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  1. Evergreen

    Help for sound sensitivity

    Might be of interest: https://www.s4me.info/threads/noise-reduction-acoustic-vents.37011/
  2. Evergreen

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Might be of interest to people on this thread: https://www.s4me.info/threads/noise-reduction-acoustic-vents.37011/
  3. Evergreen

    Noise reduction: acoustic vents

    After a huge leak made it necessary, we did up the rooms I live in. I found “acoustic vents” and thought others with noise intolerance and ventilation holes in their external walls might be interested. Noise intolerance is a big issue for me, has been since day 1, and remained so even when...
  4. Evergreen

    Lying on a sofa

    Yeah there are other options too that would be much more affordable but just wouldn't have worked in our room/house. You can have a headboard hung on the wall. So you could have a bed with a regular headboard to support your most common position, and then a matching headboard on the wall for...
  5. Evergreen

    Lying on a sofa

    PS Oh and physios suggested a pillow under my knees (or between when on side) when I had low back issues.
  6. Evergreen

    Lying on a sofa

    You’re right to seek a physio’s advice. Hope you get someone good. My understanding is that it’s best if you can look at the TV/window/whatever you look at most head on, ie not on your side but on your back. And that changing your position is important eg being able to turn onto either side...
  7. Evergreen

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    I think the only two I might have marked myself down on at that time would have been 52 (TV) and 54 (concentrate for 2 hrs). But whether or not I marked myself down would have depended on how well I was pacing. To put it another way, I might have scored better on this section when I stopped...
  8. Evergreen

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    I like that they consulted patients so much. I think I will submit this form when next being assessed for social welfare. It's a pretty quick way of conveying inability to work at all. One of the things I would change is the gulf between 0 (I cannot do this) and 1 (I feel pants for at least 3...
  9. Evergreen

    NICE and pain

    Doctors have also been found to underestimate the pain of black people. https://www.aamc.org/news/how-we-fail-black-patients-pain
  10. Evergreen

    Thesis Distress and coping in ME/CFS: Understanding the role of perfectionism and self-compassion, 2022, Houston

    What a horrific thing for that person to say. Horrible that people with ME/CFS who aren't white face that kind of racism on top of all that comes with being ill. And demonstrates the harm that comes from these personality stereotypes that many clinicians like to peddle about people with ME/CFS.
  11. Evergreen

    Efficacy of daratumumab in refractory primary Sjögren disease Nocturne 2023

    Ooh, my always-positive-speckled-ANA just perked up. Might this be one for Fluge and Mella?
  12. Evergreen

    Information leaflet on ME/CFS and children/young people either for patients or for doctors?

    Yeah, that's where I'm coming from. I think GPs would be more likely to read it without the "excellent". They won't read it because patients think it's good, indeed, that will be off-putting to some/many. The ones who read it will read it because at a glance they can see that it's a decent...
  13. Evergreen

    Information leaflet on ME/CFS and children/young people either for patients or for doctors?

    Woo hoo! I think what you went with looks great, and you really made it tempting to look into it more. I'd probably have left out the "excellent", just because some will baulk at patients daring to judge the value of articles, but it really is pretty excellent isn't it? Hope someone was...
  14. Evergreen

    Information leaflet on ME/CFS and children/young people either for patients or for doctors?

    How about the first page of this paediatric primer on one side and judiciously chosen excerpts from it on the reverse? Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (frontiersin.org) Or the Clinical Diagnostic Worksheet within it?
  15. Evergreen

    All-or-Nothing Behavior and Catastrophic Thinking Predict Fatigue in Inflammatory Bowel Disease: A Prospective Cohort Study 2023 Moulton Chalder et al

    A commonly hypothesised pattern is boom-bust. The PACE crew found that 30% of PACE participants showed what they considered a boom-bust pattern on accelerometer data. Here are a few details from King E, Beynon M, Chalder T, Sharpe M, White PD. Patterns of daytime physical activity in patients...
  16. Evergreen

    Functional neurological disorder: new subtypes and shared mechanisms, 2022, Hallett, Dworetzky, Stone et al

    About this bit quoted by @Art Vandelay above from Jon Stone's website about Vogt's recovery stories Have they? I was surrounded with them. Bombarded by tales of people doing the same things as me and just having different outcomes. One of the most dispiriting experiences I had was reading...
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