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  1. Kirsten
    Post

    News from Scotland

    Scotland's new version of PIP, Adult Disability Benefit, just began. I hope it's as good as it sounds....
    Post by: Kirsten, Aug 30, 2022 in forum: Regional news
  2. Kirsten
    Post

    UK: Council Tax and potential discounts

    I only know about Scotland, sorry to the other UK nations. But there are a couple of other ways you can get a council tax discount if you have a...
    Post by: Kirsten, May 17, 2022 in forum: Work, Finances and Disability Insurance
  3. Kirsten
    Post

    A general thread on the PACE trial!

    But doesn't this contradict another foi where they said they should release the data, but couldn't because no-one knew how to access it anymore...
    Post by: Kirsten, Apr 4, 2022 in forum: Psychosomatic research - ME/CFS and Long Covid
  4. Kirsten
    Post

    Open NIH: Proof of concept trial on the effect of Ketamine on Fatigue Study

    I had an operation at the end of last year and the pain team gave me ketamine. It was wonderful for pain relief but did nothing for my ME. It made...
    Post by: Kirsten, Feb 14, 2022 in forum: Recruitment into current ME/CFS research studies
  5. Kirsten
    Post

    News from Scotland

    I've just read that the devolved Scottish disability benefit (Adult Disability Payment) is almost ready to be launched, and will be phased in from...
    Post by: Kirsten, Jan 26, 2022 in forum: Regional news
  6. Kirsten
    Post

    DecodeME - UK ME/CFS DNA study underway

    Thanks for your answer @Andy appreciate you taking the time to let me know. Really excited for this study. Kx
    Post by: Kirsten, Dec 23, 2021 in forum: ME/CFS research news
  7. Kirsten
    Post

    DecodeME - UK ME/CFS DNA study underway

    Hi, i'm not sure if this has been covered already, but i couldn't find anything in the FAQs, so thought i'd ask here in case anyone knows. If...
    Post by: Kirsten, Dec 22, 2021 in forum: ME/CFS research news
  8. Kirsten
    Post

    FOI Documents relating to NICE response to the US IOM report on ME/CFS in 2015

    Is it just me or do they sound confused about the underlying premise of GET/CBT being fear avoidance to deconditioning model. They say a couple...
    Post by: Kirsten, Nov 17, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  9. Kirsten
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    That Reddit Post broke my heart and brought back so many painful memories and emotions. This needs to stop. I've had ME for nearly 25 years, and...
    Post by: Kirsten, Nov 10, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  10. Kirsten
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    If only NICE had recorded or broadcast the RT, that could have put an end to the nonsense and shown these people for what they are...
    Post by: Kirsten, Oct 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  11. Kirsten
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I don't have the brain space to do this, but for those interested in the legal angles going forwards it might be worth collecting and saving...
    Post by: Kirsten, Oct 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  12. Kirsten
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    i think it's up!
    Post by: Kirsten, Oct 29, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  13. Kirsten
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I had depression added to my file as the main problem without my knowledge by my so called ME specialist. He did tell me he thought i had...
    Post by: Kirsten, Oct 28, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  14. Kirsten
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    You joke but my sleepy brain seems to recall a fad on breathing properly that folks were randomly recommending (good old unsolicited advice) to me...
    Post by: Kirsten, Oct 27, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  15. Kirsten
    Post

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

    I would simply say that: the problem isn't that it's a psychological diagnosis for ME, the problem is that it's the wrong diagnosis. That's all.
    Post by: Kirsten, Aug 16, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  16. Kirsten
    Post

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

    I understand it's better for the specialist services to remain open and hopefully adapt in terms of infrastructure etc. The thing i find really...
    Post by: Kirsten, Aug 13, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  17. Kirsten
    Post

    DecodeME - UK ME/CFS DNA study underway

    Sorry if this has already been suggested, i'm super foggy at the moment. But even just asking GP's to tell their ME/CFS patients about it. I know...
    Post by: Kirsten, Jun 28, 2021 in forum: ME/CFS research news
  18. Kirsten
    Post

    Which countries have ditched the BPS approach or removed CBT/GET from their guidelines?

    I would say the situation in Scotland is fairly mixed, although the statement certainly helped. And hopefully the new NICE guidline will as well...
    Post by: Kirsten, Jun 20, 2021 in forum: Psychosomatic theories and treatments discussions
  19. Kirsten
    Post

    BPS attempts at psychologizing Long Covid

    Ha ha. I might be willing to suck up the BPS nonsense if i got to do it in a sauna having just had a facial... ;) It would certainly beat the...
    Post by: Kirsten, Jun 11, 2021 in forum: Psychosomatic news - ME/CFS and Long Covid
  20. Kirsten
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Hi, don't know if this helps, but you can listen to most BBC radio (live and ondemand) from anywhere in the world. Radio doesn't have the same...
    Post by: Kirsten, May 19, 2021 in forum: Long Covid news
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