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  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. Hoopoe

    Nobody I’ve been locked up with in a psychiatric hospital felt ‘proud’ of their illness, Eleanor de Jong, The Guardian, June 2023

    Sales of SSRIs reaching record levels because they're being prescribed for people who have all sorts of other kinds of life problems like poor housing, low wages, difficult health problems, lack of good living conditions, grieving the loss of a loved one and so on.
  6. Hoopoe

    A Unique Circular RNA Expression Pattern in the Peripheral Blood of ME/CFS Patients, 2023, Cheng et al

    On the function of NUPR1 This suggests circRELL1 is an indicator that cells are undergoing significant stress Edit: or maybe that sensitivity to stress signals is being increased a lot.
  7. Hoopoe

    Gentle(st) stretching routine

    In my opinion a good approach is to try different things and create your own routine based on what feels good for you. If it makes you feel good, then you will want to do it regularly and as we all know the challenge is often sticking to these sorts of plans. So the goal should really be to feel...
  8. Hoopoe

    Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

    The premise of this paper is strongly at odds with my experience. In some ways, almost the opposite. The narrative is that of a patient that is caught up in a harmful medicalization, within a dominant biomedical world view. I think it would be be accurate to describe my first years as being...
  9. Hoopoe

    Limbic Perfusion Is Reduced in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2021, Xia Li et al

    I found this bit interesting because it's hard to predict, from how my body feels, how long I will be able to sustain an activity. I often feel better and more capable than I really am. This may also be the reason why pacing is hard and must be learned by experience.
  10. Hoopoe

    "Long COVID and Chronic Fatigue Syndrome Share Pathophysiology" by Anthony L. Komaroff, MD (NEJM Journal Watch)

    "ME/CFS" is the new name for CFS and for ME. CFS was the new name for ME.
  11. Hoopoe

    Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

    As is the case in hundreds of other diseases? :rolleyes: These other diseases mostly don't have a psychosomatics lobby group that is constantly trying to cast doubt on the reality of the disease. Maybe that is where the disbelief originates?
  12. Hoopoe

    Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

    I think what the authors and many others are doing is confusing cause and effect. When we are sick, the body adopts a survival program that is intended to give us the best changes to overcome the illness. We get tired to ensure we don't spend energy on non-essential tasks. We become risk averse...
  13. Hoopoe

    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    Looks very interesting. I would love to have a device that can track blood flow to the head. It would probably help me get treatment.
  14. Hoopoe

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Maybe the NIH is taking so long because they think that due to the controversy surrounding ME/CFS they need really solid evidence before making any claims. That's the wishful thinking on my part, which hopes that delays mean solid evidence.
  15. Hoopoe

    Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

    Truly effective treatments do not need this kind of marketing because it's easy to demonstrate in credible experiments that they work. (this kind of marketing refers to all the scientific, newspaper and opinion pieces published over the years, none of which seems to contain an experiment that...
  16. Hoopoe

    Cognitive Behavior Therapy, 2023, Chand et al

    Me too. Aren't these often the best and most authentic? It's tricky to talk about these things because there no clear definitions for the various concepts like thoughts.
  17. Hoopoe

    Cognitive Behavior Therapy, 2023, Chand et al

    I also do not experience my own cognition like that at all. I think there are indistinct cognitive processes that have little to not verbal or emotional component. These go on and when they reach a conclusion they can be expressed into well defined thoughts and emotions, like "it would be nice...
  18. Hoopoe

    Cognitive Behavior Therapy, 2023, Chand et al

    I also wonder how brain fog affects the impression that others have of us. If you have not enough energy to think and communicate properly, you're probably likely to appear to suffer from cognitive distortions. But these are not so much an ingrained false view of the world as a way to...
  19. Hoopoe

    Cognitive Behavior Therapy, 2023, Chand et al

    The ideology of CBT seems to be partially responsible for the testimonial injustice suffered by people with ME. The descriptions of our illness are interpreted as cognitive distortions and exaggeratedly negative, even self-destructive and the main cause of disability (which implies the degree of...
  20. Hoopoe

    Pacing - what do you do/how would you describe it?

    A good mindset for good energy management is to do things for fun and personal satisfaction. That avoids falling into the trap of becoming ambitious and setting goals to do and achieve more. Too much fun can also lead to overexertion. If the focus is on "how am I feeling while doing this, does...
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