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  1. Kalliope

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Røysumtunet is the first institution in Norway with an offer for severe ME patients. They accept patients from all over the country, but Bærum municipality rejects any cooperation with the institution and thus blocking this offer for severe ME patients in their area. Two doctors have written...
  2. Kalliope

    News from Scandinavia

    I agree. But it seems almost impossible to get that point across, so it might have been a way to remind people of the large majority left without help, instead of raising a new round of CBT debate.
  3. Kalliope

    (Coming) thesis: Tarjei Tørre Asprusten "Diagnosis of Chronic Fatigue Syndrome in Adolescents" - 2022

    Nina E. Steinkopf has written the following blog post about the dissertation providing more details and background: Doctoral dissertation casts doubt on ME Quote: By casting doubt on whether the symptoms of ME are objective or if it makes a difference in which diagnostic criteria that are used...
  4. Kalliope

    News from Scandinavia

    A great opinion piece by psychologist, author and ME sufferer Frøydis Lilledalen in the Journal for Norwegian Psychological Association. She writes about "the circle of pain". How she was taught that patients increase their pain and suffering by focusing on them. But nobody taught her that this...
  5. Kalliope

    Long Covid in the media and social media 2022

    NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses An interview with Meghan O'Rourke. There's also a 43 minute audio interview which I haven't listened to yet. Quote: The reason I [say] autoimmune diseases and chronic fatigue syndrome or myalgic...
  6. Kalliope

    Norway: Røysumtunet, a centre for severe ME patients

    I agree. It also wouldn't surprise me that if they have succeeded in providing proper care for severe ME patients, no noise, help with eating, few carers who are also knowledgable about ME and pay attention to reduce stimuli, help with pain and sleep, nothing for the patient to have to...
  7. Kalliope

    Norway: Røysumtunet, a centre for severe ME patients

    Dag Gundersen Storla, a doctor from Røysumtunet, who has many years of experience with ME and also runs a private clinic in Bærum Municipality, has today an opinion piece in the local newspaper Budstikka. He says that information about this institution now accepting severe ME patients has been...
  8. Kalliope

    Long Covid in the media and social media 2022

    DW News has made this mini documentary about Long Covid with people from India, Germany, Kenya and USA all talking about the same set of symptoms and struggles. The part from USA also includes additional struggles for people of color with Long Covid. One of the doctors interviewed, is Bettina...
  9. Kalliope

    Long Covid in the media and social media 2022

    The Sydney Morning Herald Inside a long COVID clinic, a chronic condition is revealed Quotes: Recognising the complexity of this new condition, Irving established a multidisciplinary team of specialists at the Royal Melbourne’s long COVID clinic, including psychiatrists, exercise physiologists...
  10. Kalliope

    Long Covid in the media and social media 2022

    A personal story about the desperate search for treatments New Scientist DIY treatments and clinical trials - one person's tale of long covid quote: Will these interventions work? Only time will tell. But like many other long haulers, I am willing to try anything. So, I find myself googling...
  11. Kalliope

    News from Scandinavia

    Opinion piece by civil engineer and ME patient Benedikte Monrad-Krohn in the medical newspaper Dagens Medisin quote: Although research on behavioral therapies has not differentiated between patients with and without PEM, the results are still interesting. Some argue that "it is the best we...
  12. Kalliope

    News from Scandinavia

    A feature article (paywalled) in the Norwegian newspaper Klassekampen titled: Missing: Emilie It's about 23 year old Emilie who suffers from severe ME. The article describes in detail her every day life and the battle against those who should be there to help. For instance when Emilie was...
  13. Kalliope

    Norway - series of articles about ME in the newspaper Klassekampen, 2022

    Post copied from the News from Scandinavia thread A feature article (paywalled) in the Norwegian newspaper Klassekampen titled: Missing: Emilie It's about 23 year old Emilie who suffers from severe ME. The article describes in detail her every day life and the battle against those who should...
  14. Kalliope

    Preprint Medrix: Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS - Helliwell, Tate et al -2022

    Spotted the paper in a tweet by prof. Kunst with the comment: Wow. This important new preprint demonstrates epigenetic changes in #MECFS patients during relapses/crashes. These patients showed "functionally important changes in their DNA methylomes that lead to compromised physiology".
  15. Kalliope

    Preprint Medrix: Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS - Helliwell, Tate et al -2022

    Preprint Medrix Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Helliwell A.M., Stockwell P.A., Edgar C.D., Chatterjee A., & Tate W.P. Abstract (242) Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is...
  16. Kalliope

    Suggestions of good sources on the background to the ME saga, PACE, etc. up to the new NICE guideline

    If you're looking for something newly written and short, just to get the headlines of the story, George Monbiot's article was a pretty great summary: https://www.theguardian.com/commentisfree/2021/jan/21/were-about-to-see-a-wave-of-long-covid-when-will-ministers-take-it-seriously
  17. Kalliope

    Front. Med Editorial: Current Insights Into Complex Post-infection Fatigue Syndromes ... ME/CFS & Beyond, 2022, Westermeier et al

    Editorial: Current Insights Into Complex Post-infection Fatigue Syndromes With Unknown Aetiology: The Case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Westermeier, Lacerda, Scheibenbogen, Sepulveda Conclusions In conclusion, this Research Topic collects further pieces of evidence...
  18. Kalliope

    Long Covid in the media and social media 2022

    National Geographic As long COVID cases grow, clues emerge about who is most at risk Quotes: Each risk factor was linked to specific long COVID symptoms. Those with autoantibodies, for example, tended to experience fatigue and respiratory symptoms. Type 2 diabetes was associated with the common...
  19. Kalliope

    JOSPT: Lessons from ME/CFS for Long COVID - 4 part series, 2022, Davenport et al

    JOSPT Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation by Todd E. Davenport et al Summary A combination of HRM and symptom journaling will best assist patients and clinicians to track...
  20. Kalliope

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Patient-doctor protesting loudly against humbug treatments. Best thing I've seen today :thumbup:
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