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  1. Evergreen

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

    Yep, that's what I was thinking too - some of us draft something, people who are interested can look at a draft, give comments, and we keep drafting till we're happy. Then depending on the topic, we show it to outsiders and see what they think, and keep going till it's as good as it gets...
  2. Evergreen

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

    Are you the only doctor pushing back on some of this stuff out there in the real world? If so, it must be desperately frustrating. I think CS has pushed back on cervical instability, but is he perhaps on board with some of the others? Would it be worth you talking with him about what you're...
  3. Evergreen

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

    I agree with @Jonathan Edwards that there is a problem with some patients broadcasting nonsense. But I agree with @Utsikt that most of that nonsense originates with doctors, and/or emerges from the vacuum. If we had better information coming from doctors, that was backed by patients...
  4. Evergreen

    Cold or PEM?

    Ha ha! I did this a few years ago. My carer B was still testing positive but had to start looking after me as carer A was out of the country. Carer B had had mild symptoms and they had passed, but still, I wasn't thrilled to be exposed to someone testing positive. So when I started feeling...
  5. Evergreen

    Cold or PEM?

    PS This will not be relevant for you if you tapered off your anti-depressants very gradually, but flu-like symptoms are listed as ones that can occur when anti-depressants are discontinued: https://www.health.harvard.edu/diseases-and-conditions/going-off-antidepressants...
  6. Evergreen

    Cold or PEM?

    Ah, the eternal question! As others have said, it's just a wait-and-see situation. It will become clear, or clearer, either because the symptoms reveal themselves to be unequivocally those of a cold or flu, or as @Trish says, others in your house will get it from you. Or not. The good news...
  7. Evergreen

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

    Speaking of oestrogen, it does rise in males as well as females during puberty, though not nearly as much, and then stays steady for males, while jumping around a lot for females. That's if this preprint is robust "Estrogen Hormone Is an Essential Sex Factor Inhibiting Inflammation and Immune...
  8. Evergreen

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

    My post followed on from Jonathan's: My understanding is that if the second peak in males is real rather than an artefact, then we can rule out changes in hormones as a critical driver, because males don't have dramatic changes in hormones at that age in the way that women do. So if the second...
  9. Evergreen

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

    So if the second male peak is real, would we have to argue that the second peak being stronger for females is because of differences between the sexes' immune systems as they encounter infections, perhaps from children? Or are there other explanations?
  10. Evergreen

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

    On the general thread, @Russell Fleming highlighted a study Bakken co-authored - Collin et al. 2017 - which found increased healthcare use long before diagnosis. While there are a number of possible reasons for that, I think this gets more interesting with increased awareness of a potentially...
  11. Evergreen

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

    Good to have a thread for this paper. I wonder should the two age peak thread @SNT Gatchaman helpfully linked to above be merged with this one? Bakken et al.'s main finding was: Thought it would be useful to have Bakken et al.'s figures here, for people who cannot look at the paper. I've...
  12. Evergreen

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

    When I started GET, my ME/CFS was mild. I was still doing a fair bit of walking, e.g.. to and from (part-time) work, within work and going for the odd walk. I didn't cycle at all. My GET started with 15 mins of walking, immediately followed by 5 mins of cycling an exercise bike (a recumbent...
  13. Evergreen

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

    I've argued against a diagnostic questionnaire throughout the thread. So we agree, none of this would arise from a questionnaire that tries to aid diagnosis. You do studies like Moore et al. (linked above), or Jones et al. 2011 (linked further above) where you actually expose people to...
  14. Evergreen

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

    Gotcha. I think it's necessary because relying on patients' impressions and clinicians' impressions is not enough - too variable, too vulnerable to bias - and because of what has gone on in the last few years: Awareness of ME/CFS has risen because of long covid PEM started being talked about...
  15. Evergreen

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

    Yeah, the DSQ results reported in table 4 of Kleber et al. (above) include during and after and "after" is not defined, so people could be describing different things but they will look like they might be the same. Against that, Hanson's group did a 2-day CPET study where symptoms rise...
  16. Evergreen

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

    What I'm advocating is studies to find out what post-exertional phenomena look lke in ME/CFS vs other diseases so that we might be able to describe PEM in a more accurate way, or define what we mean by PEM in ME/CFS. So I'm going back a good few steps from the idea this thread started with...
  17. Evergreen

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

    And accompany it with education of their family, hospital staff and the wider public that they just have a lower pain tolerance than the average population, and can be safely ignored when they say they are in pain.
  18. Evergreen

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

    There are a lot of things get repeated so many times that everyone believes them, but may not actually be true. I'd like to know what's actually true about PEM. Regarding whether we actually have evidence to suggest that delayed onset is the key feature of PEM in ME/CFS, I read this sentence...
  19. Evergreen

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

    Catastrophically bad. And a multicentre study with a lot of authors, so this may be representative of rheumatology throughout Italy. They're working their way through all of the rheumatological disorders, it seems: How on earth did it get published? I can only hope that some...
  20. Evergreen

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

    The reason I don't think a questionnaire like this would help doctors diagnose ME/CFS is because the ones who don't diagnose it don't (not) do so because they don't know about PEM. They're not struggling to distinguish between PEM and DOMs or normal fatigue after exertion. They don't diagnose...
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