested the harassment and intimidation claims, the FOI appeal by Matthees, and the tribunal completely and unanimously dismissed the claims as baseless. Far as I am aware, that is the highest level of legal ruling on the matter in the UK...
  6. Sean

    Tymes Trust - No reported harassment of staff at Bristol University

    Put up, or shut up. Or lawyer up for a defamation case. Should be the response.
  7. Sean

    Tymes Trust - No reported harassment of staff at Bristol University

    I do think it quite reasonable that, whenever they make the claim of harassment and intimidation, we ask quietly but firmly that they provide evidence for it. I don't approve of (actual) harassment or intimidation, for both ethical and practical political reasons. It does our cause no good at...
  8. Sean

    Tymes Trust - No reported harassment of staff at Bristol University

    Yep. I think Crawley and co are almost certainly bluffing. But be careful, we don't know for a fact what evidence they do hold that they have not yet put on the table. Personally, I think they would have tabled it by now. But you never know.
  9. Sean

    BMJ best practise

    In effect, it looks like two different documents that they have tried to blend into one but which clearly don't match well. Large chunks of it have what looks suspiciously like White's grubby fingerprints all over it. The BMJ are trying to have it both ways to save face. Bit late for that...
  10. Sean

    BMJ best practise

    I am slowly working through the full document, and sadly it is proving mixed and inconsistent. Still an important step forward, but also quite problematic. Three steps forward, two steps back, kind of thing. Might have more to say when I have got through it (if I can make it all the way, not...
  11. Sean

    BMJ best practise

    However, the prospect that CBT can change the illness beliefs of a patient, and that graded activity can reverse or cure CFS, is not supported by post-intervention outcome data.[157] Reference 157 is PACE. :D
  12. Sean

    BMJ best practise

    Good to see PEM being taken seriously.
  13. Sean

    Better Science through Better Data 25th October 2017 - Esther Crawley!

    I take that response as a good sign. People are openly calling out her bullshit in real time.
  14. Sean

    BMJ best practise

    "outmoded Oxford criteria" Now that is a win. :thumbsup: Is the excellent work by Tom Kindlon in his Harms Reporting paper [1], and by those posting formal critiques of the Cochrane review on exercise for CFS [2], among the references cited in that section? Asking as somebody without a full...
  15. Sean

    Useful gadgets that make life easier for MEcfs patients and carers

    Those invisible ones are obviously for white noise.
  16. Sean

    Useful gadgets that make life easier for MEcfs patients and carers

    Worth noting that you can get two different types of capsules, plain (non-coated) and enteric (coated). It matters because some medicines need to get past the stomach acid and into the intestine before they should be released. Otherwise their effectiveness is reduced by the acid. The enteric...
  17. Sean

    Useful gadgets that make life easier for MEcfs patients and carers

    I can. I am getting normal age related osteoarthritis in my hands, mainly my thumbs so far. Means I can't grab objects tightly for very long anymore. : unamused: So will be looking at things like electric tin openers in the not too distant future.
  18. Sean

    Useful gadgets that make life easier for MEcfs patients and carers

    Highly recommend a thick, good quality lambswool topper for your bed, and main chair if you want too. Not cheap, but worth every penny, much better than foam toppers, IMHO.
  19. Sean

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I ain't watching her. But did download a copy for the record. So she can't say she never said it.
  20. Sean

    ME Association review of Unrest in Parliament:..

    Thanks to MEA for organising this. The political climate in the UK might just be about right for this stuff to take hold.
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