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  1. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    The thought of being able to find genes/SNPs involved in the disease causation is very exciting.
  2. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    The odds of reaching the 20000 target seem good now. What does the DecodeME team think?
  3. Hoopoe

    Protocol Development of a digital biomarker and intervention for subclinical depression: study protocol for a longitudinal waitlist control study, 2023, Teepe

    Digital biomarker? Subclinical depression? waitlist control? Is this an attempt to reach the lowest possible standards? A bit like a dive in the Mariana trench to see how low you can go.
  4. Hoopoe

    Trial Report The Psychological Benefits of Forest Bathing in Individuals with Fibromyalgia and CFS/ME: A Pilot Study, 2023, Serrat et al

    The benefit of spending time in nature is real although I'm not sure if it has any meaningful effect on an illness. In a pine/cypress forest that I got to sometimes, the air takes on a new quality of being fresh. I suspect this effect could be due to antiinflammatory compounds released by the...
  5. Hoopoe

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Both, but the ones that will also receive funding seem more important. With support from researchers a lot more pressure could be exerted to influence the ME/CFS Lifelines study. For example to enforce the requirement of a clinical diagnosis of ME/CFS by doctors that the patient community can...
  6. Hoopoe

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    We need researchers to weigh in and tell us whether they agree with our concerns, and what they think could be done.
  7. Hoopoe

    Letter: Disrespectful language about patients with long COVID 2023 Pelosi

    It's the patients that should decide what is disrespectful behaviour towards them and what is not.
  8. Hoopoe

    Discordance between Adolescents and Parents in Functional Somatic Symptom Reports:... 2023 Hogendoorn, Rosmalen et al

    And by assumed they mean "we interpret things that way because it creates jobs for us". One could also make very different interpretations.
  9. Hoopoe

    Serum from Myalgic encephalomyelitis/chronic fatigue syndrome patients causes loss of coherence in cellular circadian rhythms, 2023, Wei et al

    I have a monoallelic frameshift mutation in the PER1 gene which is part of the the clock machinery that creates circadian rythms in the brain and peripheral tissues. My understanding is that it would not cause the serum to have the effect described here but might further worsen circadian rythms...
  10. Hoopoe

    An analogy to explain ME/CFS complexity: Three body problem

    A big factor is probably how rested patients are and how long ago the last significant exertion was. We already know that exertion causes significant changes (at least for a few days, maybe more) and if we don't ensure that all study participants are similarly rested it could introduce a lot of...
  11. Hoopoe

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Language that is intended to mislead readers with little expertise, and obfuscate rather than provide clarity, is so typical of psychosomatics. It works because the average person can't see obvious problems and will trust experts.
  12. Hoopoe

    Preprint Thermosensitivity of translation underlies the mammalian nocturnal-diurnal switch, 2023, Beale et al.

    From what I understood the liver has its own circadian rythm that is influenced by and influences feeding and fasting behaviour. I learned about this by observing how I could not handle skipping meals around 17:00 but could easily tolerate moving my dinner to 17:00 and not eating afterwards...
  13. Hoopoe

    The current state of ME/CFS research, and its prospects

    TORC1 is described as stress sensor. And it influences autophagy. At least one research group has reported abnormally elevated TORC1 activity, while at least one other group has reported abnormally elevated autophagy. I hope I got things right because I'm going from brain fogged memory. That's...
  14. Hoopoe

    The current state of ME/CFS research, and its prospects

    The pretense that LC is totally new is a way to get research done without upsetting people that are invested in trivializing and psychsomaticizing ME. To some degree, also without upsetting power structures. It would have been better if society had admitted that LC is often probably a form of...
  15. Hoopoe

    The current state of ME/CFS research, and its prospects

    Re. sodium. There was this study that found increased sodium content in ME/CFS muscle and the authors believe this is due to a dysfunction in the sodium-potassium pump (which transports sodium out of the cell). Maybe this has something to do with the reaction to sodium observed in the...
  16. Hoopoe

    The current state of ME/CFS research, and its prospects

    Some recent findings implicated abnormal autophagy in ME/CFS. Autophagy seems to fit with delayed PEM, the idea of cells being under major stress they can't handle (or maybe something wrong with stress signalling). This might be due to problems in the vascular system which would fit with...
  17. Hoopoe

    The current state of ME/CFS research, and its prospects

    My impression is that replication attempts and successes have increased. They findings seem much less "all over the place and unreplicated" as was the norm. The 2-day CPET research led to Systrom's findings which seem closer to the root of the problem. Metabolomics studies are becoming more...
  18. Hoopoe

    The current state of ME/CFS research, and its prospects

    To me it seems like some progress is clearly happening. We're seeing more marked abnormalities being published, and ones that fit with previously published research. It doesn't seem like almost only barely statistically significant findings are being published that don't fit into a bigger...
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