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  1. NelliePledge

    Does anybody else walk as though they're drunk?

    I get a weird way of walking when I've been out and my energy has gone I call it little old lady walking hunched over and I use a walking stick. It feels like my thighs have gone and pelvis not holding me up properly. And especially this feeling of legs and pelvis not holding me up standing at...
  2. NelliePledge

    IiME conference 2018 starting to fill in agenda: J Corbyn (to be confirmed)

    I know @Sasha I assumed it was going to be top scientists. I hope they wouldn't have put this up unless it was a very strong possibility.
  3. NelliePledge

    Opinion on "ME/CFS Service", UK

    Yes there are over 20 comments on Facebook post mostly with similar experiences.
  4. NelliePledge

    IiME conference 2018 starting to fill in agenda: J Corbyn (to be confirmed)

    picked this up on social media. wasn't at all what I was expecting when I opened the link Am I seeing things? http://www.investinme.eu/IIMEC13-13-13-Agenda.shtml If not my gob is totally smacked
  5. NelliePledge

    Science based Medicine: Placebo Myths Debunked

    Nice one @Woolie for flagging the term response shift bias Next time any of the BPS crowd do anything public we should hashtag them with it on social media
  6. NelliePledge

    ScienMag: Usual antidepressants may not work in patients with chronic illness

    Yes I had it and now nortryptiline over the last 2 years for sleep - worked ok at first but neither is that effective now. I'm not upping the dose the hangover is too much
  7. NelliePledge

    Esther Crawley - Uni of Exeter 17th Nov Mood Disorders seminar

    Now you're just teasing us. Will be glued to screen all weekend waiting to hear
  8. NelliePledge

    Unrest film - Jen Brea

    zero response the recording of the Royal free one on 7 Nov isn't up yet either. It doesn't take long at all to put something online don't understand the delay from Royal Free NHS site......
  9. NelliePledge

    Can physical assessment techniques aid diagnosis in people with CFS/ME? A diagnostic accuracy study, 2017, Perrin et al

    This is where I have to admit that I have had Perrin sessions- not from him. It attracted me fairly soon after I got diagnosed when I hadn’t even been referred to the NHS clinic. The sessions were the same price as the chiropractor I had occasional treatments from for my painful “hunching over...
  10. NelliePledge

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I'm stating the obvious but for these people who have no knowledge in my opinion it is worth specifically addressing the claim about needing to be a voice for patients - like the charities aren't providing a voice - which whatever folks think about specific issues - the NICE guidelines review...
  11. NelliePledge

    ME is not a functional disorder: ME Association 13,000+ petition sent to NICE

    He has to follow the process at this point not going to go public with anything it is the civil service way. I hope a lot of discussions are going on with his colleagues behind the scenes telling the authors to wake up and smell the coffee. Which - let's face it - he must have done when he...
  12. NelliePledge

    UK ME/CFS charity Xmas cards 2017

    https://www.facebook.com/pg/cards4investinME/posts/?ref=page_internal Alison is on Facebook cards4investinME
  13. NelliePledge

    UK ME/CFS charity Xmas cards 2017

    Cards 4 invest in ME Alison is on Facebook all her profits go to IIME and she has a good range https://online.flippingbook.com/view/545089/5/
  14. NelliePledge

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    During the afternoon 2-5 if I've not done anything much in the morning is my best physical time. Mental energy is better starting about 11am, again it depends how much I do how long it lasts. I do get a period late evening after 10 when I'm more alert again, linked I think to the tired but...
  15. NelliePledge

    Massachussetts Congressional Delegation made statement at Boston showing of Unrest film

    From this side of the Atlantic this seems really positive, especially when I saw Elizabeth Warren's name heading the list
  16. NelliePledge

    UK: Disability benefits (ESA and PIP) - news and updates up to end of 2020

    PIP appeals process inefficient use of funds is something the National Audit Office and the House of Commons Public Accounts Committee should be urgently investigating. Edited to add this is in addition to the Inquiry into PIP and ESA already underway
  17. NelliePledge

    It's not malaise!!!

    When I'd seen the references to blue cardigans I thought it was talking about physios who seem to have a different type of uniform to nursing staff. But maybe it is the unofficial uniform of the psychologists.
  18. NelliePledge

    What is the course of your ME/CFS?

    I'm genuinely not sure which to tick. I only got diagnosed 2 years ago although I have had mild me symptoms for several years before that. I had a worsening 2 years ago and have been worse again since August - more moderate when I'm worse. I find it hard to unpack what has caused ups and downs...
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