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  1. L

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    To wide
  2. L

    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    Right
  3. L

    Neurons Exchange Virus-like Capsules

    Structural basis of arc binding to synaptic proteins: implications for cognitive disease. https://www.ncbi.nlm.nih.gov/pubmed/258646 Arc N-lobe binding is inhibited by small chemicals suggesting Arc's synaptic action may be druggable
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    Neurons Exchange Virus-like Capsules

    Retrovirus again https://www.ncbi.nlm.nih.gov/pubmed/293289 Cell. 2018 Jan 11;172(1-2):275-288.e18. doi: 10.1016/j.cell.2017.12.024. The Neuronal Gene Arc Encodes a Repurposed Retrotransposon Gag Protein that Mediates Intercellular RNA Transfer. Pastuzyn ED1, Day CE1, Kearns RB1, Kyrke-Smith...
  5. L

    Are objective outcomes of cognitive function possible?

    Me too.
  6. L

    David Bell about "slow sepsis" in ME

    There probably is no big structural change but there is loss of function. My guess: biochemical change and minor transient damage.
  7. L

    Are objective outcomes of cognitive function possible?

    Nowadays for me it does not matter how long I sleep. I wake up when I am rested or when my bladder alarms me but then I go back to sleep again when I have emptied it. When the alamclock wakes me and I have nothing urgent I go back tp sleep.
  8. L

    David Bell about "slow sepsis" in ME

    My degeneration had gone to far for pacing alone.
  9. L

    David Bell about "slow sepsis" in ME

    In my case fluctating and degenerative till I started taking the immunemodulator.
  10. L

    Rivka Solomon: Disease nearly keeps winner from Jewish Women Who Dared Awards

    Good to see Rivka is still active.
  11. L

    Are objective outcomes of cognitive function possible?

    When I was severe ( before becoming very severe) I said I was dementing. The strange thing was that between the episodes I could for instance not even remember how to make tea, I mentioned it to medical trained people and the response was: you are not. So between flares I seemed to have no big...
  12. L

    Guardian: "Don’t listen to Gwyneth Paltrow: keep your coffee well away from your rectum"

    Please do
  13. L

    What are the 'missing' research papers based on existing data that we wish scientists would write about ME/CFS?

    Yep
  14. L

    Breathlessness and air hunger in ME/CFS

    She could be right. I said my bottom lunglobs did not work end my upper lunglobs barely worked when I was at my worst. The improvement process tells me I am very likely right. Lungs are being cleaned now. I am pretty sure the lung problems are secondary to intracoastal muscle and pleura...
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    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    In my case flares were much worse when I still could do less.
  16. L

    Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study, 2018, Newton et al

    Everytime before my heart stopped it was working like crazy.
  17. L

    Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS, 2017, Nacul et al

    Ha.ha. Just cigarettes.
  18. L

    Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS, 2017, Nacul et al

    I sleep like a baby now but I still smoke like a chimey.
  19. L

    Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study, 2018, Newton et al

    Would it fit my experience? When I was at my worst my heart stopped several times. I could feel it fill and then it started beating again.
  20. L

    Aluminium based adjuvants and a disease hypothesis by Gherardi

    Why do the pro-inflammatory cells go there?
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