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  1. InitialConditions

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Thanks Jonathan. You've picked up on a few things that I've edited out and changed, so perhaps I need to edit them back in!
  2. InitialConditions

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Thanks for your comments. Will definitely use this thread to discuss any potential concerns.
  3. InitialConditions

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Text: For several decades, the views and research of small but powerful group of British psychologists and psychiatrists have determined the medical care and treatment of the estimated 250,000 people in the UK living with the life-changing illness myalgic encephalomyelitis / chronic fatigue...
  4. InitialConditions

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    As noted in some discussions on the forum, many of us feel that a Panorama-style programme on the PACE trial and the wider story of ME/CFS is much warranted and overdue. There are people on Twitter who feel the same. I have decided that it would be good to contact Panorama (and potientially...
  5. InitialConditions

    The Intriguing Role of Histamine in Exercise Responses, 2017, Luttrell

    I used to get quite bad hives after exercise (or showering after exercise), usually on my legs near the bottom of my shorts. Always thought it was heat related, and hadn't made this link before.
  6. InitialConditions

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    I finally had an email response from the authors (after an email to the editor). Your comments on our study were sent to us by the editor of CID. We apologize for not responding directly to your mail. Your email ended in our spam box and was missed by us. Below we respond to the 4 remarks. We...
  7. InitialConditions

    Anti-convulsants - Pregabalin and Gabapentin

    Can you expand on this? What symptoms specifically, and how does it help? I was prescribed this early in my illness but never took it.
  8. InitialConditions

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

    Apparently, nearly 50-year-old Robbie Williams' breather between songs on a German date during his world tour is PEM! (He went from the Netherlands to the Isle of Wight the following day and played 'one of the gigs of his life' that evening). EDIT: Perhaps my post isn't clear. This isn't PEM...
  9. InitialConditions

    UK House of Lords/ House of Commons Questions

    Yeah this is a terrible question, and a complete waste of time.
  10. InitialConditions

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    The corrected proof has been uploaded. Note this is basically just a journal typeset of the paper—there's no actual corrections as far as I can tell.
  11. InitialConditions

    UK Research and Innovation: Researching ME/CFS: highlight notice [First opened 2003]

    I think this is the way forward. Focus on ME. It will limit the scope and make the proposal more targetted, but the method/results could be generalised and applied to other illnesses.
  12. InitialConditions

    UK Research and Innovation: Researching ME/CFS: highlight notice [First opened 2003]

    Obviously, this is an NIHR proposal and there's no NIHR highlight notice for ME/CFS, but I am aware of projects where part of the funding comes indirectly from other sources (i.e., a mix of MRC and NIHR). Have you seen this...
  13. InitialConditions

    UK Research and Innovation: Researching ME/CFS: highlight notice [First opened 2003]

    I think that's probably worthwhile. My question is how much is your proposal specific to ME/CFS? It seems the overall concept of the research is more general, but you would use ME/CFS as a sort of case study?
  14. InitialConditions

    Framing depression as a functional signal, not a disease: Rationale and initial randomized controlled trial 2023 Schroder et al

    Personally, I don't think we should be using unproven hypotheses to explain illnesses to patients. We had this with the dysregulation model stuff for ME/CFS back in late 2021. I happen to think it matters whether the explaination is true (or not)!
  15. InitialConditions

    Phd project: Developing an AI-driven BCI-based neurofeedback device to treat chronic post-viral fatigue syndrome University of Essex

    Honestly, I hate all this stuff. We don't even understand the basics of fatigue or brain fog and we're playing around with neurofeedback devices and AI. This just feels like researchers playing with toys of their choice. Also, the way this project is framed makes me think that this is motivated...
  16. InitialConditions

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    I didn't know that they outsourced it. This seems like the sort of work that could be done in-house, especially if your org has 25+ staff.
  17. InitialConditions

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Minutes for the 2023 AGM. The minutes for the regular meeting that followed the AGM will be published once they are approved at the June APPG meeting.
  18. InitialConditions

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    Standard deviation shows spread, but standard error is used to compare means between groups, usually via significance testing using confidence intervals. But in this case, as the numbers in the two arms are essentially the same, we can just use standard error as a proxy for standard deviation.
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