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  1. Adrian

    Bias due to a lack of blinding: a discussion

    Having looks at some of the ONS data for sf36 I would be worried that it is not really comparable when looking at people with different severity. I did a cluster analysis looking at how question answers clustered around different scores and the mid scores were a mess in terms of which...
  2. Adrian

    Bias due to a lack of blinding: a discussion

    I think the thing about validating scales and what it means to validate a scale is more down to a lack of systematic logical thinking and asking the question of what are the properties of a scale necessary for a given experiment and what evidence is there to validate that the scale has those...
  3. Adrian

    Bias due to a lack of blinding: a discussion

    Not only do you have to validate it against something you know you have to validate different properties and in doing so understand what properties you are relying on. But there is no understanding of what different properties of a scale may be in this community. I don't think its post truth...
  4. Adrian

    Bias due to a lack of blinding: a discussion

    I think it means that be believes that if a scale is validated and/or in an important area for patients or doctors then it is not subject to reporting biases. This doesn't make sense. Perhaps what he really means is everyone does it and others who follow this pattern of behaviour think it is...
  5. Adrian

    Of the ICC-ME authors who have subsequently published in the field (based on PubMed), all have subsequently used ME/CFS and/or CFS

    I think one of the really critical things is how easy are criteria to operationalize and thus being simple is important. This includes things like having clear definitions of things or questions to ask. Jason is one of the few to have done work in this area but to me it is critical. I think...
  6. Adrian

    The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample (2020) Jason et al.

    I think the phone thing could be interesting. I believe in the UK those in rented accommodation and poorer people tend to be less likely to have a fixed phone line, relying on mobiles instead. I assume that the phone numbers were land lines?
  7. Adrian

    What does MS fatigue feel like? (Aug 2, 2019) by Jennifer Huizen - Medical News Today

    I think that some research to try to describe fatigue better and in different diseases would be good.
  8. Adrian

    Article: 'Is standing up for expertise a fool’s errand?' - Simon Wessely still being portrayed as the 'victim'

    His papers are vague with jumps in reasoning and language that can be reinterpreted. But that is what should be taken apart in his work as in science there is no place for such practice.
  9. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think there is value in that this cohort could be used to help select smaller sets. This may be particularly the case if there are potential subtypes due to different genes which could lead to researching into different mechanisms. Or be used for epidemiology studies (such as the one norwegen...
  10. Adrian

    Dealing with the unknown. Functional neurological disorder (FND) and the conversion of cultural meaning, 2020, Canna and Seligman

    The symptoms probably mirror the deep trauma that people suffered during their childhood? So if you went to a party and played blind mans buff or pin the tail on the donkey the trauma would cause functional blindness?
  11. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I suspect it is a general discussion. But it depends on what you are using the sf-36 for. It can be a rough guide to the level of disability and interesting to look at individual answers. Where I think it fails is in using the differences as a measure of improvement because it certainly isn't...
  12. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I wonder if there will be a problem that there will be a number of people who don't have an ME/CFS diagnosis but all the symptoms (perhaps in a mild form) and hence don't identify with the disease. There will be a number who are told they have depression who don't have an ME diagnosis etc So...
  13. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think there has been mention of access to medical records which is another potential way to find patients. I don't know how medical records are organized (whether they are structured data or just text fields) but these days even if there are just free text there are some very good toolkits to...
  14. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I wonder if there is also an issue if there are too many people in the same families (i.e. if a high proportion of those included also have a member of the family with ME who is included how will that squew any genetic results). I think 20000 will be difficult but should be possible.
  15. Adrian

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think Jason has done a number of studies looking at different criteria and comparing them in terms of the numbers of patients covered as compared to cohorts from doctors with ME experience. I think he has also looked at the overall effectiveness of his depauls questionnaire which may be where...
  16. Adrian

    Psychosomatic therapy for patients frequently attending primary care with MUS,the CORPUS trial: study protocol for an RCT-Wortman et al 2019

    Its probably important to look at the primary and secondary outcomes to get an idea if the trial is going to give any meaningful information, A form for the patient specific functionalscale us here http://www.tac.vic.gov.au/__data/assets/pdf_file/0020/27317/Patient-specific.pdf It looks like...
  17. Adrian

    MAGENTA (Managed Activity Graded Exercise iN Teenagers and pre-Adolescents) - Esther Crawley

    I wonder if this in the abstract suggests that one site was doubtful
  18. Adrian

    FOI request re PACE Cost-Effectiveness Analysis

    The control through this service is quite limited in that they don't provide the data but they provide access to an online stats service so you can compute stats on the data (assuming SAS does what you want). So the researchers never get the data. I don't know if they restrict what can be done...
  19. Adrian

    FITNET-NHS Esther Crawley - 5th protocol out now

    This is perhaps an interesting comment within the amendment So they are recruiting more children with co-morbid mood disorders than expected. Which could follow though to their overall result.
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