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  1. Simbindi

    Urgent: Looking for a list of scientific papers for ME

    Thanks for asking that question - this is really useful information to have readily available.
  2. Simbindi

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    It's the insiduous way that IAPT is taking over that I worry about. It still seems to be expanding 'under the radar' as far as I can tell. It's only being on this forum that enabled me to see what's happening in this area. Where are all the ME charities on this? Not only is it GET type CBT, but...
  3. Simbindi

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Given the rollout of the IAPT Medically Unexplained Symtoms 'management services', with the CFS category using the Chaldler Fatigue Scale and giving all these patients a 'somatising' ICD code, if anyone is able (unfortunately beyond me with my current circumstances) it would be good to submit...
  4. Simbindi

    MUS services in UK and other MUS related issues

    There is a current discussion on this questionnaire on this thread: https://www.s4me.info/threads/bristol-cfs-me-clinic-researching-patients-problems-with-chalder-fatigue-questionnaire.10683/#post-196078 IAPT 'CFS' services must surely be an important consideration for the NICE guidelines...
  5. Simbindi

    MUS services in UK and other MUS related issues

    And the really worrying bit from the same Appendix:
  6. Simbindi

    The right to record medical consultations - UK and other countries

    Nice short (2 page) article that can be printed and handed to your GP if they seem uncomfortable about your request to record the consultantion or if they try to refuse it (UK based, but possibly applicable in other countries): https://www.bmj.com/content/bmj/364/bmj.l1101.full.pdf Edit: Or...
  7. Simbindi

    The right to record medical consultations - UK and other countries

    Merged thread I can't see an existing thread so am starting one to discuss a patient's right to record their medical consultations with GPs, Consultants and other health professionals. I thought many members may not be aware of their legal rights around this issue and that doing so may help...
  8. Simbindi

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

    I read the Boss ear pads wear out (not the actual headphones) but these can be replaced. I believe they are easy to find on Ebay.
  9. Simbindi

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

    I'll start a thread when I am able (soon hopefully). The lenses can be made up either with no prescription or with a prescription, then fitted to any standard eye glass frames by your own optician.
  10. Simbindi

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

    I see a paper that is a follow-on of this book/website has been discussed previously on the forum: https://www.s4me.info/threads/key-concepts-for-informed-health-choices-a-framework-for-helping-people-learn-how-to-assess-treatment-claims-and-make-informed-choices.2128/ In the paper they do...
  11. Simbindi

    Correcting medical records: Your rights

    Apologies too - I'm autistic, so not good at softening my responses with social niceties. I just didn't want members to be put off trying to challenge negative responses by GPs or hospital consultants/administrators.
  12. Simbindi

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    Long Term Conditions. Its the Medically Unexplained Symptoms which CFS/ME falls under, as well as things like Irritable Bowel Syndrome, Fibromyalgia etc.
  13. Simbindi

    Correcting medical records: Your rights

    Your post was written in 2017. I have posted the most up to date legislation (2018) and the link that provides information to whom and how to complain if your request is refused. It is up to individuals members if they wish to use this information and if they want to expend the necessary energy...
  14. Simbindi

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    Well, at least we have David Tuller on our side, thanks to the M.E. community! Sorry, that should be - at least we have a man called David Tuller on our side...
  15. Simbindi

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    But the MUS and LTC part is still being rolled out. Additionally, in the pilot areas many of the projects were quite different from the form it is going to take now. My CCG are actually putting off implementing it as long as they can, but it is being imposed on them from NHS England (I was...
  16. Simbindi

    Correcting medical records: Your rights

    There is a drive for GPs iin England to create a 'Summary Care Record' for all their patients. This can be shared with other care services outside the NHS. You do have the option to 'opt out' of having one or giving consent for sharing health information outside the NHS...
  17. Simbindi

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    I think the rollout of the IAPT Medically Unexplained Symptoms agenda is going to throw a lot more patients into our 'reality'. It will be interesting to watch how this unfolds with other patient groups. I wonder if they will start looking to us for some guidance in their 'brave new world'?
  18. Simbindi

    Correcting medical records: Your rights

    You can ask them to add your comments at the appropriate place in your records, e.g. that you disagree with the medical opinion and your reasons why.
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