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  1. Ravn

    The ME Show

    Really enjoyed your interview @Trish. Your responses were thoughtful, considered and considerate – just like your posts here on the forum. Same goes for @Gary Burgess. Thanks to both of you.
  2. Ravn

    Patentscope: Prevention and/or treatment of chronic fatigue syndrome

    Interested to hear the views of the science-literate members on this one. Patent application is for a product containing oxalic acid and derivatives, of all things. Certainly different. Reminder for all you test-it-on-yourselfers: too much oxalic acid is highly toxic and there have been...
  3. Ravn

    UK 7 June 2018 | MSPs discuss ME treatment on Holyrood Live

    Very impressive performance with all the courage and endurance of a true champion @Emsho, and brilliantly supported by Janet and Chris. Thanks to you all. You looked exhausted towards the end, Emma, so look after yourself. Hope the knowledge of all our appreciation for your heroic efforts will...
  4. Ravn

    News from Scandinavia

    The article may have inadvertently given us a clue about what's really going on. One, it looks like some researchers are starting to play nicely together: Two, Wyller has not been invited to play: Conclusion: Wyller wants to be one of the in-kids but isn't; he's feeling left out. Anyone...
  5. Ravn

    News from Scandinavia

    Where does he get this from? Have there even been any comparisons looking at differences in biomarkers in Oxford versus Canada selected patients? What biomarkers is he talking about? Why did the journalist not challenge this unsubstantiated statement, given that the other researchers claimed...
  6. Ravn

    Deconstructing post-exertional malaise in myalgic encephalomyelitis/ CFS: A patient-centered, cross-sectional survey, Chu et al, 2018

    There's a lot of good stuff in here, especially how they describe PEM in the discussion section. But I do think they could have done more and better with their own study and method. They could have enrolled patients diagnosed via International consensus or Canadian criteria, not Fukuda...
  7. Ravn

    Deconstructing post-exertional malaise in myalgic encephalomyelitis/ CFS: A patient-centered, cross-sectional survey, Chu et al, 2018

    Properly defining PEM is extremely important – all too often it seems to get confused with plain exercise intolerance - so I appreciate the efforts by the authors. Unfortunately the article is too long for me to read in full so can't comment on how well they have achieved this but I was puzzled...
  8. Ravn

    The ME Show

    Thanks @andypants. I use the iTunes desktop app for Windows 10 and have finally figured out that you have to select Show in Store > The ME Show > Ratings and Reviews > Write a review. Frustratingly it's then impossible to tell if your rating and review actually went through because no reviews...
  9. Ravn

    The ME Show

    Excellent podcast, Gary. Managed to subscribe to it on iTunes (which I don't otherwise use) with the intention of rating and reviewing but apart from a drop-down menu choice of "loved" or "dislike" - obviously I ticked "loved"! - I can't find any other way to rate or review it. Any tips anyone?
  10. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Thanks @Cohen for posting that second ODT article. I couldn't find it when I was looking for it yesterday. Maybe they added it later. I'm sure the “Chronic symptoms” [sic] fact box wasn't there either when I last looked, but now it has appeared at the bottom of the 'Set on a quest to treat ME'...
  11. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Whatever is happening at the Otago Daily Times? They completely ignored ME awareness day but suddenly, this week, ME gets a lot of column space. First Jean Balchin's column a couple of days ago about her own recent diagnosis and now today a big feature in the business section, of all places...
  12. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    In the Otago Daily Times: Shedding light on an invisible illness by Jean Balchin Well written, as Jean's column always is, apart from a lack of consistency in terminology, a merry mix of CFS, ME and ME/CFS. Full article here: https://www.odt.co.nz/opinion/shedding-light-invisible-illness
  13. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    From the May 2018 MEISS (ME Information and Support Services, Otago & Southland) newsletter: I expect there'll be a report on the meeting and talks in a future newsletter but if anybody happens to be going let us know your impressions. The research mentioned above may or may not relate to...
  14. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    The mother of the teenager described in the article has co-founded a Facebook support group, NZcare4ME, including a closed group for carers of kids with ME. The open portion of the group's page looks quite good for general ME info in NZ (not just for carers) so could be worth following for Kiwis...
  15. Ravn

    'I'm not looking for pity, just a cure' - NZ article

    A year or so ago there was a big push of the LP in NZ. Interviews on highly regarded programmes like Campbell Live and on RNZ. Not specifically targeting ME but all sorts. I recall a chronic pain doctor giving it the thumbs up. Gave it a lot of credibility, unfortunately. And every single one...
  16. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Nice idea @Hutan. Always impressed by how much news there's coming out of Scandinavia. I fear there'll be a lot less from NZ but then Scandinavia spans several countries, NZ only the one. Incidentally, do we have any Pacific Island members, resident in NZ or the islands? Would be interesting...
  17. Ravn

    Denmark - Manifest to health authorities from 85 ME-patients

    Excellent initiative by the patients and the newspaper. Having a long list of short patient stories – instead of the usual one or two longer stories - is quite effective I feel. Instead of there being one or two unfortunate individuals readers briefly feel sorry for before moving on, here...
  18. Ravn

    ME in The Star ( Dunedin, NZ) featuring local research

    Articles about ME sufferers and about Professor Warren Tate's research team at Otago University. http://www.thestar.co.nz/digital-edition/?edition=STR_2018_05_10 (pages 22-23) There's an error with the digital edition and page 23 doesn't show. The Star has kindly sent a scanned image. So read...
  19. Ravn

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Well deserved! Unable to take in much of what you posted but I can see this is: 1) very important, and 2) an awful lot of work you're doing. So just wanted to thank you and let you know how much that work is appreciated.
  20. Ravn

    Fecal transplants not effective in patients with both IBS and ME

    https://www.ncbi.nlm.nih.gov/pubmed/29100842 (paywalled) 2018 Jan;3(1):17-24. doi: 10.1016/S2468-1253(17)30338-2. Epub 2017 Nov 1. Faecal microbiota transplantation versus placebo for moderate-to-severe irritable bowel syndrome: a double-blind, randomised, placebo-controlled, parallel-group...
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