• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. mango

    General ME-related news from Scandinavia

    Excellent article in the Swedish newspaper DT today :) https://www.dt.se/logga-in/26-arige-andreas-lever-med-den-kroniska-sjukdomen-me-cfs-min-kondition-existerar-inte Don't miss the 0:35 second long video on their Facebook page: https://www.facebook.com/dtnyheter/videos/1485942044776794/...
  2. mango

    The Swedish Parliament supports motion about targeted ME/CFS research

    A new one, October 2017. Very similar to the previous one, this one is also asking for CSS research :( https://www.riksdagen.se/sv/dokument-lagar/dokument/motion/erkannande-och-stod-till-patienter-drabbade-av_H5021267 Google translate, English...
  3. mango

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    I was able to download and open the documents without problems. Thank you so much David Tuller, and everyone else involved!
  4. mango

    General ME-related news from Scandinavia

    Hvordan kan vi bruke PACE-studien? https://www.dagensmedisin.no/artikler/2017/09/09/hvordan-kan-vi-bruke-pace-studien/ Google translate ("How can we use the PACE study?")...
  5. mango

    "Unrest" updates

    @Joh So bittersweet, beautifully expressed :hug:
  6. mango

    Olli Polo (Finland) in trouble for treating PWME

    Valvira vei CFS-väsymysoireyhtymään erikoistuneelta lääkäriltä toimiluvan - potilaiden omaiset hädissään http://www.iltalehti.fi/kotimaa/201709042200370930_u0.shtml Nyt puhuvat Valviran hyllyttämän CFS-lääkäri Olli Polon potilaat: "En pysy hengissä ilman sitä hoitoa"...
  7. mango

    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    This has a very strong smell of Fink (see for example page 31 here) and the TERM model (The Extended Reattribution and Management Model, developed by Fink et al) used in Denmark. See also this website (Google translate, English), which has a critical view on Fink & Term...
  8. mango

    My doctor won't take me seriously

    Oh, I'm sorry, I can't remember reading your earlier posts so I didn't know you haven't been diagnosed. My apologies! I'm in Sweden too, so yes I am all too familiar with the problems... In my case it took 7 years before I got diagnosed (for a long time I was wrongly diagnosed with recidiv...
  9. mango

    My doctor won't take me seriously

    You could tell him that you "will think about it", but that you need more time in order to read up on the research on ME/CFS and SSRIs and the risks involved etc first, because you want to make an informed decision. That will buy you some more time, hopefully. And if you're lucky, maybe he has...
  10. mango

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    The BPS lobby in particular has been studying and publishing papers on personality and personality disorders in people with CFS for several decades now... And there is still no evidence. I can't believe we're actually still having this discussion... Here's an article by Jörgen Jelstad, well...
  11. mango

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    :lol: I just want to mention, for the sake of transparency ;) that the audio I recorded was a bit choppy, so it's possible that I might have made a slight mistake when transcribing. It is possible that what she said was "chocolate and biscuits". It definitely sounds like "chocolate biscuits" to...
  12. mango

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    I believe it's very important to also listen to and consider what Myhill is saying about us, when she's not talking to us, in order to get a more complete picture of what she's like as an "advocate" for us and our disease. Here are some quotes transcribed from her talk at the Abundant Energy...
  13. mango

    Young Leader on the Road to Recovery and Helping Others

    Was it Maureen Hanson, at the OMF symposium?
  14. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Here are some of them: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Alan%20Light
  15. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Alain Moreau's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Alain%20Moreau
  16. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Wenzhong Xiao's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Wenzhong%20Xiao
  17. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Ron Davis's slides: http://s1377.photobucket.com/user/greenmango/library/OMF Symposium 2017-08-12/Ronald W Davis
  18. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Mark Davis's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Mark%20Davis
  19. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I could email them to you if you'd like? ETA: Is everyone else having problems accessing them too?
  20. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Alan Light's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Alan%20Light
  21. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Robert Naviaux's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Robert%20Naviaux
  22. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Chris Armstrongs slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Chris%20Armstrong
  23. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Some of Maureen Hanson's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Maureen%20Hanson
  24. mango

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Here are some of Jonas Bergquist's slides: http://s1377.photobucket.com/user/greenmango/library/OMF%20Symposium%202017-08-12/Jonas%20Bergquist
  25. mango

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    A Swedish ME/CFS center published a press release about the study today... http://www.mynewsdesk.com/se/bragee/pressreleases/genombrott-i-forskningen-om-me-slash-cfs-2098665 Google translate, English...
  26. mango

    Register now for livestreaming of Stanford/OMF Community Symposium August 12th!

    Yay! I'm super grateful and excited! Offering a livestream of an event like this is such an amazing thing to do, so very thoughtful, generous and brilliant! Can't wait! :nerd:
  27. mango

    Pediatric Primer

    I can't help thinking, yet again, that "if" is most often a much better choice of word, than "when", in contexts like these. To me, it kind of reads as if an improvement is to be expected. As always, thanks a million @Dolphin for all your phenomenal work, sharing all these quotes and your...
  28. mango

    Pajediene et al: Sleep patterns among patients with chronic fatigue: a polysomnography-based study

    Here’s a bit more to read, for those of you who would like to know about some of the underlying problems of this study, and 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 collected the data...