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  1. TiredSam

    UK Action for ME - policies, actions and publications - discussion thread

    That was AfME in the past, and they were unresponsive to any attempts at dialogue. I don't. Whilst there is a lot of scope for people to take their own approach, some things are still true or not true, right or wrong. Some things are abusive and harmful, and the fact that some organisations or...
  2. TiredSam

    UK Action for ME - policies, actions and publications - discussion thread

    Those who have valid concerns about AfME should be able to express them. AfME have an absolutely appalling history, and still have a way to go on some fronts. The fact that they have made some progress and we can now co-operate with them on some matters does not mean that concerns should no...
  3. TiredSam

    Yet another NHS reform !

    I'm not sure it's politics, I noticed the same when I was teaching in multi-national corporations. My students would tell me (and I was there long enough to see it for myself) - every 2-5 years there'd be a new concept and a reorganisation, trumpeted with enthusiasm by those who introduced it...
  4. TiredSam

    United Kingdom: Action for ME (AfME) news

    That seems to be exactly what happened when someone had a go at this in 2018, resulting in a "no further action" letter from the Commission: https://memanchester.wordpress.com/afmecomplaint/
  5. TiredSam

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    It really is a thing. Here's a burlesque dancer with plans for a modelling career and a link to her facebook page at the end of the article: https://www.mirror.co.uk/news/real-life-stories/couldnt-out-bed-eight-months-6438056 Here's a former "party girl and burlesque dancer [another one!] with...
  6. TiredSam

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    Miss X usually had something to sell, by the time you reached the bottom of those articles there was always a modelling agency to contact or a fund to donate to or a book to buy or a course to go on.
  7. TiredSam

    Covid-19 vaccination experiences

    Hopefully they've got a system in place to stop people turning up to be vaccinated for the 10th time. All sorts of scams possible.
  8. TiredSam

    [Blog] Beyond the NICE guideline: MEComms© and the case for a public inquiry

    Judicial Review Bill being introduced to parliament today...
  9. TiredSam

    Bridget Mildon - patient advocate for Functional Neurological Disorders

    Did she happen to improve whilst she was going through it? (I should know that, but I can't bring myself to read it, sorry). I think the attraction of this kind of stuff is that you get to adopt a new vocabulary, complicated explanations, be privy to a body of knowledge, and preach the gospel...
  10. TiredSam

    Voices of Recovery website (Lightning Process promotion)

    It wouldn't surprise me if joining Voices of Recovery and writing something positive became a condition of doing an LP course, or part of the process to show your commitment and not incur the wrath and public humiliation of the trainer. So seen from that perspective (and I think it's a fair...
  11. TiredSam

    CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric [CFS], 2021, Anderson, Parker et al

    From the website: That really isn't how time management works. In fact "Do it now!" the cause of the problem - Are you getting overwhelmed by the feeling that you have to do everything now? You can't do it all now, stop feeling you have to, get organised instead. Try a time management course...
  12. TiredSam

    Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

    And another thing ... this probably isn't going to be the last pandemic or the worst one, so they'd better pull their finger out before the next virus comes along, or they'll have millions of long covid sufferers saying "Well if you'd taken us seriously at the time, you wouldn't be in this mess."
  13. TiredSam

    Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

    Well I've just watched the panorama program. Galling in the extreme to hear patients and experts unanimously calling it a new illness. The virus guy will be surprised if most people don't recover within a couple of years (based on what he knows about other post viral conditions), and expects to...
  14. TiredSam

    Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

    :rofl: I'm pinching that remark and shall be passing it off as my own often.
  15. TiredSam

    Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Froehlich, Jason et al

    She obviously thought you'd try hard enough to phone her. Maybe you could have proven her right by not trying? The answer to that is that it's not just work, PWME also don't try hard enough to have hobbies or a social life or do anything they used to enjoy. As getting-out-of-work scams go...
  16. TiredSam

    Science magazine, Landmark research integrity survey finds questionable practices are surprisingly common, 2021

    Perhaps because they're sick of a system that they feel pressures them into behaving like that if they want to get on?
  17. TiredSam

    New Documentary "Living with Chronic Fatigue Syndrome"

    Chronic Fatigue Syndrome is what it is known as in Germany. That's what's on my diagnosis from the Charite. M.E. is barely used by anybody.
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