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  1. NelliePledge

    Poll: In pwME that report worsened sleep following exertion/excessive activity (or during PEM) what happens to your sleep during an acute infection?

    Maybe advisable to add a link or copy to Canadian Consensus Criteria as that’s part of your options. I think I meet them but with the different criteria it’s difficult to remember what is in what.
  2. NelliePledge

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    I do still drink but only occasionally at social events. I’m not too bad if I have one glass but I still have worse PEM than I would have from doing the social event without drinking. I will have a couple offor special events birthday do, Christmas. I’m going to be in PEM for about 5 days...
  3. NelliePledge

    Lightning Process - discussion thread

    @CovidSpice It would probably be a good idea to alert patient organisations to this letter I’m not sure about LC organisations but ME Organisations would have contacts in NHS DHSC they could raise it with. Lighting Process is referred to in the NICE guidelines 206 on ME/CFS and is not to be...
  4. NelliePledge

    Crowdfunding for David Tuller starts October 1st 2024

    Pension day tomorrow so I’ve done mine :thumbup:
  5. NelliePledge

    USA: News from the Bateman Horne Center

    She’s from Workwell. I haven’t watched the video are both participants involved in talking about surgery or is Theresa Dowell talking about what Workwell do which is presumably the ‘other options’
  6. NelliePledge

    United Kingdom: News from #There for ME

    There’s definitely a case to be made that with Layla Moran in the chair of that committee the chance of at least getting heard is much better than in the past. Taking it to a Select Committee is a step up from the backbench debates, if successful a step up in political pressure. true It can...
  7. NelliePledge

    Query: Research into Visual Sensitivity

    In the UK University of Leicester have published a couple of papers on visual issues , I think one of their postgrads joined the forum as well so definitely worth looking for.
  8. NelliePledge

    What medical specialty should look after ME/CFS?

    Effectively a MUS clinic
  9. NelliePledge

    Should We Have a Better Term than Brainfog?

    The one that really frustrates me is if I’m in a social situation in conversation with two or three other people and I’m in the middle of a sentence but something makes the brain to mouth connection drop out and the second part just evaporates. I find myself interrupting and talking over people...
  10. NelliePledge

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    Ah magic all we need to do is change the description from chronic to long-term and that will give the hope that will make everything so much better. Lightweight thinking.
  11. NelliePledge

    News from the USA, United States of America

    I don’t understand why people keep announcing that viruses have long term effects as some kind of revelation.
  12. NelliePledge

    Should We Have a Better Term than Brainfog?

    It’s like there’s a loose connection yes Ezzie. Showing my vintage reminds me of Trying to start a car with a manual choke and you’re going through the steps of pulling out the choke turning the key and pumping the accelerator but it still won’t start.
  13. NelliePledge

    Puffy face

    Hard to say if you are on the chubby side
  14. NelliePledge

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Posts discussing an event involving Paul Garner have been moved to https://www.s4me.info/threads/paul-garner-on-long-covid-and-me-cfs-bmj-articles-and-other-media.15629/page-108
  15. NelliePledge

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Oh gosh yes instigate security measures like cardboard cups for the coffee so there’s no rattling noise.
  16. NelliePledge

    News from Austria and Switzerland

    https://www.s4me.info/threads/me-cfs-post-doc-post-at-medical-university-of-vienna.40819/ ME/CFS Research post at Medical University of Vienna
  17. NelliePledge

    Long Covid Clinic, Dr Binita Kane YouTube videos

    We have started a thread this is a series of videos with Dr Binita Kane
  18. NelliePledge

    Cost-utility analysis of transdiagnostic [CBT] for people with persistent physical symptoms in contact with specialist service... 2024 McCrone et al

    Have they ever set out what is supposed to be involved in this “standard medical care”. Because as most of us know in real life standard medical care is about £0.
  19. NelliePledge

    Sleep problems in ME/CFS - discussion thread

    That’s quite a common schedule for me. I usually wake around 11 go to the loo take my paracetamol etc and go back to lying in bed for about an hour until the paracetamol takes the edge off
  20. NelliePledge

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Oh dear @JohnTheJack sorry you came up against that - what ignorance on behalf of the scheme designers.
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