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  1. NelliePledge

    Blog: What’s Happening When Living Systematic Reviews…Stop? by Hilda Bastian

    Maybe it’s more of a shot across the bows, those with influence in Cochrane must surely know the relevance. eventually someone who knows what’s gone on behind closed doors will spill the beans
  2. NelliePledge

    Cognitive Behavioural Therapy to Optimize Post-Operative Fracture Recovery (COPE): Protocol for a Randomized Controlled Trial, 2022, Busse et al

    At what point post surgery do they move from usual care to CBT? What usual care is the CBT actually replace oh I see it says enroll 2-12 weeks post fracture. So it’s replacing in person physio?
  3. NelliePledge

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Yes would definitely be good to hear about these presentations, seems like they are attempting to move with the times, interesting to hear what these initiatives in different locations involve. something mentioned there about co production which I know nothing about but I think @Suffolkres has...
  4. NelliePledge

    Well-known, famous people with Covid-19 and Long Covid

    Yes highly likely a troll
  5. NelliePledge

    Covid-19 vaccination experiences

    I’ve had the flu one today just usual sore arm and usual pem from having to stand briefly in a queue and while the jab was done. Covid booster in 2 weeks
  6. NelliePledge

    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Oct 2022

    Yes me too a paper letter I had to go on their website to unsubscribe. Pretty sure I also did in previous years.
  7. NelliePledge

    The Atlantic - Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases - by Ed Yong

    Some better quality coverage definitely such as Sean O’Neill in The Times. And Even the Guardian has stopped being consistently awful.
  8. NelliePledge

    UK: Blue badge blues

    Hi Sarah I’ve not done one of these although I am hoping to do so soon. I think not being able to get back to the car ought to be enough to qualify you for the blue badge. I can manage quite a lot further distance as a one off so I am thinking I would need to say something about pushing to...
  9. NelliePledge

    Long Covid in the media and social media 2022

    https://www.s4me.info/threads/visible-a-platform-designed-for-any-invisible-illness-that-benefits-from-resting-and-pacing-including-me-cfs-long-covid.23542/#post-438057 An interview about the Visible App has been moved to this thread
  10. NelliePledge

    Closed UK: DecodeME updates, was recruitment thread.

    But a lot of people with ME in the UK don’t have private health insurance or enough money (especially folks on benefits) to pay from income for genetic counselling. If people want to get private DNA testing and counselling that’s a different issue. This funding is to research ME of as many...
  11. NelliePledge

    Closed UK: DecodeME updates, was recruitment thread.

    Yes because there’s so little research been done it’s not surprising people don’t get it straight away. Plus people generally don’t read into the detail of any information, tending to skim through.
  12. NelliePledge

    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    The only way to know if this round will result in some progress is to continue with it, chipping away at the status quo with common sense, science, the back up from NICE guidelines, cross party political support through APPG. Like the NICE guidelines it will be less than desired but if we can...
  13. NelliePledge

    Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

    Yeah I record more on days when I’m doing (clothes) washing and yeah those numbers seem high I’m moderate and on bad days less than 1000 steps
  14. NelliePledge

    News from Scandinavia

    Snake oil.
  15. NelliePledge

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    For those like me who don’t know anything about Zeynep they have almost 490k Twitter followers. Professor at Columbia University
  16. NelliePledge

    United Kingdom - Thérèse Coffey appointed Secretary of State for Health and Social Care, Sept 2022

    As far as I’m aware it’s standard practice for ministers offices to send out a steer on how to draft letters for the minister’s signature and also on any preference the minister has for the format of written briefing. This is a storm in a teacup. Sadly the press prefers to focus on such non...
  17. NelliePledge

    Letter to BMJ: "Medical gaslighting: to say that invoking psychological symptoms is equivalent to dismissal is reductionist", Michael Sharpe

    Well we shouldn’t be surprised he wanted to comment. He is after all an expert on gaslighting.
  18. NelliePledge

    Return-to-Work Following Occupational Rehabilitation for Long COVID: A Cohort Study, 2022, Brehon et al

    Interesting @rvallee I had to go down to 15 hours paid a week but often couldn’t reliably manage that so yeah 10-15 hours a week. Which is unviable financially and in quite a lot jobs/roles you’re not making a viable contribution to the employer/clients due to deadlines.
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