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  1. Simbindi

    Testing Treatments: Better Research for Better Healthcare - book endorsed by NIHR

    I was recently sent a free book from NIHR as a 'thank you' for the past work I had done for them as a patient rep. The book is entitled, 'Testing Treatments - Better Research for Better Healthcare' and is authored by Imogen Evans, Hazel Thornton, Iain Chalmers and Paul Glazziou. I haven't had...
  2. Simbindi

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    The article begins: Is this a fair and accurate comparison? What image is this comparison designed to invoke in the minds of the article's readers? Compare what Charles Shepherd says about there only ever being a tiny number of individuals accused of harrassment with the following Guardian...
  3. Simbindi

    ME/CFS NICE Guideline - Safety testing of GET in PACE trial

    A long, but very enlightening read on the subject of healthcare learning from the aviation industry's approach to improving safety: https://www.newstatesman.com/2014/05/how-mistakes-can-save-lives
  4. Simbindi

    Symptom frequency & development of a generic functional disorder symptom scale suitable for use in studies of patients w/IBS, FM and CFS, 2019, Hyland

    The lead author's work (Hyland) has been discussed on this thread: https://www.s4me.info/threads/body-reprogramming-patient-guide-for-recovery-using-the-hyland-model.8037/#post-142011
  5. Simbindi

    Fantastic redesign of hot water bottle for pain relief

    But it doesn't have a singing mouse like my hot water bottle cover!
  6. Simbindi

    Fantastic redesign of hot water bottle for pain relief

    Have you tried Sloggi? https://www.justsloggi.co.uk/sloggi-maxi-ladies The only brand that work for me (although I like the 'midi' versions). Also, they put the label on the outside with a single stitch so it can simply be unpicked, so they're great for those with skin sensitivities.
  7. Simbindi

    Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

    He's just using old school 'divide and conquer' tactics by implying there is the majority of nice, reasonable patients who want his help verses a minority of unreasonable, highly vocal and contentious ones, hell bent on stopping him providing his benevolent service - thereby damaging the...
  8. Simbindi

    Using PCs versus laptops when you're mostly in or on your bed

    I don't want to take the thread off topic, but I posted about this ergonomic chair in the 'Show and Tell' thread: https://www.posturite.co.uk/rh-logic-400-high-back-ergonomic-office-chair.html https://www.s4me.info/threads/show-and-tell-things-youve-made-baked-grown-etc.400/page-13 (post 249)...
  9. Simbindi

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    The answer to that is 'Yes'! Lots of autistic friends with extreme noise (and light) sensitivities use them outside and in urban areas. They all describe them as 'life changing'. Theire Boss headphones noticably decrease their social anxieties too. I have used my Beoplay ones on an airplane...
  10. Simbindi

    How can I persuade my dad to get a stairlift?

    Would it be worth getting your mum onboard applying for a Disabled Facilities Grant for their house to better meet your needs. This involves a council led OT assessment (the initial assessment is free). She could leave involving your dad until after having the OT assessment/report as there is no...
  11. Simbindi

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    You will probably need to try them for yourself. If you suffer from tinnitus they might make this more noticable (which is why I think mine improve my comfort levels if I listen to soft music on them). I tried my friend's Boss ones in his house and they immediately cut out all the background...
  12. Simbindi

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    See below for an explanation of how the technology works: https://electronics.howstuffworks.com/gadgets/audio-music/noise-canceling-headphone3.htm
  13. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    I'm just in the middle of watching a very distressing Panarama documentary on the crisis in Adult Social Care in Somerset (my Local Authority): https://www.bbc.co.uk/programmes/m0005jpf https://www.bbc.co.uk/programmes/m0005qqr
  14. Simbindi

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Most of my autistic friends use Bose noise cancelling headphones. They are possibly the best at reducing unwanted background noise. However, all the models are very big and bulky. I also have sensitivities to man-made materials, such as PVC/leather look vinyls. So a couple of years age I bought...
  15. Simbindi

    BMJ Archives of Diseases in Childhood: ''Editor’s note on correction to Crawley et al. (2018)'', 2019, Nick Brown. (SMILE LP Trial)

    I have previously worked in state secondary schools in the south west of England and my daughter is a secondary science teacher working in the state sector in Somerset. I know for at least the last decade it is standard practice to take an electronic register in every lesson, as well as morning...
  16. Simbindi

    Study finds psychiatric diagnosis to be ‘scientifically meaningless’

    Original research paper is available on Sci-hub: https://sci-hub.tw/https://www.sciencedirect.com/science/article/abs/pii/S0165178119309114?via%3Dihub
  17. Simbindi

    Study finds psychiatric diagnosis to be ‘scientifically meaningless’

    Many years ago* I found myself sitting in front of a CBT therapist - my first encounter with one (it was not M.E. related). I had asked my GP to refer me for counselling and thought that was what I was there for. At the time I was going through an extremely difficult divorce, facing homelessness...
  18. Simbindi

    Trial By Error: Some Thoughts on MUS and Bermingham; My Letter to Professor Payne

    This has mostly come about because of the Health and Social Care Act 2012. There was lots of opposition to it at the time, referring to it as 'the privatisation of the NHS'. For a quick insight see: https://en.wikipedia.org/wiki/Health_and_Social_Care_Act_2012 https://www.nhscc.org/ccgs/...
  19. Simbindi

    The IAPT Pathway for People with Long-term Physical Health Conditions and MUS. Full implementation guidance.

    I just randomly saw this last night so wanted to post a link to it without making any comment. However, on revisiting the site, it is notable that the list doesn't include 'Long term conditions', or the relevant links to the NICE guidance on, for example, diabetes, MS or Parkinsons.
  20. Simbindi

    The IAPT Pathway for People with Long-term Physical Health Conditions and MUS. Full implementation guidance.

    If you look up IAPT on the NICE website, CFS/ME is now formally shown under 'conditions managed by IAPT' (alongside clearly psychological conditions and also IBS): https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt
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