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  1. Midnattsol

    UK Government ME/CFS Delivery Plan consultation

    An example of this would be Wyller's recent work, and how the Lightning Process study at NTNU is presented. "We're using the Canada Criteria, see we're doing like that patients are asking and still they complain!"
  2. Midnattsol

    Media articles about endometriosis

    I wish we knew more about "normal" periods. I'm so sick of it being thrown around that pain, nausea, cramps etc. is "normal". There is a project at a Norwegian university on periods and exercise, and one of the women interviewed about it said she believed period problems was about mindset...
  3. Midnattsol

    News from Scandinavia

    :hug: We have been in and out of the yellow zone, but been spared from more or less all of it. Only some short bursts of real heavy downpour, and the national alarm system errors that have made phones ring extremely hard warning about catastrophes. That alarm is, to say the least, not for...
  4. Midnattsol

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    Though with all the take-downs of various depression questionnaires I'm not hopeful this is going to work. It's so frustrating.
  5. Midnattsol

    News from Scandinavia

    Not sure how much it is covered by the news other places, but the storm Hans is really creating havoc in Norway. There are lots of damage done, and multiple people/places have been evacuated. Such a situation is terrible enough for a healthy person, but being ill on top of that :(
  6. Midnattsol

    Coaching to Strengthen Critical Success Factors in Integrative Care for Chronic Fatigue Patients: The Patient Needs-Resources Model 2023,Araja et al

    Sadly the only lecturer we had that mentioned other reasons than laziness etc. for why someone might not be compliant was ill herself.
  7. Midnattsol

    News from Aotearoa/New Zealand and the Pacific Islands

    And having been told by healthcare professionals they will get better, there is a chance they will become aggressive to anyone who says anything else.
  8. Midnattsol

    News from Aotearoa/New Zealand and the Pacific Islands

    I think being told repeatedly since almost the start of the pandemic that this doesn't happen, and if it does it's not to "healthy, active, fit" people makes some want to make it clear that it absolutely does. I guess for many it's a new experience of not being believed, and even those of us...
  9. Midnattsol

    Trial Report Perceived cognitive impairment is related to internalizing psychopathology but unrelated to objective cognitive performance, etc., 2023, Finley et al

    When I did a neurocognitive test scoring in the 70+ percentile was considered normal. Depending on cognitive function beforehand, being at the 70 percentile could still mean cognitive impairment :facepalm:
  10. Midnattsol

    A qualitative longitudinal study of a health psychological group intervention for patients with ME/CFS, 2023, Keurulainen et al

    Not an objective one, but measuring quality of life over time ("over time" being very important as to avoid getting people who are only happy to have received "the tools" to help them cope being very optimistic before the tools have actually been put into action to see if they work)
  11. Midnattsol

    A qualitative longitudinal study of a health psychological group intervention for patients with ME/CFS, 2023, Keurulainen et al

    And more of what? Not all activities I find meaningful would necessarily show as increased activity or feet on the floor on an actometer or fitbit.
  12. Midnattsol

    Preprint Prevalence of long-term symptoms varies by using different post-COVID-19 definitions in positively & negatively tested adults:PRIME study, 2023, Pagen

    The global increase in sick leave make me think the "vast majority" is not as unaffected as they may seem. Same with the excess death data (which is unfortunately becoming much harder to use due to both covid death statistics becoming part of the norm, and a shift in demographics changing what...
  13. Midnattsol

    Preprint Prevalence of long-term symptoms varies by using different post-COVID-19 definitions in positively & negatively tested adults:PRIME study, 2023, Pagen

    Oh, this reminds me that a study at my university was looking for "healthy controls" for a study on hormones and blood pressure. Their main requirements for healthy (ie the only ones listed on the poster): Not have high blood pressure, and not use hormonal contraception methods. As we know...
  14. Midnattsol

    Preprint Prevalence of long-term symptoms varies by using different post-COVID-19 definitions in positively & negatively tested adults:PRIME study, 2023, Pagen

    I don't see how we are going to get good controls now. Not even for comparing number of covid infections. The only way I see to get controls would be that the generations after us are not infected. I have, as far as I know, not been infected by covid. Neither has my boyfriend. And by that I...
  15. Midnattsol

    Trial Report A multicenter virome analysis of blood, feces, and saliva in myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Briese et al.

    Celiac disease can present with fatigue and cognitive impairment without symptoms from the GI tract, even if the damage originates in the gut.
  16. Midnattsol

    SARS-CoV-2 infection and persistence in the human body and brain at autopsy, 2022, Stein et al

    Seeing that obesity and non-communicable diseases are common globally, also increasingly in the young, we need studies that look at this population. It encompasses a lot of people.
  17. Midnattsol

    How to report findings that sick people are more sick

    Not necessarily, but for example this quote that was shared in the thread: "A lower disability rate, better physical condition, and higher daily activity predicted lower fatigue levels. Thus, a suitable form of exercise should be found for MS patients, considering their functional capacity, to...
  18. Midnattsol

    How to report findings that sick people are more sick

    Inspired by the thread "Correlation of fatigue with disability and accelerometer-measured daily physical activity in patients with relapsing-remitting MS 2023 Luostarin et al" with this apt comment from @Trish This seem to be a common but not surprising finding in studies that look at...
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