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  1. Hoopoe

    Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

    De facto FND is being used as garbage bin diagnosis, while being presented in public as specific entity. FND proponents are advancing the garbage bin usage, but fall back to the narrative of a specific entity with a long history in medicine and rule in signs when they encounter criticism. It's...
  2. Hoopoe

    Is PEM a feature of sarcoidosis?

    This description in a paper on sarcoidosis sounds like PEM (although not much detail is given so it's not clear). In this study they also performed repeated CPET and found "no impairment of maximal exercise testing" on the second test...
  3. Hoopoe

    Internet-delivered [CBT] for chronic fatigue among adolescents with a chronic medical condition, 2023, Nijhof, van de Putte, Knoop et al

    This seems to show once again that cognitive factors have don't have a causal role in disability. Whether the fatigue has really improved or not is also unclear.
  4. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    This whole thing now looks like a delay tactic to protect the careers and incomes of the CBT and GET industry.
  5. Hoopoe

    Long Covid in the media and social media 2023

    We could be doing exercise test studies where some intervention is given to see if it changes the response to the test. Over time as more studies of this kind are done it could lead to some understanding of what is going wrong.
  6. Hoopoe

    Long Covid in the media and social media 2023

    Maybe it's only hard to solve because it goes against established wisdom and the right idea appears as nonsense. A way to make progress in such a situation might be to rely less on conventional wisdom and go back to old school methods of doing science which involve more experimentation and...
  7. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    Acyl glycine fatty acid metabolites were the only compounds that stood out in ME/CFS patients. Acyl glycines are altered specifically in disorders of branched-chain amino acid metabolism and fatty acid β-oxidation. The mitochondrial acyltransferase, glycine N-acylase, is expressed in liver and...
  8. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    The other organ that seems like it could be relevant here would be the kidneys.
  9. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    The liver being the hub of metabolism in the body does seem interesting in this context of a lack of response to exercise in many metabolic pathways.
  10. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    A failure to excrete toxic metabolic byproducts generated during exertion would fit with the poisoned feeling that many patients can relate to. The assay used in this study doesn't detect small molecules. So there could be an accumulation that's not visible in the analysis. (it's also showing...
  11. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    What kind of problem could be causing such drastic changes in a wide range of metabolites? Is there a body wide "rest, repair and recover" signal that is broken in ME/CFS? It seems to make sense that people so affected would have to rest a lot because they are gaining much less recovery from...
  12. Hoopoe

    Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue..., 2023, Guo,Lipkin et al

    I am interested in improving my gut health but don't know what to do. My diet fairly healthy and varied already.
  13. Hoopoe

    Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients 2023, Glass, Hanson et al

    There are some neurological diseases that result from an inability to properly repair damage to the muscle due to a defect in some extracellular matrix protein. It makes me wonder if there is a kind of ME/CFS where something similar occurs, but maybe not specifically in the muscle. Having read...
  14. Hoopoe

    Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of CFS 2023 Chen et al

    I suffered from depression in the first years of the illness. I think it had a lot to do with my life falling apart, people not believing me, people demanding I push through, repeated crashes. Despite this I would likely regard a diagnosis of depression as being a harmful misdiagnosis, even if...
  15. Hoopoe

    Central Sensitization and Chronic Pain Personality Profile: Is There New Evidence? A Case-Control Study 2023 Lopez-Ruiz et al

    I think here's how this whole thing actually works: In chronic illness, the body is already burdened by the illness and has little capacity to tolerate further stress. So the patients become more risk averse, avoidant, less confident, and less interested in taking on difficult tasks. It's a...
  16. Hoopoe

    Hypnosis and hypnotherapy (also Rapid Transformational Therapy)

    Things like tarot or ancient oracles probably worked not because of supernatural things occurring, but because they gave the person a riddle or a message requiring interpreation that led to a the person seeking advice to spend time thinking about the problem (maybe from a different angle) and...
  17. Hoopoe

    Hypnosis and hypnotherapy (also Rapid Transformational Therapy)

    I think that all these techniques are probably capable of changing one's thoughts, motivations, perceptions, and therefore cause good or harm. They're just being marketed as being especially good at it, as extraordinary, and presented as something that people need to solve their problems. The...
  18. Hoopoe

    Hypnosis and hypnotherapy (also Rapid Transformational Therapy)

    One could use many ways to change one's perception of things and it's something very ordinary. To me it seems that you point to an unusual way (hypnosis) of doing a very ordinary thing that humans do every day in small and large ways. One day I decided I wanted to quit consuming sugar and...
  19. Hoopoe

    Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

    Falling to my knees (or worse falls) from orthostatic hypotension was also present relatively early, although I don't remember any such events in the first year. Mild orthostatic hypotension is considered normal in my family so that I can't remember such events in the first year might just mean...
  20. Hoopoe

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

    "and avoid counter attitudinal sources" I laughed.
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