arrow18 Comments
  1. Maija Haavisto
    Jan 02 - 1:57 pm

    Interesting list! I hadn’t heard of the murder mystery. That makes at least six novels about CFS/ME by now.

    Last year I wrote what I believe is the first play about CFS/ME, based on my 2011 debut novel. Its future is sadly uncertain at the moment, as the person who originally requested it for her theatre has disappeared, but I have a prospective director lined up, so hoping for a 2014 premiere… I’m hoping to translate it into English, but I will have to figure out the implications for its future in Finnish theatres (and the future of my novel, for which I’m hoping to acquire translation rights some day).

    • Cort Johnson
      Jan 02 - 4:49 pm

      Good luck with that…The first play on ME/CFS. I missed your debut novel though….is that in English?

      • Maija Haavisto
        Jan 05 - 4:13 pm

        Hopefully at some point it will be. I’m trying to find an international publisher, but my Finnish publisher is so small it’s pretty much impossible to get an agent. So I’m trying to get a CFS/ME organization, a disability organization or a normal publisher with special interest in disability to pick it up (or my following novel, also about CFS/ME).

        Heck, I could translate it myself, if I have a native speaker check it. But I really wouldn’t like to go the self-publishing route again, it sucks.

  2. Tony Mach
    Jan 03 - 6:24 am

    “Biggest Individual Disappointment”? BS, Komaroff had valid reasons not to vote for approval of Ampligen. What a slanderous sleight of hand to omit this. Komaroff never does or say anything without having his facts very well checked.

    But hey, you call Mikovits actions a “Most Graceful ‘Retreat’”. She was fearmongering about HGRV, shouting about conspiracy and fraud, accusing John Coffin and Robert Silvermann of all kinds of malicious behavior. And now everything is supposed to be dandy? Graceful my ass, Mikovits owes the ME/CFS community and the scientific community an equally public apology.

    But please, censor any dissenting voices, make Komaroff the villain and Mikovits the saint, while there is valid reason to assume that Mikovits is a loudmouthed bullshitting fraud.

    And have fun with your “Body/Mind/Dualism” BS – that isn’t so far away from what Wessely and Co think, BTW.

    • Cort Johnson
      Jan 03 - 9:33 am

      You’re skirting the boundaries with your profanity, Tony. The next one will be blocked. Of course Komaroff had valid reasons for not approving Ampligen but I suggest he had even more reasons for approving it. Such as a population that really needs more treatment options..Well recognized doctors such as Dr. Peterson, Dr. Lapp or Dr. Bateman who’ve found it an effective and even, at times remarkable drug. he could have considered requesting the FDA conditionally approve Ampligen under tight restrictions. There’s also the factor that a no vote could end Ampligen as an option for ME/CFS; after all it took 20 years to get to this point.

      Let’s just say Dr. Mikovits did retreat gracefully and, whatever else happened (and alot of bad stuff happened; I heartily agree with that :)), when something like that happens I think that should be acknowledged.

      I don’t know the difference between Johannes approach and CBT; I don’t think they’re the same – Johannes is using techniques from neurolinguistic reprogramming, Buddhism and other kinds of mindfulness practices. These kinds of protocols helped him and they do help me and I believe given the evidence of sympathetic nervous system upgregulation, which grows stronger every year, that it makes sense that they can be quite helpful, particularly for people with milder cases of ME/CFS.

      In any case, my standard for putting something on the website is if it helps not if it fits in one category or the other. I feel that if it’s helpful for some people then others will surely benefit. ME/CFS is a very heterogeneous condition and there will be a host of things that help some people and don’t help others. Regarding CBT at the FDA Advisory hearing Dr. Bateman said it helps people who are not managing their condition well to manage it batter.

      • Anne
        Jan 03 - 10:40 am

        I have great respect for and appreciation of Prof Komaroff, but I, too, was surprised by his “no” votes. I also remember being surprised a few years back, when he was one of a small group of reviewers of the CDC’s work on ME/CFS – and the review marked the CDC’s work in the field as “excellent” or “adequate” or something to that effect.

        These two things seemed out of character to me! Apart from them, though, I am deeply grateful for all Prof Komaroff has done and is doing for the ME/CFS patient group – I wish there were more people like him.

        Thanks for the post, Cort!

  3. Anne
    Jan 03 - 3:01 pm

    <>

    I missed this. How do you mean, “shreds it”? What happened?

