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  1. Binkie4
    Post

    Informed Consent

    Thank you for that clarification @Valerie Eliot Smith
    Post by: Binkie4, Sep 1, 2021 in forum: General Advocacy Discussions
  2. Binkie4
    Post

    2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

    Thank you for your dedication and hard work in producing such a well thought out letter.
    Post by: Binkie4, Aug 31, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  3. Binkie4
    Post

    Guardian Article on NICE pause

    [ATTACH]
    Post by: Binkie4, Aug 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  4. Binkie4
    Post

    Guardian Article on NICE pause

    Headline in hard copy much better. ME guidance ( in red) 250,000 patients in limbo as Nice delays advice. edit: no mention of Chalder. Sources-...
    Post by: Binkie4, Aug 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  5. Binkie4
    Post

    Covid-19 vaccines and vaccinations

    Just announced in the Telegraph - booster jabs delayed to await results of a 'major clinical trial'...
    Post by: Binkie4, Aug 28, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  6. Binkie4
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    @Andy @Gecko Mr B has just had a report from a friend who signed the petition. After he signed it, there was a link directing him to another...
    Post by: Binkie4, Aug 27, 2021 in forum: Petitions
  7. Binkie4
    Post

    Petition: Don't let vested interests perpetuate harmful treatments for ME/CFS!

    2930
    Post by: Binkie4, Aug 18, 2021 in forum: Petitions
  8. Binkie4
    Post

    The biology of coronavirus COVID-19 - including research and treatments

    https://www.nejm.org/doi/full/10.1056/NEJMoa2108891?fbclid=IwAR3net26w_EXaSafMD1jBeG30g3VkmK9MIJZLUC88vU90eMiBuUW5P4Oytg Vaccine efficacy against...
    Post by: Binkie4, Aug 17, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  9. Binkie4
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Some specialist centres ( eg the one I formerly attended about 10/11 years ago) are now headed by a psychiatrist. I cannot see that this is...
    Post by: Binkie4, Aug 12, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  10. Binkie4
    Post

    The biology of coronavirus COVID-19 - including research and treatments

    Does anyone know when Novavax plans to apply for approval in UK? Will it be in time for autumn boosters? Has UK bought any Novavax?
    Post by: Binkie4, Aug 11, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  11. Binkie4
    Post

    Covid-19 vaccination experiences

    Attached link discusses some of the issues around immunodeficiency and taking the vaccine....
    Post by: Binkie4, Aug 7, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  12. Binkie4
    Post

    Covid-19 vaccination experiences

    The tweets I read didn't say but I don't think I had access to the whole thread. I have appreciated those with ME sharing their response because I...
    Post by: Binkie4, Aug 7, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  13. Binkie4
    Post

    Covid-19 vaccination experiences

    @Brian Vastag has tweeted, retweeted by @dave30th See new Tweets Conversation [IMG] Brian Vastag @brianvastag ยท 4 Aug "Note to other...
    Post by: Binkie4, Aug 6, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  14. Binkie4
    Post

    UK Action for ME petition: 'Equity for ME' asking UK governments for equity of recognition and research funding with long Covid. closes 26th Nov 2021

    I agree the LC group are going to need to be careful about what 'treatments' are developed for their illness and that they are at risk from...
    Post by: Binkie4, Aug 5, 2021 in forum: Petitions
  15. Binkie4
    Post

    UK Action for ME petition: 'Equity for ME' asking UK governments for equity of recognition and research funding with long Covid. closes 26th Nov 2021

    I have signed it on the grounds that the petition asks for the same level of research funding and recognition as long covid, not the same...
    Post by: Binkie4, Aug 5, 2021 in forum: Petitions
  16. Binkie4
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    On MEA fb page a short time ago, Dr S , in response to a question said that while Nice is continuing its work without the 3 members who have...
    Post by: Binkie4, Aug 3, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  17. Binkie4
    Post

    Covid-19 vaccination experiences

    Thank you for posting this @Wyva,, particularly with such detail about side effects. I have had 2 AZ vaccines, have seroconverted but with very...
    Post by: Binkie4, Aug 3, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  18. Binkie4
    Post

    Lipomas, Dercums, Adiposa Dolorosa

    @yME I see Professor Mortimer and team at St.George's Hospital in south west London. Once diagnosed, there seems to be little treatment apart...
    Post by: Binkie4, Jul 20, 2021 in forum: Fibromyalgia and Connective Tissue Disorders
  19. Binkie4
    Post

    Lipomas, Dercums, Adiposa Dolorosa

    I came across the following. Liposuction for chronic lipoedema is being considered by NICE. It is not something I have been following but there is...
    Post by: Binkie4, Jul 18, 2021 in forum: Fibromyalgia and Connective Tissue Disorders
  20. Binkie4
    Post

    EDS, hypermobility, and the link, if any, to ME/CFS

    I found a link to the Norris lab where the work is being done. It describes the work in more detail....
    Post by: Binkie4, Jul 17, 2021 in forum: Fibromyalgia and Connective Tissue Disorders
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