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  1. InitialConditions

    Video: Phil Murrays ME/CFS full recovery story & call for more research funding

    That's not what he said. You are mishearing 'improved' as 'increased'. The exact quote is: "over many many many months I improved slightly, and when I improved slightly I just felt better for longer...". He then goes on to say: "I must stress here: I didn't feel better because I was doing more...
  2. InitialConditions

    Video: Phil Murrays ME/CFS full recovery story & call for more research funding

    I would thoroughly recommend this video. I know Phil, as others here do. He has been involved with M.E advocacy for many years—first with Westcare and then Action For ME, as well as the CMRC PAG, and now has a role with DecodeME. He had M.E and recovered over many, many years with strict...
  3. InitialConditions

    United Kingdom: News from Forward-ME Group

    See my posts from July: United Kingdom: CFS/ME Research Collaborative (CMRC) news The CMRC will remain a separate entity as a new Chair was found. The CMRC PAG remains a member of FME (though not in Steering group), but our primary role is still to provide a patients' voice to the CMRC.
  4. InitialConditions

    Request for patients' stories harmed by GET

    This is, as far as I can see, an effort to exert some sort of pressure on NICE and their decision to pause. This is not about reopening/revising the evidence base. This is not 'for NICE'. They already have evidence of harm, and acknowledged they had seen such evidence in the guideline.
  5. InitialConditions

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

    These are new documents, added in the past month. There are people in BACME driving for change, and there are those who are more wedded to the old narratives. I sense a 'managed climbdown'.
  6. InitialConditions

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

    I think this guideline will be the start of the end for 'CFS/ME'.
  7. InitialConditions

    Request for patients' stories harmed by GET

    I think there has been a request from Dr Myhill (perhaps the Dr in Countrygirl's post), as well as a separate one from Tanya Marlow, and it's all got a bit confusing. Anyway, while I appreciate the effort, I'm not sure this is a worthwhile use of resources. NICE has already acknowledged harm—if...
  8. InitialConditions

    Request for patients' stories harmed by GET

    Yep. But I'm pretty sure that is not Tanya Marlow writing there... It's all very confusing and it's not the right approach.
  9. InitialConditions

    Request for patients' stories harmed by GET

    This is (clearly, to me at least) a case of crossed wires. NICE wouldn't ask for 50 stories by the end of the day! This is for NICE, not from NICE. It is a request from a patient (Tanya Marlow), who is collating stories.
  10. InitialConditions

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    NICE has just written to stakeholders explaining that the guideline has been 'paused'. I don't know what to say! I am fuming. This post has been copied and discussion is being moved to a new thread: NICE pauses publication of updated ME/CFS guideline hours before publication - 17th August 2021
  11. InitialConditions

    United Kingdom: News from Forward-ME Group

    That probably would have helped. I expect they've received lots of feedback from all member organisations of FME and now it's just a case of waiting for the site to be updated.
  12. InitialConditions

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Can I please suggest we start a new thread for press and media for the guideline release. This thread is getting very long and much of the content posted recently isn't about the draft guideline.
  13. InitialConditions

    United Kingdom: News from Forward-ME Group

    As I noted somewhere in this thread, we submitted lots of feedback on the website. It needs lots of work. We didn't know the test site was going live before our feedback and corrections had been considered. I think (hope) it's a work in progress.
  14. InitialConditions

    Daily energy expenditure through the human life course, 2021, Pontzer et al

    Google "does metabolism slow down with age" Then look at the results, as well as the sample answers from the "People Also Ask" section. Every answer from every webpage would be wrong according to this study, e.g...
  15. InitialConditions

    Daily energy expenditure through the human life course, 2021, Pontzer et al

    Many people believe metabolism ramps up in teenage years, peaks in 20s, and declines from 30s, as has been taught in the past. This study disproves this.
  16. InitialConditions

    Daily energy expenditure through the human life course, 2021, Pontzer et al

    The actual paper is here (again, paywalled): https://science.sciencemag.org/content/373/6556/808
  17. InitialConditions

    United Kingdom: BT Home Essentials broadband for people on specific benefits

    It's certainly overpriced in the circumstances you describe, but not—as in my case—if the speed guarantee is 32Mb, which is slightly higher than what I get now for £25 a month.
  18. InitialConditions

    United Kingdom: BT Home Essentials broadband for people on specific benefits

    Ah sorry to hear that. Perhaps worth trying again as maybe they were having teething problems? No, I am with NowTV broadband (until tomorrow).
  19. InitialConditions

    United Kingdom: BT Home Essentials broadband for people on specific benefits

    https://www.bt.com/exp/broadband/home-essentials I've just moved to this. It looks like the speeds will be no less than my current plan. Who can get BT Home Essentials? New or existing BT customers can apply. You’ll also need to be receiving one of these benefits to qualify: Universal...
  20. InitialConditions

    Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

    There are people posting on Facebook—under an ME Association post about this video—saying they have seen this physio and were very happy with her approach, which reveals that there really is no need for the old silly narratives of deconditioning, etc.
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