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  1. Jonathan Edwards

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    My worry is that people like yourself might actually think that the mind wave measurer had some sort of scientific basis and could actually measure something. The sort of equipment I think being used cannot possibly indicate anything about brain function. It is a bit like using a volume readout...
  2. Jonathan Edwards

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    Fair enough but the mention of 'industrial partners' makes it pretty clear that this is being financed by the manufacturers. I have no doubt the researchers would like to think they are being helpful but then this is the problem with the therapists at Bath - and they like to think they are...
  3. Jonathan Edwards

    David Tuller - Discusses M.E./C.F.S and the UK Medical Establishment. 19 Oct 2019

    I wasn't there but I had a sandwich lunch with David on Friday and provided him with an A4 copy of the SMILE trial for him to tear up on Saturday.
  4. Jonathan Edwards

    News from Scandinavia

    These are the things that worry me. As I see it the problem here is that because of disagreement between health care professionals children and young people are being taken into care. That cannot be right. If there is justification for discontinuing the treatment received in the private sector...
  5. Jonathan Edwards

    Denmark: Interview with Per Fink in Dagens Medicin

    Yes, thanks. There have been emails.
  6. Jonathan Edwards

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    But what is they see and think they understand what is important but in fact none of it is important!! Who decides whether they have understood what is important?
  7. Jonathan Edwards

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    Well the chap in charge has on his personal page: We aim to deliver next-generation project dashboards and data visualisations that can identify potential project issues, improve productivity, and improve the management of aspects such as intellectual property, risk and cost. I can see a value...
  8. Jonathan Edwards

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    I don't understand what makes this academic research rather than market research for some electronic devices of no known medical validity. The brain wave device looks complete quackery.
  9. Jonathan Edwards

    Naltrexone restores impaired transient receptor potential melastatin 3 ion channel function in NK cells from ME/CFS patients, Cabanas et al, 2019

    Naltrexone hydrochloride (NTX) acts as an antagonist to the μOR thus negating the inhibitory function of this opioid receptor on TRPM3. Therefore, understanding the mechanism of action for NTX in regulating and modulating TRPM3 channel function in NK cells will provide important information for...
  10. Jonathan Edwards

    Functional movement disorders, 2019, Galli et al

    I disagree here. What is meant by incongruent or inconsistent is that findings on a full neurological examination are not all consistent with the same sort of neurological lesion. As an example, a person with a sudden onset of right sided arm and leg weakness and difficulty speaking with loss of...
  11. Jonathan Edwards

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Absolutely. I was not aware of any hostility to Phil in recent posts. The truth needs to be spelled out but I have not seen anyone being personally unreasonable or hostile.
  12. Jonathan Edwards

    Action for M.E. 2019 AGM and conference 15th October 2019

    Keeping bureaucrats employed.
  13. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    So what are the statistical chances of more than one person in the trial having undiagnosed PA? I am sorry but, like most studies of supplements, this is junk and I see little point in trying to find obscure reasons to justify it! They should have done a proper trial and they could easily have...
  14. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    There is also the puzzle that the responders already had higher B12 levels at the start. Maybe they 'responded' because they were into vitamins and had taken more before. The possible confounders here could fill a book. There is no justification for not just doing a double blind trial.
  15. Jonathan Edwards

    Action for M.E. 2019 AGM and conference 15th October 2019

    I think an important point of the Nacul study was that definition of ME is so uncertain that you have a tenfold range of possible prevalence and in order to know what prevalence is for any given set of criteria you have to re-check each case because the raw data on records will be wildly...
  16. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    I suspect the non-responders could not cope as well with the faff of going on sticking stuff in their nose and were non-responders because they didn't really buy in to the placebo effect on offer. I thought B12 absorption was supposed to be dependent on intrinsic facts in the stomach and since...
  17. Jonathan Edwards

    Open Trial of Vitamin B12 Nasal Drops in Adults With [ME/CFS]: Comparison of Responders and Non-Responders, 2019, van Campen et al

    In the non-responders, only a small but significant increase in vitamin B12 levels was observed. In contrast, in responders, the number of steps, the physical activity scale of the RAND-36, and the vitamin B12 serum levels increased significantly. I cannot be bothered to read more than the...
  18. Jonathan Edwards

    Action for M.E. 2019 AGM and conference 15th October 2019

    This struck me hard in the context of the NICE committee. The answer to the criticism of PACE from the therapists is that they do not do the treatment that way anyway. So there is no evidence base at all! They do not appear to understand the ethical responsibility to know what they are doing. It...
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