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  1. ME/CFS Science Blog

    Can we call ME/CFS a disease?

    Just to clarify that the International League Against Epilepsy (ILAE) is the organisation of epilepsy specialists and researchers that also prints the scientific journal Epilepsia. So it's not an advocacy group or patient organisation and they have published several case definitions of epilepsy...
  2. ME/CFS Science Blog

    In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling, 2021, Hanson et al

    I still have my doubts about this because most of these studies were really small. Not sure if these results will hold up in a proper study with a pre-specified protocol, large sample size, adequate control groups etc.
  3. ME/CFS Science Blog

    In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling, 2021, Hanson et al

    Yes but in ME/CFS there aren't even non-specific biomarkers. A person can be incredibly sick yet his main test come back pretty much normal. I'm not sure but I suspect in most other illnesses it will be easier to find abnormalities, even with low specificity, if a person has gotten so ill.
  4. ME/CFS Science Blog

    In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling, 2021, Hanson et al

    IMHO, the most important thing a hypothesis needs to explain is how a mechanism could cause the severe and chronic disability seen in ME/CFS while not showing any major disturbances in normal medical tests and various markers that have been tested repeatedly in ME/CFS patients. That's one of the...
  5. ME/CFS Science Blog

    Can we call ME/CFS a disease?

    In English, I think we can simply use the word illness if people find disorder or syndrome too confusing, so I largely agree with Jonathan (in Dutch we don't have the distinction illness - disease which makes things more complicated). Just wanted to flag that the 2014 definition of the...
  6. ME/CFS Science Blog

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie ME/CFS: 2021, Stanculescu, Larsson and Bergquist

    I'm disappointed that OMF and Bergquist sent out an email to highlight this paper.
  7. ME/CFS Science Blog

    Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie ME/CFS: 2021, Stanculescu, Larsson and Bergquist

    I'm not impressed either. I hope the current generation of ME/CFS researchers can come up with better hypotheses than this. HPA-axis, cortisol, growth hormone, thyroid hormones, cytokines, oxidative stress etc. all these things have been studied in the past 30 years without showing anything...
  8. ME/CFS Science Blog

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

    Last year there was this large trial on CBT for PNES, called CODES, but the results for the primary outcome were negative. It reported: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30128-0/fulltext David Tuller wrote about it here...
  9. ME/CFS Science Blog

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

    Also interesting is that PNES frequently occurs in patients who have epileptic seizures. See for example: read://https_www.ncbi.nlm.nih.gov/?url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC5862101%2F Soo patients with epileptic seizures frequently have this mysterious psychiatric...
  10. ME/CFS Science Blog

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

    And here's a Cochrane review from 2014 on psychological and behavioral interventions for patients with PNES. It concludes: There was a randomized trial of CBT by Goldstein et al. 2010 that initially reported benefit but the differences were no longer statistically significant at follow-up.
  11. ME/CFS Science Blog

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

    Here's a systematic review of surveys of patients with 'psychogenic non-epileptic seizures'. What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies - PubMed (nih.gov) It concludes: This message is repeated throughout the paper:
  12. ME/CFS Science Blog

    In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling, 2021, Hanson et al

    So if I understand correctly, this preliminary study tested 4790 unique human proteins in a small sample of 20 ME/CFS patients and 20 controls. After controlling for multiple testing, 9 proteins showed statistically significant differences between the two groups. These are summarized as...
  13. ME/CFS Science Blog

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

    Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review - PubMed (nih.gov) I thought this review from 2016 of Psychogenic non-epileptic seizures (PNES) was quite interesting because it suggests we know very little about this condition and that the...
  14. ME/CFS Science Blog

    Can we call ME/CFS a disease?

    Thought this was interesting: Do we belittle epilepsy by calling it a disorder rather than a disease? - PubMed (nih.gov)
  15. ME/CFS Science Blog

    The challenges of chronic pain and fatigue, Eccles and Davies, 2021

    The authors suggest considering problems with connective tissue (joint hypermobility), small fibre neuropathy, mast cell activation in patients with pain and fatigue. On the hand, they propose a multidisciplinary model based on the biopsychosocial approach and referral to a health psychologist...
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