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  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. 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.
  7. 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.
  8. 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...
  9. 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.
  10. 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/
  11. 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.
  12. 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?
  13. 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.
  14. 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.
  15. Adrian

    Stanford University ME/CFS research center gets $1.2M grant from OMF.

    Sometimes if people have competing theories and different directions it makes sense to keep them separate. Trying to force groups together can cause conflict. If there are two different bets at Stanford that seems like a good idea. However it is a shame they don't share samples and other equipment
  16. Adrian

    Forward Me Group Minutes - 31st October 2017

    I've no idea what is in his mind. But the thing that seems really important is the way the review mechanism is set up and who is pulled onto the committee. This is what needs to be analysed/commented on and influenced. Then there is the evidence that gets looked at. My feeling is that there is...
  17. Adrian

    NICE Guideline stakeholders workshop Jan 2018

    I think we may register as a charity in which case we could probably register as a stakeholder. Do organizations need an 'official status' Do you know if there is any definition of a group?
  18. Adrian

    Forward Me Group Minutes - 31st October 2017

    I think that is why Baker's comments of the formation of the committee are particularly important. Sounds like he knows the guidelines are bad and they will remain bad if the committee is the same as before. Given their previous chair's 'training videos' pushing GET and her husband then I...
  19. Adrian

    Sunday Express: 'New laws could see scientists face CRIMINAL charges for research fraud'

    Also a lot of the rules apply to drug trials only so trials of other interventions such as CBT are not as heavily regulated.
  20. Adrian

    4 Dec | Oral evidence to UK Commons Select Committee on research integrity - live on Parliament TV?

    There were minutes from the MRC published somewhere (I think as an appendix in a welfare report) where Sile Lane and MRC representatives signed up to saying that FoI and parliamentary questions were harassment. I assume she will give the same message to the select committee that if they ask...
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