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  1. InitialConditions

    UK: New £14 million investment targets rare diseases

    No, that's why I used quotation marks!
  2. InitialConditions

    UK: New £14 million investment targets rare diseases

    Suddenly ME/CFS is no longer 'a rare disease'.
  3. InitialConditions

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

    Are you able to ask your friend for further details i.e., how they know about said programme?
  4. InitialConditions

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

    I agree. I highly doubt that a recent Panorama episode was made without anyone in the UK world of ME knowing about it. Please don't take my skepticism personally. Happy to rescind it on any evidence of said programme!
  5. InitialConditions

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

    Thanks for all your comments so far. Remember this is just a (potential) story pitch, and I imagine that generally once a story is pitched via email (for example) that person is not involved in whatever is produced. So I have not considered potential interviewees etc, because it's highly...
  6. InitialConditions

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

    Yes, this could be an alternative story/angle that would perhaps negate the need to dive into the controversy about PACE etc.
  7. InitialConditions

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

    The whole programme is about children being pressured into psychological therapies. Sure, the BPS got a bit more organised after this, and became more prominent, but the philosophy behind how patients were treated was much the same in the late 90s as it was in the 2000s and 2010s, and in some...
  8. InitialConditions

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

    Yes, I did consider this, but ultimately I want the story to be on ME because it really hasn't been told on primetime TV. The roll-out of the new NICE guideline links with long covid because many are being referred to ME clinics (and finding that they really have nothing to offer).
  9. InitialConditions

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

    Yes, this is the only other Panorama on ME, I believe. It's a good doc. I uploaded it here:
  10. InitialConditions

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

    I generally like Panorama, and I thought the recent doc on anti-depressant withdrawal was quite good. It had similar themes as what I'm proposing. However, this could be directed to Dispatches if people thought that was a better/less risky option.
  11. 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!
  12. 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.
  13. 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...
  14. 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...
  15. 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.
  16. 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...
  17. 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.
  18. 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...
  19. InitialConditions

    UK House of Lords/ House of Commons - relevant people and questions

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