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  1. Amw66
    Post

    S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

    So once again no prominent notice next to very questionable science. What happened to " first do no harm" ( again)
    Post by: Amw66, Nov 14, 2019 in forum: Open Letters and Replies
  2. Amw66
    Post

    The longitudinal effects of seated isometric yoga on blood biomarkers, autonomic functions, & psychological parameters of [PwCFS], 2019, Oka et al

    If anyone can find the PROMS scale from the adolescent research to compare with CFQ it may be worth doing. It may flag up if there is a...
    Post by: Amw66, Nov 14, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  3. Amw66
    Post

    Developing and pretesting a new patient reported outcome measure for paediatric CFS/ME: cognitive interviews with children, 2019, Crawley et al

    I haven't looked at references...bristol/ holland/ Denmark as a guess? When will this narrative change?
    Post by: Amw66, Nov 13, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  4. Amw66
    Post

    Inhibition of Upf2-Dependent Nonsense-Mediated Decay Leads to Behavioral and Neurophysiological Abnormalities by Activating the Immune Response

    Why can't we accept that people are not all the same? Isn't cyclophosphamide pretty risky in itself?
    Post by: Amw66, Nov 12, 2019 in forum: Other health news and research
  5. Amw66
    Post

    Open letter to Dr Peter Fisher, Liverpool University, about a research survey on emotional distress and CFS. 2019

    Wood....trees... Life seems to gave been boiled down into parametric boxes to be ticked. In the process of dissection the importance and...
    Post by: Amw66, Nov 12, 2019 in forum: Open Letters and Replies
  6. Amw66
    Post

    Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

    Remember though that severe in paediatrics us being able to attend school for an hour. Otherwise its classed as PRS
    Post by: Amw66, Nov 12, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  7. Amw66
    Post

    The Lancet : “Sepsis hysteria: excess hype and unrealistic expectations.” reactions

    My aunts cousin died from sepsis this year aged 67. I don' t know what the underlying trigger was. Felt unwell, brushed off by GP. Felt really...
    Post by: Amw66, Nov 12, 2019 in forum: Other health news and research
  8. Amw66
    Post

    Developing and pretesting a new patient reported outcome measure for paediatric CFS/ME: cognitive interviews with children, 2019, Crawley et al

    Perhaps that this process had not been done before, and that simple aspects had not been appreciated explains the viewpoint informing the terms of...
    Post by: Amw66, Nov 12, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  9. Amw66
    Post

    Developing and pretesting a new patient reported outcome measure for paediatric CFS/ME: cognitive interviews with children, 2019, Crawley et al

    I find this sad. That research has been done for years with no patient informed context. That so little has been appreciated re effects of this...
    Post by: Amw66, Nov 12, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. Amw66
    Post

    London School of Hygiene and Tropical Medicine - LSHTM 120 keynote lecture: Alumni on the frontline of innovation 2019

    I thought the Havana incident had subsequently found to be related to pesticide use against Zika virus? The place had been doused with 5 times...
    Post by: Amw66, Nov 10, 2019 in forum: Other health news and research
  11. Amw66
    Post

    London School of Hygiene and Tropical Medicine - LSHTM 120 keynote lecture: Alumni on the frontline of innovation 2019

    Was infra sound ( low frequency wavelength) not researched as a potential weapon in 1950s?
    Post by: Amw66, Nov 10, 2019 in forum: Other health news and research
  12. Amw66
    Post

    Genetic Links to anxiety & depression (GLAD) study: Online recruitment into largest recontactable study of depression & anxiety, 2019, Davies et al

    MUS bedding in nicely?
    Post by: Amw66, Nov 10, 2019 in forum: Other health news and research
  13. Amw66
    Post

    Eye fatigue

    Eyes " not working" is more a normal situation these days. It is related to energy and effort. Lack of sleep probably adds to this. Pain related...
    Post by: Amw66, Nov 10, 2019 in forum: General and other signs and symptoms
  14. Amw66
    Post

    Impact of pharmacological agents on mitochondrial function: a growing opportunity?, 2019, Stoker et al

    One of the reasons Ron Davis advises against anti virals ?
    Post by: Amw66, Nov 9, 2019 in forum: Other health news and research
  15. Amw66
    Post

    A logistic regression analysis of risk factors in ME/CFS pathogenesis. Lacerda et al. 2019

    This
    Post by: Amw66, Nov 9, 2019 in forum: ME/CFS research
  16. Amw66
    Post

    Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy

    Thank you @Trish , and @Action for M.E. it is encouraging that changes have been made. As you say there are still concerns, but this is a...
    Post by: Amw66, Nov 9, 2019 in forum: Open Letters and Replies
  17. Amw66
    Post

    Is there any systematic research into the “ lived experience” of people with ME?

    I think this may have similar issues to the engagement issues with young people with ME. Communication may be an issue, asymmetric power...
    Post by: Amw66, Nov 7, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  18. Amw66
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Yes, but if you cannot access testing for differential diagnoses? Here we have standard blood panels, very limited thyroid function testing and...
    Post by: Amw66, Nov 4, 2019 in forum: ME/CFS research news
  19. Amw66
    Post

    London School of Hygiene and Tropical Medicine - LSHTM 120 keynote lecture: Alumni on the frontline of innovation 2019

    https://www.newscientist.com/article/dn14593-wind-turbines-make-bat-lungs-explode/ Air Pressure is a trigger for my daughter - who knows what...
    Post by: Amw66, Nov 4, 2019 in forum: Other health news and research
  20. Amw66
    Post

    Acute effect of strength training on mood of patients with fibromyalgia syndrome, 2019, Andrade et al

    Comments @PhysiosforME ?
    Post by: Amw66, Nov 2, 2019 in forum: Other psychosomatic news and research
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