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  1. Hutan

    Low blood pyruvate levels and their association with chronic fatigue syndrome and BMI, 2024, Râtea

    Lower levels of pyruvate than what? Healthy controls of the same age? Healthy controls of the same age and BMI?
  2. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    @MelbME, @Nightsong has posted copies of the BASC-3 PRS survey on the BASC-3 thread. It is pretty obvious that a child with ME/CFS would score very highly on the somatisation scale, as would any child with a debilitating chronic illness. What has taken me aback a bit is that I recognise some of...
  3. Hutan

    Behaviour Assessment System for Children, BASC - a discussion

    Thanks @Nightsong Yes. Here are some items from BASC-PRS A (A is for adolescent; C is for child) Complains of being sick when nothing is wrong Says "I think I'm sick" Avoids exercise or other physical activity Gets sick Isolates self from other Complains about health Complains of pain...
  4. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    I don't think that is true. There are still doctors trotting out 'stress' as a cause; I think that has been documented on the forum. There are still doctors pointing to psychosocial causes in multiple sclerosis. People generally love to say that people suffering misfortune have brought it on...
  5. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    But, we don't know that ME/CFS is complicated, it may be simple, it's just that we don't understand it yet. What specifically is complicated? Wouldn't 'poorly understood' be more accurate if that is what you mean? What multiple factors are involved in ME/CFS? Do you mean factors relating to...
  6. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    @MelbME, it would be helpful to know if you have overall responsibility for the combined project, and for ensuring the participants and their families are not harmed by the project. If there are in fact two separate projects, who has responsibility for the neuropsych project? It would also be...
  7. Hutan

    Behaviour Assessment System for Children, BASC - a discussion

    I found some slides with example items from the BASC-3 PRS. The bullet-pointed items are assessed by the parent, about their child. I think there is a scale to record the degree to which each item is true. Anxiety: The tendency to be nervous, fearful or worried Is fearful Has trouble making...
  8. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    There is more I could say, but I'll leave you to get on with your family. I hope, once you have had a chance to round up copies the surveys your study participants and their parents are completing and check the participant information sheet, we can come back to the questions in this thread.
  9. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Unfortunately, there is no good answer to what happens with the results of the personality/behaviour surveys. If the results, skewed as they will inevitably be and almost certainly over-diagnosing somaticisation and withdrawal, are sent to the young person's GP, the results could greatly affect...
  10. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Thank you, I really appreciate you replying here. Let's not get sidetracked by questions about whether people with ME/CFS have a fear of being associated with anxiety or depression; Or indeed whether my son and I had a negative experience with the clinicians. I hope you will have time to get...
  11. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    As I said, I don't think the ethics committees would have insisted on full surveys being applied - we see sub scales used on their own all the time. But, all this raises the question we have discussed on another thread: 'should studies be being done on children with ME/CFS at this time at...
  12. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    I think it is irrelevant to the concern I expressed whether anxiety and depression are thought of as physiological or mental health diseases. The concern I expressed was with the choice of the HADS survey tool and others. HADS has been found to over-diagnose anxiety and depression in people...
  13. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    The whole personality and behavioural field is far less sophisticated that it appears from a distance. I have been shocked at how ratings of serious mental health issues are derived from often inane questions. The survey instruments are claimed to have validity, but if you look deeper, the...
  14. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Typically, symptoms such as fatigue and headaches and behaviours such as thinking about your health are taken to be evidence of somatization. I don't know what the BASC asks in order to rate a child as being a somaticiser - you have to buy the questionnaire. Perhaps you can get the relevant...
  15. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Not at all. The BASC scale has 4 sub scales, so you can just look at one or more sub scale if you want. We see that happening all the time. Researchers might use the SF-36 just collect data on physical function for example and not use the social functioning module. Have a look at the BASC...
  16. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Did you read the cortisol thread we started to answer your earlier question? It's not complete yet, but it shows that there have been many studies finding normal cortisol levels. Maybe the cortisol discussion can be continued on the cortisol thread. Cortisol levels in ME/CFS I'm interested to...
  17. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Frankly, that is even more frightening than having some aggregated finding that the cohort of young people are, on average, somaticising. So, is it possible that young people will be told that the answers the parents gave to the survey have resulted in them scoring highly as a somaticiser? Or...
  18. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    But, can't you see that the scales are collecting information that is hopelessly biased by the young people's chronic health condition? I think we need you to go a bit deeper and actually look at the scales and think about the potential for bias, rather than just waving this issue away with a...
  19. Hutan

    Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

    Sorry, I'm not understanding your reply. There currently doesn't seem to be any basis for believing that cortisol levels are abnormal in ME/CFS. What information are you talking about when you say 'is it real information or not'?
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