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  1. Hoopoe

    "Too tired to teen" in The Art of Paediatric Medicine Beyond the Evidence Base: Clinical Pearls from Experienced Clinicians, 2025, Lubitz

    But graded exercise IS the burst preceding the bust. The point is explicitly to get the patient to push into the symptomatic zone and stay there to habituate themselves more and more to PEM, in the misguided idea that PEM is merely a state of distorted perception of bodily sensations that can be...
  2. Hoopoe

    Is ME/CFS something to do with Butyrate?

    What I've understood so far: BTN3A2 is not directly involved in binding phosphoantigens. Instead it "helps" BTN3A1 to do that. BTN3A1 is part outside, part inside the cell. The inner part binds phosphoantigens. The outer part changes upon binding and BTN3A2 ensures the right presentation. The...
  3. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Yes, the situation can be extremely bad. Being depressed due to genuinely bad circumstances is different from being depressed for no apparent reason (the latter implies that there is an underlying illness that is directly causing the poor mood). Improving the circumstances is effective in...
  4. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    In my experience, the illness in, combination with lack of support and misunderstanding, can easily lead to a lack of pleasant experiences. This deprivation appears similar to depression. I think it would be more accurate to describe it as getting used to having too few good things in life. One...
  5. Hoopoe

    Sleep problems in ME/CFS - discussion thread

    Highly abnormally unrefreshing sleep, on some mornings and with no apparent cause, preceded my ME/CFS. I suspect that at this point I was already suffering from ME/CFS, but that the only symptom that could emerge above the subclinical threshold was unrefreshing sleep as part of a subtle form of...
  6. Hoopoe

    Sleep problems in ME/CFS - discussion thread

    For me, excessive activity during the day leads to disturbed sleep. The other day I did a very long bike ride and then couldn't fall asleep for hours. My nervous system simply couldn't calm down, in an unpleasant way. It felt like the exercise had stirred up something in the body. Noise during...
  7. Hoopoe

    What the concept of psychosomatic disorders really is

    Psychosomatic disorder is a defense by the medical system against health problems that it cannot deal with. What it really means is "undesirable case". Labelling these problems as psychosomatic has the function of removing patients from the system or at least marginalizing them into a...
  8. Hoopoe

    Do you have fever as a part of PEM?

    I think it's not detecting temperature conductivity. The conductivity influences the rate of heat transfer to your body. The amount of heat materials can store also varies and this plays a role as well.
  9. Hoopoe

    Life has less meaning without work, but most work would make me sick

    I never had much interest in math, perhaps because it was taught to me with no focus on real applications. When I started programming math became a useful tool, and it also became more important to be able to communicate and understand others. I don't particularly like math per se, but math can...
  10. Hoopoe

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    A peripheral neuropathy could be described as exaggerated/false/distorted signals reaching the brain. When I spent time visiting SFN forums, it was obvious a portion of patients had PEM and could easily meet diagnostic criteria for ME/CFS. But the general sentiment was that ME/CFS was something...
  11. Hoopoe

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    Re. orexin. It is a neuropeptide. There are over 100 known neuropeptides in the human brain and the expectation is that more will be discovered. Since they affect so many different things, including sensory perception, regulation of the vascular system, metabolism, sleep, they seem potentially...
  12. Hoopoe

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    One problem we have in ME/CFS research is that we agree exertion and activity of any kind can cause PEM, but it's hard to define what exertion and activity means. Could the "exertion" that causes PEM be excitement, and eventually, overexcitement of the nervous system? Any physical activity, any...
  13. Hoopoe

    A hypothesis involving maintenance and restorative processes in ME/CFS

    I doubt we have evolved to have PEM to deal with a specific problem. I think the body senses that something is wrong and in its repertoire of responses there is only something similar to a sickness response. Some of the symptoms will be caused by the dysfunction, some by the attempt to restore...
  14. Hoopoe

    “Have you considered that it could be burnout?”—psychologization and stigmatization of (...) long COVID or post-COVID-19 vaccination syndrome, 2025,

    The system is blind to the harm it benefits from. There is a social norm that says people who are sick must be cared for. The psychologization allows people to violate that rule without having to face the negative consequences.
  15. Hoopoe

    DecodeME in the media

    Just brilliant. An "expert" that believes GWAS don't lead to better diagnostics and treatments.
  16. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Is what's causing PEM activity of the brain in excess of what it can tolerate due to some problem at the synapses? Is there any indication that glutaminergic synapses are playing a role in ME/CFS? What's the similarity between autism and ME/CFS?
  17. Hoopoe

    Do you have fever as a part of PEM?

    Fever as recurring symptom of ME/CFS was reported by 18% of patients in one study. The only temperature abnormality I've noticed is feeling of low body temperature on days where I wake up feeling particularly unrefreshed. Also sometimes the inside of my head feels a bit too warm.
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