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  1. dangermouse
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Hello, I have received another spit kit, though I sent mine back many months ago. I didn’t receive an email to say that it was received but...
    Post by: dangermouse, Dec 24, 2023 in forum: Recruitment into current ME/CFS research studies
  2. dangermouse
    Post

    Gary Burgess - The ME show, and updates about Gary's health.

    Dear Gary, so very very sorry to hear you’re news. I will not forget all that you have done for our community, one of our hero’s. Kindest, best...
    Post by: dangermouse, Oct 22, 2021 in forum: General ME/CFS news
  3. dangermouse
    Post

    United Kingdom: ME Association governance issues

    This is very concerning. From what I’m seeing here and some awful testimonies what is MEA thinking?
    Post by: dangermouse, Oct 7, 2021 in forum: Organisations relevant to ME/CFS and Long Covid
  4. dangermouse
    Post

    Anybody had any improvement of pain symptoms from HRT?

    Hi @Maria1 - thanks, I'm exhausted by it all but relieved to be home. I'm so sorry to hear that you get migraines too, they are really...
    Post by: dangermouse, Sep 24, 2021 in forum: Pain and Inflammation
  5. dangermouse
    Post

    Anybody had any improvement of pain symptoms from HRT?

    Just to update: I presented with TIA symptoms at hospital (sent to a special unit that bypasses a&e thanks to my GP! I had told him I couldn’t...
    Post by: dangermouse, Sep 23, 2021 in forum: Pain and Inflammation
  6. dangermouse
    Post

    Anybody had any improvement of pain symptoms from HRT?

    Hi @Maria1 I started a trial of HRT three months ago and I have not experienced any improvement of pain. In fact I’ve had horrendous increases...
    Post by: dangermouse, Sep 23, 2021 in forum: Pain and Inflammation
  7. dangermouse
    Post

    Video: Phil Murrays ME/CFS full recovery story & call for more research funding

    That link is very helpful thank you @lunarainbows
    Post by: dangermouse, Sep 17, 2021 in forum: General ME/CFS news
  8. dangermouse
    Post

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

    I am not well enough to be around the forum consistently and would like to thank you all very very much for this and everything that you do for...
    Post by: dangermouse, Aug 31, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  9. dangermouse
    Post

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Huge thanks to all who have contributed and advocated for pwme. I’m not well so can’t be around much but I do appreciate everything you’ve all...
    Post by: dangermouse, Nov 9, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  10. dangermouse
    Post

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Similar thing happened to me. A CFS clinic called it pacing but encouraged baseline to do no matter how ill I felt, then increase by ten percent...
    Post by: dangermouse, Nov 9, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  11. dangermouse
    Post

    Gary Burgess - The ME show, and updates about Gary's health.

    Very sad news.
    Post by: dangermouse, Nov 6, 2020 in forum: General ME/CFS news
  12. dangermouse
    Post

    DecodeME - UK ME/CFS DNA study underway

    Thanks. I just want to make sure I did it right and that any emails don’t go into spam etc. Some of my family members have registered to be part...
    Post by: dangermouse, Jun 27, 2020 in forum: ME/CFS research news
  13. dangermouse
    Post

    DecodeME - UK ME/CFS DNA study underway

    I’ve registered, do you get a confirmation email? Just wondering.
    Post by: dangermouse, Jun 27, 2020 in forum: ME/CFS research news
  14. dangermouse
    Post

    DecodeME - UK ME/CFS DNA study underway

    Brilliant news. I’ve signed up. Thanks to everyone who made this happen.
    Post by: dangermouse, Jun 23, 2020 in forum: ME/CFS research news
  15. dangermouse
    Post

    Using our experience to help deal with isolation

    I saw a thread on Twitter (but forget completely who it was by) that was a pwME who was sharing tips for living in isolation, it was really...
    Post by: dangermouse, Mar 17, 2020 in forum: Advocacy Projects and Campaigns
  16. dangermouse
    Post

    Anyone have trouble writing by hand?

    I’ve had problems with writing for many years. I find it really embarrassing at times.
    Post by: dangermouse, Feb 23, 2020 in forum: Home adaptations, mobility and personal care
  17. dangermouse
    Post

    ME advocates & groups you can endorse (=vote for) in the WegoHealth awards 2019

    Just catching up .... congratulations & extremely well deserved. Well done.
    Post by: dangermouse, Feb 20, 2020 in forum: General ME/CFS news
  18. dangermouse
    Post

    Do you get a lot of heat in your head with a ME headache?

    I get migraines often. Long lasting. Always on left side with aura. The pain is in head, eye, sinuses, jaw, teeth, neck, shoulder and arm. I...
    Post by: dangermouse, Feb 20, 2020 in forum: Pain and Inflammation
  19. dangermouse
    Post

    Using cognitive behaviour therapy techniques with people who hold delusional beliefs : Cox - Oct 2019

    If only :whistle:
    Post by: dangermouse, Feb 20, 2020 in forum: Other psychosomatic news and research
  20. dangermouse
    Post

    Trial By Error: CBT and Irritable Bowel Syndrome

    Surprise surprise. It just gets better. I should be shocked but I’m not, I’ve recently been offered hypnotherapy .. yup.
    Post by: dangermouse, Feb 20, 2020 in forum: Other psychosomatic news and research
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