  4. Anne
    Jan 03 - 3:02 pm

    The quote was cut out in my last try… Here I go again:

    “Most Untimely Grant Denial

    Just months after the Rituximab trial results are published, the Congressionally Mandated Defense Program not only fails to fund the CFIDS Associations multi-center, autoimmune autoantibody grant proposal backed by numerous high-level researchers, but reportedly shreds it in the process of doing so.”

    I missed this. How do you mean, “shreds it”? What happened?

    • Cort Johnson
      Jan 03 - 4:08 pm

      I was told they just beat the heck out of it…were very critical of it and not particularly supportive. I was told that most of the CFS grant proposals fared the same.

  5. James
    Jan 05 - 2:44 pm

    Thanks for the great highlighting of last year’s big CFIDS/ME events.

    It would be great if you could interview Montoya and post an update on his work. I’ve been in a couple of his studies but nothing appears to be getting published or finished. Not just the Valycte trial you mention but an EEG study and a blood pathogen immune marker study for which they drew a lot blood (I think this was the national multi-center trial). That was 2 1/2 years a go. Any updates you could get out of them would be great, even if it that they are just working on trying to get stuff published.

    • Cort Johnson
      Jan 05 - 3:32 pm

      Agreed. He would be top of my list…because, as you note, there’s lot of interesting stuff that will hopefully show up. I am trying :)

    • Maija Haavisto
      Jan 05 - 4:19 pm

      Sometimes studies take ages to get published. :-/ Like the low dose naltrexone for fibromyalgia study #2. The first one was published in 2009, the second one got from the same group got just as good results. Very preliminary results were released at the Glasgow LDN conference in April 2010, more results were released in an important conference (AAPM) in early 2012, then some data from the study was released as a weird statistical(?) paper that went way over my head, but from what I’ve seen the actual study results still haven’t been published in a medical journal (conference publications aren’t the same, since they aren’t peer-reviewed), almost three years after the preliminary results. I’m sure they’ll be out soon, but it’s a long time to way.

  6. Helen Watkinson
    Jan 07 - 2:36 pm

    Thanks for the great summary.
    Re the Closest Loss “After pulling into first place the ME/CFS Community Center runs out of gas in the last two days of the Citgo Gas Refueling contest and just misses winning $5,000 in gas cards for the ME/CFS Community”
    CFS Solutions of West Michigan did win $5,000 in the Citgo contest. We made a valiant try to vote 2 groups in, but the second group fell short on votes.

  7. Cort Johnson
    Jan 07 - 3:30 pm

    Congratulations! I didn’t realize that you guys got in…:)

  8. Dan Neuffer
    Jan 07 - 7:28 pm

    Great post – you really have your finger on the pulse – :)

    You know my stance on the pathogenesis of CFS/Fibromyalgia, so no surprises on the XMRV debacle here. I never undertood they hype given that clearly if everyone doesn’t have it – it can’t be the cause. I often wonder where the logic went in medical ‘science’.

    It seems there is a greater acceptance of views such as mine throughout Europe where the medical community is starting to cotton on about the central role of the ANS. So there are many other people like Dr Newton who do good work in this area.

    However, unless pharmaceutical solutions are involved, only continued support by people who recover or are still looking to recover will ensure that the voices of these scientist finally get heard and that they somehow get funding to continue their work.

    That’s why a higher profile for the illness and a louder joint voice is so important here, because I pesonally don’t believe that a “cure” is going to arrive at your local pharmacy any time soon.

    In the end, I suspect that recovery stories will always speaker louder than theory alone because no matter how sound or true, unless the wider medical community gets behind it, it may always be obscured by a mass of irrelevant and hence confusing science.

    Things are moving faster than ever – we are lucky to have someone like you to promote the cause – well done. I think we will see some real changes in the next few years.

    • Cort Johnson
      Jan 07 - 7:41 pm

      Thanks Dan,

      I’m working on a recovery stories database. I, too agree that the ANS is the key; I feel it in my guts – sometimes quite literally. Congratulations on your recovery by the way. I look forward to reading your book.

      You’re right about the pharmacy….that’s going to take awhile..

      • Dan Neuffer
        Jan 07 - 8:49 pm

        Hi Cort

        I have also started collecting recovery stories which I share on my site (only a few so far).

        CFS Unravelled will be out on Amazon shortly – being a kindle book (can be read on any device including PC), people will also get a link to the video lecture which complements the book.

        There will be a short window where I can give the book away for free, if you like I can let you know when that happens so others can get a free copy.

        • Cort Johnson
          Jan 07 - 8:56 pm

          Please do let me know and we can organize something .

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