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  1. NelliePledge

    Questionnaire to see what different people in the community Hope from the UK MRC

    Fund some actual biomedical research and stop wasting time on anything else.
  2. NelliePledge

    Gravity-induced exercise intervention in an individual with CFS/ME and POTS, 2019, Ballantine, Srassheim, Newton

    When I read the first couple of posts I thought maybe someone should email a link to this thread to this guy. On reflection not sure it would be appreciated as genuine feedback and I realise I have added to the flippancy so apologies for that
  3. NelliePledge

    Chronic illness inclusion project blog The uncertainty principle

    Blog by Fran Halsall who has fibromyalgia and MS diagnoses. Mentions the difference in how the two are dealt with. https://inclusionproject.org.uk/the-uncertainty-principle/
  4. NelliePledge

    MS Fatigue and Lassitude (2014)Matt Allen G -blog on multiplesclerosis.net

    this was interesting I wasn’t aware MS had its own fatigue terminology- lassitude. https://multiplesclerosis.net/living-with-ms/ms-fatigue-lassitude/
  5. NelliePledge

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    Indeed we used to get urgent changes published within a couple of hours - certainly the same day. They seem to be still focused on their paper based publication rather on than the web
  6. NelliePledge

    Do all ME / CFS sufferers have low stamina?

    yes definitely stamina is a lot worse than before I was ill before I was ill I could walk quite long distances and do more intense activity in short bursts but ive never been able to run over a distance and even as a relatively fit 30 year old used to struggle more than friends when going uphill...
  7. NelliePledge

    Anger rumination mediates differences between fibromyalgia patients and healthy controls..., 2019, Toussaint et al

    anger rumination another one to add to the BPS tripe terminology list their ridiculous assumptions and terminology make me bloody angry
  8. NelliePledge

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    wow well at least my cynicism is proved wrong in this case its just a ridiculously convoluted quill pen last millenium process to get changes made to a web page - perhaps they should try faxing each other it might be quicker :banghead:
  9. NelliePledge

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    seems like my cynicism is beginning to look accurate what does now mean it could mean I'm now engaging in a process of dealing with this rather than I am now about to get a change made to my website. Assuming they have professional people dealing with their website (I doubt he does changes...
  10. NelliePledge

    Harvard ME/CFS Collaboration Symposium June 8th 2019

    Great to see the Nottingham guys there
  11. NelliePledge

    United Kingdom: ME Research UK (MERUK) News

    Yes I don’t think many people will get through a full copy of a research paper on a phone - the summary maybe. I thought you were talking about some kind of newsletters as in the original post. I think the format for research papers a whole different level of content from a newsletter. Pdf is...
  12. NelliePledge

    United Kingdom: ME Research UK (MERUK) News

    Better to avoid 2 column. It isn’t easier to read as you have to scan down the page twice. If you use headings, sub headings, bulleted lists, plenty of white space and keep the wording succinct it will be easy to read both online and for anyone who still prints out. Fitting a lot on a page...
  13. NelliePledge

    #MEAction Scotland News

    I think the point about funding in proportion to disease burden is probably quite difficult for any politician or medical establishment figure who might actually have some influence on funding to argue against they would look pretty pathetic if they do. If 30x that was actually given to make up...
  14. NelliePledge

    United Kingdom: ME Research UK (MERUK) News

    Why do organisations persist with these paper style formats when everyone reads online now. Three column format is so 20th Century and not easy to read on screen. ETA Maybe this comes across as grumpy reaction but the format stopped me reading it. I’ve sent MERUK an email and link to some...
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