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  1. Adrian

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    It is about how you sell your work and the importance of it. I remember one of the jokes about papers when I was doing my PhD was most were only ever read by the author and reviews. So its not about saying papers are not important but rather talking about the impact that a paper (or other...
  2. Adrian

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    I guess there is a question here about how you see yourself as a researcher and how you can be effective. An alternative view point (and I'm just putting this as something to think about and it is not a suggestion) would be to build expertise and reputation in the overall area of your work and...
  3. Adrian

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    So talk about what you think is valuable in terms of directions. What is are these types of research and how do they bring value in terms of knowedge that helps patients. I think we should see far more research than Decode. Personally I would like to see more omics research (and it has been...
  4. Adrian

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    Papers are all very good for an academic. But you are asking patients to fund your research I would suggest that rather than talking about the difficulty in publishing you could talk about the outcomes that the research shows and what the outcomes will publishing the papers will give patients...
  5. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think it was Rachel and Richard who presented at the last CMRC conference about the new review (as it was then). That was 2 years ago. I think they got very strong pushback particularly for keeping the flawed review up.
  6. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I'm not surprised they are digging their heels in. There failures here highlight serious issues with the way the overall organization works, flaws in their processes and a lack of editorial control. It is easier for them to dig their heals in and pretend things are working than to admit to...
  7. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Its always good to give a date to a committee (with a goal). It may slip but that then becomes a concious decision and reasons and new proposed times need to be given. I also wonder if they could have done a quick evidence review before trying to define a protocol. If they did they may simply...
  8. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Cochrane had choices if Hilda was not able to progress this as she was doing other things that she considered a higher priority then they could have looked for someone else to take on the task of somebody to support Hilda doing it. If they wanted to delay they could have issued a schedule and...
  9. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    They have been talking about doing a new review for over 2 years (I heard them talk at the CMRC conference just over 2 years ago) and they still have not come up with a protocol let alone a review. It does lead to questions as to why things are so slow and what the delay is. If Cochrane were...
  10. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think it would be interesting if there were legal liabilities associated knowingly with publishing poor medical advice. It would probably lead to significant changes in the way Cochrane do things and Journals would need to take corrections seriously
  11. Adrian

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think it is realy important to say that there is a huge difference between describing a disease and picking out those features that discriminate the disease from other diseases. Simply documenting and listing all the possible symtoms can just lead to confusion (I suspect especially with ME as...
  12. Adrian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Should we assume that Cochrane have just given up with this review? They were promoting it at the last CMRC conference which is almost 2 years ago yet there seems to be no measureable progress. It doesn't look good for Cochrane in how they don't take patient harm or evidence seriously.
  13. Adrian

    Lightning Process study in Norway - Given Ethics Approval February 2022

    I wonder what validated means. From what I remember the CFQ was validated in terms of detecting ill people vs healthy people (I remember a paper with a RoC curve). But I don't think I have ever seen any work to validate that it measures change well which is how it is being used in a trial - and...
  14. Adrian

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    I think it shows how deluded the people writing this paper are to talk about worry as a general concept with the idea that if you tell people not to worry they will get better. But I do think as a practical thing doctors who can recognize specific worries and deal with them in practical ways can...
  15. Adrian

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    If patients are worried early on as diagnosis happens it could be useful for a doctor to find out specific things that are worrying them and provide better information and advice. For example, someone could be worried about work and how to deal with occupational health so advice on this could be...
  16. Adrian

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    I think the time line may be interesting. If they ask people about anxiety prior to them getting a solid diagnosis and then after CBT they can't rule out other things such as the importance of having a diagnosis (which can help and getting one can be really stressful). It seems sloppy (but I've...
  17. Adrian

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    It does look like they have a lot of missing data - it may be that they never collected/recorded everything or people just didn't fill out the forms. But they are not being clear about it. I also thought the "polytechnic" catagory in education was a bit weird as they became univerities many...
  18. Adrian

    GERD, acid reflux, heartburn and hiatus hernia

    My wife had a Hiatus Hernia and diet changes made a big difference in terms of managing the pain. Although it did seem to involve removing anything with flavour from her (and our) diet (spice, garlic, tomato, citrus friut, fatty foods etc) Once she had changed her diet she really ended up with...
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