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  1. Hoopoe

    Video, Emerge Symposium 2019: Dr Neil McGregor, An Omic Analysis of ME/CFS – an Assessment of Potential Mechanisms

    Confusing indeed, but maybe it just depends on the point of view. In the cell versus what is going on outside. I'm glad researchers are finally looking into abnormal glucose tolerance.
  2. Hoopoe

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    There never was any intention to investigate or understand. It was about collecting bits to support the narrative of irrational death-threat making patients while stubbornly ignoring any information that contradicts it. Much like PACE was never about testing the treatments, but about convincing...
  3. Hoopoe

    OMF plan Times Square New York awareness campaign on ME awareness day

    I wonder if it's worth it purely from a donations point of view.
  4. Hoopoe

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    Illness beliefs are the basis of the BPS view, not deconditioning. They might be content with merely getting a patient to believe that ME is something that can be reversed with lifestyle changes, instead of the patient believing that they have an incurable neurological illness.
  5. Hoopoe

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    I have the feeling the accelerometer component of this study is Crawley trying to see if she can use actometers to support her claims of treatment efficacy. Either in this study, or future ones. She probably knows about the Dutch studies that obtained null results. An accelerometer study by...
  6. Hoopoe

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    I think this is problematic because on crash days the daily routines break down and only the minimum necessary is done. That could well exclude not wearing actometers. Although she doesn't seem to say anything about activity patterns, only levels. Edit: what I'm trying to say here is that it...
  7. Hoopoe

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    It's from the article posted on the previous page https://www.medscape.com/viewarticle/911906#vp_1
  8. Hoopoe

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    One possible reason this problem hasn't been figured out yet is that we either lack the technology or that everyone is looking at it from the wrong angle. Maybe the illness is nothing like the other illnesses that are known to exist and that's why approaching it like one of these other illnesses...
  9. Hoopoe

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Immunologist Derya Unutmaz, MD, who heads the NIH-funded Jackson Laboratory, has found immune system disturbances in deidentified cell samples from patients with ME/CFS, particularly in CD8 cells and T-helper 17 cells, which are involved in tissue inflammation. While emphasizing that the precise...
  10. Hoopoe

    Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies - 2018 - Dr Suzanne McDonald, Qld Australia

    At the NIH conference Keller said that wrist-worn actometers didn't show a difference in activity levels between patients and controls after an exertion test. She believed this was because patients spend a lot of time in front of smartphones, television and computers and wrist-worn actometers...
  11. Hoopoe

    Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies - 2018 - Dr Suzanne McDonald, Qld Australia

    In reality I'm crashing much more often but they are just small crashes. A longer lasting crash is much more interesting however and more visible in the data.
  12. Hoopoe

    Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies - 2018 - Dr Suzanne McDonald, Qld Australia

    Had I been recording my activity levels since October, it would have shown interesting patterns. Steady improvement with some fluctuations, with more and more regular activity, followed by a crash that has lasted several weeks so far where activity is reduced and more irregular. Six weeks may...
  13. Hoopoe

    News from Scandinavia

    He really seems utterly clueless. There are two errors here. The first is that one couldn't possibly tell from such a clinical trial whether expectations are determining outcomes, because the procedure was designed to ensure that expectations were the same in both trial groups. The second seems...
  14. Hoopoe

    Blockade of Exosome Generation with GW4869 Dampens the Sepsis-Induced Inflammation and Cardiac Dysfunction

    Unfortunately the data on sphingomyelin in ME/CFS is currently contradictory. One study found low levels, another high levels. This could be due to the technology still being unreliable or some other problem. So we don't know how sphingomyelin moves in this illness, or if it's even much different.
  15. Hoopoe

    Periodic Paralysis, myotonia, channelopathy and ME

    I'm not familiar with this topic, but is this the correct usage of the term paralysis? The patient is still moving his limbs, although he seems extremely fatigued. This is a bit similar to what I have occasionally which is extreme fatigue leading to collapsing on the bed in a semi-awake state...
  16. Hoopoe

    Cochrane ME/CFS GET review temporarily withdrawn

    Did she say anything about CBT for schizophrenia? If she can see the problems in that area, she should also see them in ME/CFS.
  17. Hoopoe

    Orthostatic intolerance

    This is a characteristic of POTS. The "worse in the morning" bit at least.
  18. Hoopoe

    Mystery illnesses reveal the power of our minds to influence health, New Scientist

    While the names being used for the concept changes, the concept itself has not changed much since the 18th century. The idea is there are diseases of organic origin and diseases of emotional and mental origin. Functional disorder is now used to refer to these diseases of emotional and mental...
  19. Hoopoe

    News article - The crippling brain condition doctors say is all in your mind

    Re. the slide above. I have wondered before how many instances of malingering are the result of a dysfunctional healthcare-system/patient relationship where the patient is not taken seriously and tries to be taken more seriously by exaggerating their problems.
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