The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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BLOGS - ME/CFS/XMRV RELATED - Your Favorites, Top 10 & the Obscure!

Discussion in 'General ME/CFS News' started by Elisa, Mar 12, 2011.

  1. Hi All,

    I am putting together a list of ME/CFS/XMRV blogs and wanted to ask for everyones imput. I am interested in all types -strictly ME/CFS/XMRV related in any way anywhere US, Europe, Asia etc.

    So list your favs, top 5 or 10 - even the obsure - I need to find them "all" for my project.


  2. Esther12

    Esther12 Senior Member

    All the ones I can think of...

    In the Pipeline
    Alan Doves done a couple of bits on his site, away from virology.
    CFS central
    Some of Amy Dockser Marcus pieces for the WSJ are on their 'health blog' - not sure if this counts.
    Science Based Medicine had a couple of bits.
    Timothy Luckett's Hope for ME/CFS blog
    Treating XMRV blog

    I only got to 10! Really, I only check in on Virology now.
  3. Nina

    Nina Senior Member

    Hi Elisa, may I ask what your project is about?
  4. dancer

    dancer Senior Member

    Midwest, USA
    CFS Patient Advocate is one of my favorites.
  5. Jenny

    Jenny Senior Member

  6. Thanks everyone - this is very helpful to me.

    I have always enjoyed building databases - it's what I used to do professionally.

    I am trying to figure out ways to network our communities and reach each other and this is one way I have thought of.

    I am an advocate and I give of my time and resources when I can.

    I have severe ME/CFS and often can do very little.

    Thanks so much,

  7. Nina

    Nina Senior Member

  8. Thanks Nina!

    My database is coming along nicely...

    It's been a real learning experience reading so many peoples experiences with ME/CFS/ times inspiring and sometimes, when I'm (more tired) so very sad too...

    Take Care,


  9. shannah

    shannah Senior Member

    Hi Elisa,

    Some of these blogs may be duplicates to what you already have. Not sure if these will transfer over alright with links intact but will try. If the links don't transfer intact and you have difficulty tracking some down, let me know and I'll send you what I have on it.

    Biomedical ME-CFIDS.url
    CFIDS Research - Dr. Timothy Luckett.url
    CFIDS Watch.url
    CFS Central - Mindy Kitei.url
    CFS Chronicles - Heidi Bauer.url
    CFS Patient Advocate - Chris Cairns.url
    CFS Untied - Khaly Castle.url
    Cinder Bridge.url
    Dancing With The Sandman - Andrea Pring.url
    Lannie in the Lymelight.url
    Learning to Live With CFS - Sue Jackson.url
    Living With Chronic Fatigue Syndrome - Kyal.url
    Networked Blogs - John Herd.url
    Nice Guidelines Blog - Dr Speedy (Alex - Australian GP).url
    Oslers Web - Hillary Johnson.url
    Peggy's Blog - Peggy Munson.url
    Slightly Alive - Mary Scweitzer.url
    Surviving & Thriving With Nwuroimmune Disease - Andrea Whittemore.url
    Testing Negative – Staying Positive Paula Carnes.url
    The Corner Room - Alexis Cairns.url
    The Exit Project - Peggy Munson.url
    Treating XMRV - Dr. Jamie Deckoff Jones.url
    Virology Blog - Vincent Racaniello - XMRV infection of Rhesus macaques.url
    X-treme denial.url
  10. Mark

    Mark Former CEO

    Sofa, UK

    What a good subject for a thread! It would be great to see a comprehensive list of ME blogs emerging...

    My favourite ME Blog by quite some distance is Nederlog by Maarten Maartensz:

    Maarten's an exceptionally intelligent writer who has been blogging for more than a decade, and he has an extremely logical and principled approach. He pulls no punches and can be very hard-hitting and critical of a wide range of people within the ME/CFS world - leading advocates included - but whilst that style may be too abrasive for some (and perhaps, sadly, incompatible with the principles of this particular forum), I find his perspective essential reading. Whenever I'm puzzled about an issue of internal politics or looking for a different perspective, I turn to Nederlog. I don't always agree with Maarten's conclusions, but his analysis is always thought-provoking and hard to disagree with.

    His recent summary of issues around ME and XMRV was particularly good; one of the most well-balanced pieces of writing I've read on that subject:

    And here's a great page full of ME-related resources and information: a veritable treasure trove:

    Since I'm writing about Maarten, I'll also make some comment now on a matter of considerable regret both to myself and to Cort: the circumstances under which Maarten left Phoenix Rising. I haven't commented publicly on this subject before now, but since there's a chance that Maarten may read this post, whereas he seems to be ignoring my emails, I'll just have one more attempt at apologising for my bungled early attempts at moderation, and try to set the record state on a rare occasion where Maarten "believed something on the basis of insufficient evidence".

    It's a matter of great personal regret that when I first became a moderator on Phoenix Rising, I moderated a post of Maarten's in a hopelessly bungled fashion; I was under a lot of pressure at the time and made a complete mess of it. With hindsight I can understand why Maarten found that moderation so unacceptable. At the same time, I was emailing with Maarten behind the scenes, and I was very excited to find such a fascinating person with so many interests in common with myself. To my great regret, that excitement of finding a writer who appreciates Russell, Plato and Heller but is sceptical of Wittgenstein, and who writes with authority on the philosophical and psychological themes of interest to all of us with ME...that excitement led me to make some assumptions and leaps that weren't justified; I thought I'd found a kindred spirit, I assumed too much, and something in our conversation got lost in translation. A confused and rushed email hoping to explore the issues around my circumcision operation (a result of a chronic infection that went untreated by a doctor who believed I was psychosomatising but of course did not tell me so) was misinterpreted - I felt sure Maarten himself had raised this issue in an earlier PM to me but my inbox was so chaotic in those days that I may have confused him with somebody else - a rather tragic error if so.

    Anyway...I remain very sad that Maarten left PR because of my mistakes, but the positive aspect is that the break between us doesn't stop me from reading and appreciating Nederlog, and it doesn't stop Maarten from appreciating what's best from Phoenix Rising as well, so neither of us are throwing away everything because of the differences between us, and that's just as it should be. Part of me wishes we were still chatting about everything from Mathematical Logics to the works of my favourite author Joseph Heller...but I have quite enough work to be getting on with so maybe that's for the best too.

    Perhaps Maarten will still see my repeated expression of great "respect" for him and his writing as a mocking and sarcastic insult - I suppose my heartfelt appreciation of his writing may have seemed over the top - but nevertheless it's still true that he's someone whose opinion I value and respect enough to continue to seek it out. Nothing more to be said, I suppose, except to say once again to Maarten that I genuinely am very sorry for the way I messed up that moderation job, and very regretful of the upset I caused him; to sincerely wish him all the best; and to thank him very much for Nederlog.
  11. 5150

    5150 Senior Member

    Right here on PR, there is The Spitfire . She writes succinctly and with deep feeling about her own feelings and experiences. Her heartfelt thoughts are right up front about topics to which we can well relate with this "freaking illness". I don't know if there's a regular schedule for her; maybe she writes as things come up.

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