Search results

  1. mango

    News from Scandinavia

    SVT Nyheter Halland: Därför har Försäkringskassan svårt att hantera ME https://www.svt.se/nyheter/lokalt/halland/darfor-har-forsakringskassan-svart-att-hantera-me "This is the reason why Försäkringskassan (the Swedish Social Insurance Agency) has problems managing ME" They claim it's because...
  2. mango

    News from Scandinavia

    SVT Nyheter Halland: ME-forskaren: ”Det finns en strimma hopp” https://www.svt.se/nyheter/lokalt/halland/me-forskaren-det-finns-en-strimma-hopp ME-researcher says: "There's a glimmer of hope" Very short text + 1 min audio. Emeritus professor Anders Rosén mentions a few common comorbid...
  3. mango

    Help for sound sensitivity

    I, too, am using Peltor. I find the X5A very effective but, like Gecko mentioned, they do put a lot of pressure on the jaw and they are quite bulky too. I have another pair of Peltor as well: CE95, much less bulky and with less pressure, but they are not as effective so it's best to use them in...
  4. mango

    News from Scandinavia

    It's important to remember that the kind of "decision support"/guidelines they are talking about here (försäkringsmedicinskt beslutsstöd, FMB), were originally created in response to the increasing number of people on sick leave in the late 1990s and the beginning of the 2000s. In other words...
  5. mango

    News from Scandinavia

    Brilliant blog article about the importance of openness and transparency in the conversation about ME, written by an occupational therapist/pwME. In Swedish. Vi kräver att ALLT som kan göras också görs! https://livetsbilderblog.wordpress.com/2018/05/31/vi-kraver-att-allt-som-kan-goras-ocksa-gors/
  6. mango

    News from Scandinavia

    Expressen: ME-sjuka Camilla, 52, kämpade in i det sista ("ME sufferer Camilla, 52, fought until the very end") https://www.expressen.se/kvallsposten/me-sjuka-camilla-52-kampade-in-i-det-sista/
  7. mango

    News from Scandinavia

    Great talk (in Swedish) on POTS by Dr Artur Fedorowski, at an event last Wednesday hosted by the Ehler-Danlos Syndrome patient organisation in Lund, Sweden: Here's a written summary (also in Swedish): https://snoflinganblog.wordpress.com/2018/05/25/forelasning-om-pots/ Google Translate, English
  8. mango

    News from Scandinavia

    Expressen: Alma gick in i väggen när hon var 14 år: ”Jag saknar mitt liv” https://www.expressen.se/gt/alma-gick-in-i-vaggen-nar-hon-var-14-ar-jag-saknar-mitt-liv/ Alma experienced burnout at age 14: "I miss my life"
  9. mango

    News from Scandinavia

    Dagens Medicin: Utsatta patienter får inte träffa specialist ("Vulnerable patients are not allowed to see a specialist") https://www.dagensmedicin.se/artiklar/2018/05/23/utsatta-patienter-far-inte-traffa-specialist/ Paywalled. "Extremely high pressure forces ME/CFS specialist centres to say no...
  10. mango

    News from Scandinavia

    Fingers crossed! Alternative links to the same articles (easier to read and autotranslate): http://www.ugeavisen-esbjerg.dk/esbjerg/ME-sagen-Minister-tager-fat-om-ME-problemer/artikel/353513 http://www.ugeavisen-esbjerg.dk/esbjerg/ME-sagen-Et-lille-lys-i-moerket/artikel/353482
  11. mango

    Publications that show ME is biological

    Another favourite of mine is Mary Dimmock's (@Medfeb) book 30 Years of Disdain. I think it's absolutely fantastic and well worth a read :) Actually I'd say a 'must read' :) There are two versions, the shorter summary version is probably also a bit too long for a casual reader, but if there's...
  12. mango

    Publications that show ME is biological

    Another excellent source for you to use as inspiration if you'd like, is the website of Anne Örtegren's (@Anne O) ME/CFS newsletter: mecfsnyheter.se (There's a link to mecfsnyheter.se at the very bottom of Anne's final letter, the one that @Snowdrop suggested.) On the front page of the...
  13. mango

    Publications that show ME is biological

    @Snowdrop mentioned Anne Örtegren, @Anne O. Anne used to make super helpful factsheets (I used to help her). Maybe that could be an idea for you to look into? The documents are all in Swedish, but maybe you could take a look at a few of them (using Google Translate) and use them as inspiration...
  14. mango

    Mental health awareness week includes neurological conditions?

    The Swedish charity Hjärnfonden (The Swedish Brain Foundation) ran an ad in social media a few weeks ago. Their ad on Instagram consisted of an image, a text and a video that all explained that brainfog "is a stress-related mental health issue", called for "a friendlier work-climate" and the...
  15. mango

    Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls, 2018, Bileviciute‐Ljungar et al

    Some more context. Ljungar is -- in my opinion -- one of the most influential BPS proponents in Sweden, although she often describes herself as a having a "biomedical" view/approach. To give you an idea of what her view of this disease is, here's a telling example. She was the one behind the...
  16. mango

    Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls, 2018, Bileviciute‐Ljungar et al

    To give some context, here's another study by the same author: A comment I wrote a while ago, somewhere else: I think they are trying to say that the effect of CBT could be increased by adding a couple of "psycho-educative sessions of emotional awareness training", since CFS patients have...
  17. mango

    Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls, 2018, Bileviciute‐Ljungar et al

    (This is a comment I wrote a while back, somewhere else. I think it's worth repeating.) There are some major underlying problems here, and in all other studies using the same set of questionnaire data. I asked a well-informed friend of mine, who used to be a patient at the ME/CFS-centre that...
  18. mango

    Seminar in Sweden May 8th - Chronic fatigue and ME/CFS - what are the differences?

    They are doing it again, 13 September. This time in Göteborg (Gothenburg). https://magnetevent.se/Event/utmattningssyndrom-och-mecfs-nu-i-goteborg-20775/
Back
Top Bottom