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    Action for M.E.'s big survey, 2019

    Unfortunately surveymonkey does not let you save and return to a survey- a method where you could do this would have been ideal as you could have broken it down into sections and done a bit at a time. I suppose a more complex interface would have been expensive to set up? ETA hadn't read full...
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    SMILE trial data to be released

    I think this is a very valid point - what is the attendance datum ( say for the previous 3-6 months) from which you are measuring. The interventions have to be set oin context to what is " normal" for these individuals. This age group is also the one with the best prognosis for natural recovery...
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    SMILE trial data to be released

    If there is a lot of missing data how robust can any conclusions be. I suspect data protection rules may have stymied procuring official attendance records. When it comes to children data sharing can be extremely strict in education. The study may have straddled timescale for recent data...
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    Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection, 2019, Wyller et al

    Both my son and daughter were ill after glandular fever ( we do not do serology here to know whether EBV/ CMV). Both did not have significant glandular fever ( were not stuck in bed . sore throats mainly, tested afterwards when not getting better was an issue ) but both had issues recovering. My...
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    UK: Contaminated Blood scandal

    Hmm It' s similar to the Gosport Hospital scandal too - things moving now after years and years. I take it enough people have died off to reduce compensation and / or some people in charge have retired/ died ...
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    Acute psychological stress increases serum circulating cell-free mitochondrial DNA, 2019, Picard et al

    What surprised me was that this is news. Having read and been told that your body does not differentiate between physical and psychological stress, that cortisol modulates over 300 genes, that in rat models stress is epigenetically expressed and for some genes heritable, i had perhaps assumed...
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    Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of.., 2019, Loades et al

    Perhaps cognitive dissonance is a protective measure. Bottom line is that too few people actually want to participate. Whilst i have no direct experience, from parents forums there was often a perception that it was a Hobson' s choice situation for some, and others had been pestered so much to...
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    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    I did read a wee bit about this a long while ago ( the Maryanne Demasi fiasco). All cause mortality seems to have been forgotten about. Only of use if you had had a heart attack previously. There was also a difference if you were female. There is also the small issue that cholesterol doesn't...
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    "Answer to IBS is in the mind" - media coverage of new Chalder/Moss-Morris trial

    Although a tricyclic it works on seratonin pathway. Do you have seratonin issues?
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    Blog: "The PACE PLOS One data will not be released and the article won’t be retracted", James Coyne

    Any way we could link this to @dave30th to boost contributions?
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    A general thread on the PACE trial!

    I am just surprised that noone already has.
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    Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Holtzman et al. (2019)

    Yup, I can exercise (power walking for one hour 2-3x/week) on days I'm feeling ok without PEM or feeling anything the next day. Out of interest @Mij , how long has it taken to get to this state?
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    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    This says everything about why funding David should be a priority 21st century UK.
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    Open Recruiting: Stony Brook University, Daily Activity Patterns and Heart Rate Variability in ME/CFS

    My aunt is severely affrcted, so this may not mean anything for you, but heart palpitations seem to correlate to magnesium status for her. Things have been much better since she dies magnesium via injection
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    Open Recruiting: Stony Brook University, Daily Activity Patterns and Heart Rate Variability in ME/CFS

    Could it be cumulative activity ? We have big variation 2 days after anything significant - it ramps up and down either side of this. So max heart rate could be on a day where nothing much is being done ( other than PEM)
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    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    What a wasted opportunity. So much that could have been captured and analysed . This seems a halfhearted attempt to publish something rather than setting out to find something meaningful. No doubt there will be a follow up which will swallow more funding. It is a potentially good subject in...
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    BBC1 Doctors 17 April 2019 Storyline about PIP (UK benefit)

    Some programmes do stay around but need searched for. Adam Curtis' "Bitter Lake" was accessible fir 2 years, but needed a bit of searching.
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