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  1. Hoopoe

    Do catatonia and ME/CFS have pathophysiological similarities?

    Speaking about funny neurological symptoms, what is it when for a very brief moment (the duration of the blink of an eye), I feel like my brain is distracted and very busy with something, and then there is the sensation that something about the outside world is different even though everything...
  2. Hoopoe

    Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS, 2021, Joseph et al

    RAP is the blood pressure in the right atrium of the heart (one of the four chambers in the heart). I'm not sure how important a healthy blood pressure is in there but it seems like a disturbingly large difference between patients and controls. Something is very wrong. I'm not sure I understand...
  3. Hoopoe

    Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis, Safadi, 2021

    There's a lot of truth to this in my opinion. I apologize in advance for giving such a disgusting and explicit description of what this is based on: I tend to have episodes of diarrhea with coincide with bad mood and generally feeling intensely unwell. Once the last load of diarrhea is expelled...
  4. Hoopoe

    Open GEM study - Prevalence of genetic diseases in ME/CFS patients, 2022, Esther Crawley, Bristol University

    Pompe's disease is glycogen storage disease type II https://en.wikipedia.org/wiki/Glycogen_storage_disease_type_II
  5. Hoopoe

    Nat Commun - Early-life-trauma triggers interferon-β resistance and neurodegeneration in a MS model via down regulated β1-adrenergic signaling - Khaw

    The claim is questionable since both of these are retrospective studies. https://pubmed.ncbi.nlm.nih.gov/19188532/ https://pubmed.ncbi.nlm.nih.gov/22408134/ They may simply be measuring the effect of illness severity on the current mood of patients which can influence how past events are rated.
  6. Hoopoe

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Why not be loved by saying these magical words: we got it wrong with ME and want to make it right now. Let's talk how to make this happen. They won't do this because they're trying to maintain the illusion of being perfect.
  7. Hoopoe

    Medical scientists and philosophers worldwide appeal to EBM to expand the notion of ‘evidence’, BMJ Evidence Based Medicine 2020

    By internal inconsistent theories do you mean something like continuing to propose autoimmunity in ME even after the null results from Rituximab trial, without being able to explain how it could still be autoimmunity? Or is it more like the CBT/GET illness model that contradicts itself by...
  8. Hoopoe

    Medical scientists and philosophers worldwide appeal to EBM to expand the notion of ‘evidence’, BMJ Evidence Based Medicine 2020

    Is it babble or is there some real insight? If you have to ask the question it's probably babble.
  9. Hoopoe

    Psychological therapies. Discussion thread.

    Coming to accept one's disability, and "coming out" as having a controversial illness is psychologically difficult but also important. And I have problems with self esteem due to achieving so little in life. It's unfortunate that psychologists and psychiatrists seem to generally have so little...
  10. Hoopoe

    Why is an ordinary life not good enough anymore? — Alain de Botton

    Such a psychologically healthy message.
  11. Hoopoe

    Antibody-dependent cell-mediated cytotoxicity (ADCC) in familial myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (2021), Sung et al

    https://www.tandfonline.com/doi/abs/10.1080/21641846.2021.1876613?journalCode=rftg20
  12. Hoopoe

    A Molecular network approach reveals shared cellular and molecular signatures between CFS and other fatiguing illnesses, 2021, Comella et al

    What MXD1 does: it seems to suppress the process of making ribosomes (which in turn make proteins). STX3: involved in exocytosis (a way to transport molecules in bulk out of the cell). Also involved in the growth of axons and dendrites of neurons. DYSF: involved in skeletal muscle repair...
  13. Hoopoe

    A Molecular network approach reveals shared cellular and molecular signatures between CFS and other fatiguing illnesses, 2021, Comella et al

    CFS patients did an exercise test, with blood samples taken before and on the following 3 days. RNA-seq, followed by differential expression analysis of sorted immune cells showed little difference. That sounds like a failure to replicate PEM. They suggest it may be due to an insufficiently...
  14. Hoopoe

    Trisha Greenhalgh on ME/CFS and Long Covid

    If only we could get Monbiot to write an article on the PACE trial and the culture of BPS junk science.
  15. Hoopoe

    Trisha Greenhalgh on ME/CFS and Long Covid

    We're not especially in need of "more caution", but taking the initiative with well reasoned arguments because in reality we're in a strong position. The BPS people are reduced to personal anecdotes of benefit, TG just found out things are a little more complicated than "a small vocal minority...
  16. Hoopoe

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

    If proteins related to the cytoskeleton, cell-cell communication, extracellular matrix, etc. keep showing maybe it's time to physically look at cells of patients and the spaces inbetween them. My understanding is that different kinds of ephrins in different tissues which would be a clue as to...
  17. Hoopoe

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I feel like people are being close-minded about the possibility that Garner really did have something that is very close to or the same thing ME/CFS is, if only for a several months. His bizarre interpretation of what led to his recovery is a distraction from the important observation that he...
  18. Hoopoe

    Trisha Greenhalgh on ME/CFS and Long Covid

    The lack of criticism I think it has a lot do with fear of reprisal. They're sensitive to criticism and tend to respond aggressively to it. Nothing is allowed to tarnish the image of the competent expert. The irony is that with this close mindedness you can't ever become very competent.
  19. Hoopoe

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

    One ancient method of diagnosing diabetes was to test whether ants were drawn to the urine of the patient. In ME/CFS we're still not much further ahead than this it seems. Make patient exercise, if they get worse it's ME/CFS.
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