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  1. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Paul Garner has shared Live Landmark's opinion piece on twitter with the following text: Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process. Nice should hang its head in shame #CFS
  2. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Brian Hughes with excellent comments to the Landmark opinion piece on twitter:
  3. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Yes, they don't translate opinion pieces, but you can send an opinion piece to them in English or translate your Norwegian opinion piece into English and "try your luck". I can't recall having seen opinion pieces before on their English platform (but then again, my memory is bad so it might have...
  4. Kalliope

    News from Scandinavia

    Sten Helmfrid says on twitter that English translation is on its way
  5. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    This is what they say about which opinion pieces are translated to English and published on their English platform. But I'm pretty sure there's an editorial decision as well and that not everyone who wants their text published will get a yes from them. Also notice that Flottorp from the...
  6. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    It has now been translated into English. Which is weird.. They usually don't translate opinion pieces as far as I know and why on earth would they prioritise the opinion piece by some in alternative treatment rather than prof. Tronstad's piece? The British guideline for CFS/ME is the result of...
  7. Kalliope

    BPS attempts at psychologizing Long Covid

    This article is from last week, but just saw Medscape sharing it on twitter. Am a bit surprised to see this in Medscape, and with no mention of PEM in some long Covid patients. Bolding is mine. Medscape 'It's Deconditioning, Stupid': Exercise Limitations After COVID-19 Infection Commentary by...
  8. Kalliope

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

    I understand and share your frustration. But there's also a point being made, if Long Covid is being confused with the collective challenges of the pandemic that we all feel in a more or less degree. I see a lot more use of the word "fatigue" now in Norwegian media, which until now has been...
  9. Kalliope

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

    I don't think this has been shared yet. It was published four days ago. Wired To Help People With Long Covid, Scientists Need to Define It quotes: There is a long history of new diseases being brought to medical attention by patients—often by women, who between monthly menstruation and...
  10. Kalliope

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

    The Mainichi Japanese youths suffering fatigue from aftereffects of COVID infection Quotes: A 16-year-old first-year high school student from Aichi Prefecture whose family is believed to have been infected with the coronavirus in May last year has also been suffering from symptoms including...
  11. Kalliope

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

    New long Covid piece by Ed Yong with mentions of ME: The Atlantic What Medicine's Own COVID Long-Haulers Have Faced by Ed Yong quotes: For other medically trained long-haulers, the skepticism of their peers—even now, despite wider acknowledgment of long COVID—has “been absolutely shattering,”...
  12. Kalliope

    Long covid after breakthrough infection

    David Putrino, Nisreen Alwan, Petter Brodin and Akiko Iwasaki are among those interviewed for the article Nature Do vaccines protect against long COVID? What the data say Quote: Putrino has noticed that even being fully vaccinated doesn’t necessarily protect against long COVID. Many of his...
  13. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Two new opinion pieces rebutting the one from the 24 health professionals who defended GET/CBT. The first is from board leader of the Norwegian ME Association, Linda Bringedal. She writes: quotes: Nice shows that they largely take patients seriously, by removing treatments that the patient...
  14. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    The debate in the newspaper Aftenposten continues with another round from the professors Rolf Rønning and Ola Didrik Saugstad with a great reply to the 24 health professionals who objected against the NICE guideline. ME-debatten: Vi må slutte med det som ikke virker The ME debate: We have to...
  15. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    New tweet today from Paul Garner: - Nice lost the plot with GRADE with ME/CFS, according to the people that actually developed the methods: "a disastrous misapplication of GRADE methodology is the source of the problem". He has added this link to the tweet...
  16. Kalliope

    News from Scandinavia

    A big article about ME in the Norwegian local newspaper Stavanger Aftenblad. It is paywalled, so here's a summary: It features Sissel Sunde, ME sufferer and patient advocate who developed ME after a Dengue infection six years ago. She's tried 22 different treatments without getting better, and...
  17. Kalliope

    News from Scandinavia

    The Norwegian Public Broadcaster, NRK, writes about BII - Breast Implant Illness. The diagnosis is not recognised by WHO. Symptoms can be fatigue, loss of memory, rash, brain fog and joint pain. Several of the women with BII that NRK had been in touch with, had been diagnosed with ME or...
  18. Kalliope

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Paul Garner has shared the opinion piece on twitter with the following text: Somebody being honest about the perversion of the GRADE process by Nice on ME/CFS. We reported this in the BMJ. This story is yet to break
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