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  1. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    At the moment, a lot of different health problems are being lumped into ME/CFS. So much gatekeeping in ME/CFS seems to based on the assumption that there is reliable method of separating one subset from the others. The lumping is even more evident in LC (which to be fair, is intentionally...
  2. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Long covid patients might be motivated to deny the similarity because they're afraid that the association with ME/CFS could burden LC and prevent progress. I think they have an inaccurate view of how stigma and neglect works. LC is at very high risk of being stigmatized and neglected because...
  3. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I really don't understand the logic here. It's a bit like those people who seem to think that you can choose your reality. There is quite obviously a subset within LC that is very similar to ME/CFS and it doesn't help anyone to pretend otherwise. Some people think there is something to be...
  4. Hoopoe

    New Garmin “High Intensity Exercise” monitoring and what it showed my body is doing

    It's the POTS. I also often feel like I'm doing strenuous work when in reality I'm just sitting there. I'm not as severely ill so I don't have to lie in bed much during the day. Low blood volume or blood pooling or similar things could create conditions in the body where the heart has to work...
  5. Hoopoe

    The theory of effort minimization in physical activity (TEMPA), Cheval, B/ Boisgontier, M (2021)

    Let's hope Chalder doesn't read the forum or she will very soon find this disorder is real, as proven by responses to questionnaires after CBT, and obviously best treated with CBT. And the best part is almost the entire population needs treatment. A real goldmine.
  6. Hoopoe

    The theory of effort minimization in physical activity (TEMPA), Cheval, B/ Boisgontier, M (2021)

    When I moved out of a dirty city into a beautiful town with many trees and gardens, my physical activity increased without having to force myself. Instead of the usual psychological view of the individual being the problem and somehow, 80% of the population being lazy, the low levels of...
  7. Hoopoe

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    I have no doubt that Ron's team is doing the best they can.
  8. Hoopoe

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    It's not a contradiction if he wants to test it against a sample of patients with the same illness, instead of a sample of patients with random illnesses.
  9. Hoopoe

    Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts, 2021, Missailidis et al

    Mitochondrial complex V is also called ATP synthase. A decline in its function seems like it would be a big deal (especially if this affects all cells). It's not the only source of energy in the body but it's a big one.
  10. Hoopoe

    Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts, 2021, Missailidis et al

    My interpretation is: in a previous study, their main finding was a mitochondrial complex V inefficiency, in cells that had been immortalized. Immortalization of cells is an invasive technique and they need to be sure that this complex V inefficiency is due to ME/CFS and not the immortalization...
  11. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I can see how it could easily happen in various ways, but it's a bit complicated to explain and some speculation is involved. It has a lot to do with systematic bias and nonuniformity of the illness. The idea is that covid-19 is expressed differently in every person, depending on factors such...
  12. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    RT-PCR tests have varying reliability. For example their sensitivity depends on time passed since infection onset. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7240870/ It's also possible that the tests are especially unreliable for long covid patients because their expression of the illness...
  13. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    The long covid groups seem to believe that long covid is often associated with mild initial disease and not having antibodies on tests. Yesterday I read that antibody tests have low sensitivity in women. That could lead to an underestimation of long covid as the people with negative tests are...
  14. Hoopoe

    Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts, 2021, Missailidis et al

    The glutamine caught my attention because my mother says she needs to take glutamine before going to sleep or she will wake up from hypoglycemia or epilepsy (the two are connected). She has suffered from mystery illness for many years and also had postinfectious ME/CFS for a while and I suspect...
  15. Hoopoe

    Preprint: Physical phenotype of blood cells is altered in COVID-19, Kubankova et al, 2021

    Would increased expression of proteins related to the actin cytoskeleton result in increased cell stiffness?
  16. Hoopoe

    The biology of coronavirus COVID-19 - including research and treatments

    One for @Jonathan Edwards perhaps, because some strange cell signalling appears to be causing blood flow problems in the brain of covid-19 patients. https://jamanetwork.com/journals/jamaneurology/fullarticle/2776455
  17. Hoopoe

    The use of the labels ME, CFS, ME/CFS

    In Italy and many other countries society doesn't appear to have this derisive contempt towards ME/CFS that's seen in English speaking countries. Instead the main problem appears to be a lack of recognition and indifference. In the UK people in a way the topic gets more attention, more research...
  18. Hoopoe

    The use of the labels ME, CFS, ME/CFS

    I may have said it already but in Italy the term ME is generally not used. CFS still seen as a syndrome of fatigue (instead of a syndrome of exertion intolerance). Fatigue however appears to be more socially acceptable than in other countries. The desire to avoid having the illness associated...
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