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  1. Adrian

    Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs

    I think the IoM report may have used similar language in that they were saying a diagnosis is due to the characteristics in the criterial (things like PEM) (perhaps with suitable exclusions) rather than because other causes can't be found.
  2. Adrian

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

    The HRA isn't an audit body in that it doesn't actually do checks. They expect certain documentation to be sent and check it ticks their boxes. An auditor would go in and demand access to all the information and select randomly from that to look for evidence that what is being claimed is...
  3. Adrian

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

    We can give a strong message that if GRADE finds (or allows some to find) that what are really poor quality trials (with measurements that are highly subject to bias and a lack of control for different expectiations) then it does not mean that the trials provide moderate evidence but that GRADE...
  4. Adrian

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I'm not sure if this is related to long covid but thought this tweet was interesting. It is refering to data from the UK labour force survey and is pointing out a rise of about 150,000 people who are economically inactive due to long term health problems (from dec-feb 2020 to July-Sept 2021...
  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 that is clear in their comments to NICE. Although I wonder if there is some cognitive dissonance which doesn't allow them to grasp that their work is not up to standard - that is quite natural for individual researchers but that is where there needs to be good governance processes and...
  6. Adrian

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

    There is a difference between oversight and audit. Audit (or at least form the perspective of the auditors I've worked with) involves looking at two things - firstly are the defined processes and proceedures being followed and in the case of a trial I expect that would be is the protocol and any...
  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 interesting looking at this from the perspecitive of different disaplins. As someone who works in security we do reviews of systems to try to spot potential failings and security issues but I think more importantly try to build methodology and tools into the standard processes in order to...
  8. Adrian

    Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders, 2021, Eijsbout

    The sampling issues can be worse if they are just using 23andME which is a paid for service. I thought there were some accuracy issues with it as a service as well.
  9. Adrian

    Genome-wide analysis of 53,400 people with irritable bowel syndrome highlights shared genetic pathways with mood and anxiety disorders, 2021, Eijsbout

    I think this may be a key point. What is probably more interesting is what mechanisms the genes are involved in. For example NCAM1:NCAM1 neural cell adhesion molecule 1 [Homo sapiens (human)] - Gene - NCBI (nih.gov)
  10. Adrian

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    Yes its one of the reasons that 'clinical experience' can be very dodgy for trying to form any sort of evidence base. Yet this is what the RCs seem to believe is the right approach as 'the doctor is always right' in their view.
  11. Adrian

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    There is a different conclusion which is that they don't follow up so they don't see harm because they cover their eyes and look the other way. The problem becomes one of whether therapists acknowlegde harm (and if a protocol says symptoms can worsen initially then perhaps they effectively...
  12. Adrian

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

    The GRADE process and systematic review is done by a technical team not the committee but the committee provide some guidance.
  13. Adrian

    Improving images used to depict ME/CFS

    It may be a case of getting someone to add better search terms. But I agree understanding the process that photo editors go through to select a photo is essential
  14. Adrian

    Improving images used to depict ME/CFS

    It can even be cheaper than using free photos where they would need to spend time checking out a license wo it seems important to get the right pictures in the repositories they use.
  15. Adrian

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

    There is an issue in that I've not mapped s4me.info to www.s4me.info. So they are different URLs and recognize as such by browsers (having realized I hadn't done this originally I decided not to since it could cause people some password issues (depending on how browsers remember passwords).
  16. Adrian

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

    I think that is really important and will probably need tobe highlighted multiple times.
  17. Adrian

    UK: Priority Setting Partnership for ME/CFS

    I think there is always a trade-off between doing things like this or not. One of the points made was around it help in arguing for more money from the research councils who take the output seriously (hence worth doing). But there is always the danger that bad research will be the outcome (or at...
  18. Adrian

    House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

    I think with John Prescott they always went through an editing process to make the meaning clear.
  19. Adrian

    House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

    I think some people still do (its still used)- just not pregnant women.
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