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  1. Adrian

    Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

    I believe you are doing home collection of blood samples. Does that mean that you are getting collections from severe patients? Also as you collect blood have you considered potential effects due to patient exertion prior to the blood being drawn, does home collection help here?
  2. Adrian

    Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

    Can you tell us anything about the types of analyses that are planned and the numbers of patients that would be involved?
  3. Adrian

    Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

    Is the ME Biobank done in conjunction with other BioBanks so that data can be compared across different populations of people with chronic illnesses. Would this help pull out things that may be due to inactivity vs particular signals for ME?
  4. Adrian

    Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

    I have a further question relating to this study. One of the things they seemed to be reporting was differences between fresh and frozen samples. Could this be an issue for the biobank and have you looked at it?
  5. Adrian

    Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

    I assume that the longitudinal study is aimed at looking for correlations between changes in peoples reported symptom level and blood markers over time? In doing this does this allow people to be references to themselves in terms of blood markers? And hence pick out potentially important...
  6. Adrian

    Lecture by Emily Beardall of Action for ME

    It's not clear that there were harms in the patients that were followed up (or at least more than other groups). I think the other groups caught up with the GET/CBT groups over time. The released data didn't seem to suggest harms being recorded in the GET group. But the issue here is what is not...
  7. Adrian

    Measuring School Functioning in Students With Chronic Fatigue Syndrome: A Systematic Review, 2017, Tollit et al

    It is surprising. Even the free school stuff didn't cover someone setting up an online school. There are companies offering online education but they are expensive and very hard to get local authority to pay for. Also online tutoring is available privately we did get someone to pay for lessons...
  8. Adrian

    Clare Gerada: influence on UK medical practice and ME/CFS management

    From what I see too many GPs default to doing nothing and dismissing patients (hence the desire to push for psychogenic diagnosis). We have had years of patient blaming from people like Gerada talking about the 'worried well' leading to late diagnosis. We see this continuing with a push on MUS...
  9. Adrian

    A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of ME/CFS (2017) Nilsson et al.

    It did make me wonder. Quite a lot of people with ME seem to have an intolerance to drugs and I believe some antidepressants are particularly bad. So it did make me wonder if drug intolerance could be a valid subgroup but then people would have had to have tried the drugs to know they were...
  10. Adrian

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    I only just realized that this comes from 2009. I think status of the arguments have moved on in terms of a better understanding of the failures in the evidence for CBT. I was going to say it sounds like he had a dodgy briefing but I wondered if the claims for CBT as a cure were pushed more...
  11. Adrian

    Article: “I was ready to give up on my life with ME ... but Perrin treatment miraculously changed everything”

    I have a theory that when someone is starting to feel a little better they look for potential treatments, try things like this and continue to improve. When it is nothing to do with what is being tried and the improvement started prior to testing the treatment. Which is of course why we need...
  12. Adrian

    A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of ME/CFS (2017) Nilsson et al.

    Its an exploratory subgroup analysis so they may have looked for lots of possible subgroups and could have just come on one at random where there is a difference.
  13. Adrian

    Menon - Mitochondrial Modifying Nutrients in Treating Chronic Fatigue Syndrome: A 16-week Open-Label Pilot Study

    I agree and if you need high numbers in a trial chances are the effect is small.
  14. Adrian

    Menon - Mitochondrial Modifying Nutrients in Treating Chronic Fatigue Syndrome: A 16-week Open-Label Pilot Study

    The way stats testing works is that you try to reject the null hypothesis (that two groups are the same) and in doing do try to show a difference between the groups. In doing this the sample size makes a difference. This is why in doing a trial a power calculation is normally done to workout the...
  15. Adrian

    Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome (2017) Wyller et al.

    Yes and I don't see why they can't quote both. Sometimes differences between the mean and median are informative in terms of the distribution but it would be better if they gave scatter plots. I thought this was becoming common. That lets the reader see the distribution of the data.
  16. Adrian

    UK House of Lords/ House of Commons - relevant people and questions

    Thats the one. They are developing a new service not analyzing service data http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/
  17. Adrian

    Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome (2017) Wyller et al.

    I would generally favor the median as it is more robust to outliers and makes less assumptions about linearity of any scale.
  18. Adrian

    UK House of Lords/ House of Commons - relevant people and questions

    Is this the one that Tuller wrote about as it didn't have ethical approval?
  19. Adrian

    Esther Crawley gets 'commendation' at 2017 Maddox Prize awards.

    I meant the argument that if a couple of individuals send angry messages that constitutes a campaign of harassment from the ME community. I probably hadn't read your message carefully.
  20. Adrian

    Esther Crawley gets 'commendation' at 2017 Maddox Prize awards.

    Whilst she would use such an argument I don't think it is valid. I would see it as a form of discrimination in that the actions of individuals are being used to discredit a whole group.
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