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  1. Hoopoe

    How would an Average pwME/carer (no biology knowledge or access to S4ME) be able to tell when a mechanism has been discovered vs bio “memes” and hype?

    On its own it's not enough. But if there is apparently solid evidence replicated in many different contexts and society still does not believe it it could mean that there are problems with the quality of the evidence that I can't spot.
  2. Hoopoe

    How would an Average pwME/carer (no biology knowledge or access to S4ME) be able to tell when a mechanism has been discovered vs bio “memes” and hype?

    The PACE trial was superficially credible to many professionals. That shows one cannot rely on prestigious journals, or the fact that many professionals believed the results. I guess the only way to be reasonably certain that something is real if the idea/claim is widely supported by society...
  3. Hoopoe

    Functional Somatic Disorders in Individuals With a History of Sexual Assault 2025 Jacobsen et al

    Or maybe it is the other way around, that people who are in poor health are more likely to experience sexual assault because of the vulnerability that this represents. Predators pick on the weak and vulnerable. Illness doesn't begin with a diagnosis and subtle symptoms can be present years...
  4. Hoopoe

    Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID... , 2025, O'Connor et al.

    I don't need a person that tries to assume the role of benevolent authority figure that explains my feelings, my levels of stress and its presumed causes, how to manage rest, etc. Because the advice is worse than my own, the interpretations are often very wrong, and I can ask myself when I can't...
  5. Hoopoe

    Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID... , 2025, O'Connor et al.

    Clearly the fact that long covid patients are normal human beings that suffer from stress and worries is an unusual phenomenon that must be studied further.
  6. Hoopoe

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    We should separate receipt of disability benefits from diagnosis entirely. Diagnosis should be purely about trying to understand what is wrong and how to best manage it. These horrible dynamics come in part from diagnosis being required for receipt of disability benefits and other kinds of...
  7. Hoopoe

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    It's all a reflection of how patients are treated by society. Saying I feel shitty and don't want to do this thing isn't accepted. You just get labelled as lazy, lacking willpower or being depressed and then bullied or pushed around. Then you feel even worse and it also interferes with the rest...
  8. Hoopoe

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    I can often tell very quickly if a person understands ME/CFS or at least fatigue. Immagine going to a professional to solve a problem and after 30 seconds understanding without any doubt that the other person has a false mental model of everything you just told them. Inconceivable? No, as...
  9. Hoopoe

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    Human beings tend to hold beliefs that feel good and give them strength. The physiological explanation is a defense against disbelief, the enormous injustice this represents, and the small aggressions that patients are subject to. It's also a reaction to desperation and lack of control. If the...
  10. Hoopoe

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    I remember a turning point where I began experiencing episodes of exhaustion, malaise, poor sleep. I consider that the onset of clinically significant illness, but I believe that 1-2 years before that, I was already showing subtle symptoms. The most important symptom was, occasionally and...
  11. Hoopoe

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    What is Ryback's work showing? The same two age peaks or something more? What do these two age peaks suggest? What are the hypotheses on the reason for the peak in adolescence? Brain maturation associated with becoming an adult? Sex hormones? What other illnesses show two age peaks?
  12. Hoopoe

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    We don't know which method of selecting patients gets us the closest to a pure cohort. The strength of disease signals that emerge from each individual study can tell us something about how good the patient selection was but we don't know what exactly is being selected for. An inconsistency...
  13. Hoopoe

    Book - Psychology's Quiet Conservatism, 2025, Brian Hughes

    This sounds very interesting and aligns with my impressions. I wonder if the problem with unreliable, biased studies in psychology (and other fields) is the result of desire or pressure to conform to the values mentioned by Hughes. In this interpretation, the obstacle to doing good science is...
  14. Hoopoe

    Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with [ME/CFS] and Post-Acute Sequelae of COVID-19, 2025, Berardi et al

    Maybe riding a bicycle is a form of exercise that is better tolerated than others, due to the hemodynamics? It is something that has surprised me when I did a stress test on an ergometer. Walking seems like it would cause greater orthostatic stress than cycling. Maybe the stronger use of leg...
  15. Hoopoe

    Chronic Fatigue Syndrome: A Moral Exploration of Illness and Accountability, 2025, McMurray

    Presumably some prejudice against the illness stems from confusing descriptions of exertion intolerance with unwillingness to tolerate the stress of ordinary activities of daily living. If the patient, before describing their intolerance of exertion, does not specify the corresponding activity...
  16. Hoopoe

    Pain Catastrophizing and its Domains Significantly Impact Rheumatoid Arthritis Disease Activity, 2025, Currado et al

    Horrific testimony that we live in a society where expressing in how much pain you are is (almost?) considered a psychological disorder, at least by some. The expression of pain is of course a request for help. Labelling requests for help a dysfunctional behaviour is disturbing. What does this...
  17. Hoopoe

    Chronic Fatigue Syndrome: A Moral Exploration of Illness and Accountability, 2025, McMurray

    Isn't that how psychosomatics was once? That's not what it is nowadays in my opinion. A part of it is intended for patients as customers. Tell them whatever they like to hear and take their money. At the institutional level it's about reducing costs, the burden of patients on society, etc...
  18. Hoopoe

    Chronic Fatigue Syndrome: A Moral Exploration of Illness and Accountability, 2025, McMurray

    I see that as consistent with what I said. In the context of insurance and welfare it is about disability benefits. In other contexts, it is about avoiding responsibility in other ways. The psychosomatic narrative is also used to get patients to complain less about how horrible the disease is...
  19. Hoopoe

    Chronic Fatigue Syndrome: A Moral Exploration of Illness and Accountability, 2025, McMurray

    It seems fairly clear to me that one of the goals of the psychosomatic ideology is to be a tool to justify withholding financial support from patients. That's why in the psychosomatic ideology, ME/CFS must not be a chronic illness, but something treatable. The goal is to create barriers to...
  20. Hoopoe

    Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)?

    The symptoms are not subtle, but describing how I felt was difficult. If I remember right, I usually said that I felt unwell and was too tired and had not slept well. It took me about a year to recognize the relationship between activity and delayed worsening. Before that, it felt like I was...
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