Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Dr Nancy Klimas: 7 Feb annual patient conference - “Cellular Energy and its Impact on Health”

Discussion in 'General ME/CFS News' started by Sasha, Feb 1, 2015.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Dr Nancy Klimas is holding her annual one-day conference for patients and it sounds very interesting. Here's Cort's blog on it:

    Read more: Increasing Energy in Neuroimmune Disorders: The Klimas Patient Conference http://www.cortjohnson.org/blog/2015/01/31/increasing-energy-neuroimmune-klimas/

    Patients can attend both in person or via webcast (which costs $20, I think) and you have to register by 4 Feb.
     
    WillowJ, Anne, Bob and 5 others like this.
  2. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,021
    Florida
    Thanks for posting this, @Sasha ! I read Cort's post, and while it sounds exciting, I have to wonder - if it's been 8 long years and no new treatments have been offered to Klimas's patients, how life-changing can this be? All these studies are fabulous and give me some much needed hope, but it's time we were offered some choices in treatment instead of waiting for drug trials which can take years.

    This is in no way meant as a slight to Dr. Klimas and the others who are working so hard to help us. They do so at the risk of professional ridicule, low pay, and bearing the burden of one of the sickest patient populations imaginable. I appreciate each and every one of them.

    Sorry to be a pessimist, but I've been excited about discoveries too many times. That said, I'll likely tune in and see if there's anything I can try on my own, which is a sad testimony to the state of ME/CFS in 2015.

    Now, I'm going to hop back on the unicorn and rainbow train, and get about having a pleasant day in spite of it all! :thumbsup: Thanks for letting me vent!
     
    catly, ukxmrv, merylg and 10 others like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Here's a bit more info about the 'eight years' business:

    Who knows, @SDSue! :) Sounds good... I wonder if it's taken them 8 years to get enough patients recruited, which would be a bit of a sorry tale, or it they've just cumulated all their data and are giving the big picture.
     
    Helen, Sushi and SDSue like this.
  4. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,021
    Florida
    It does sound good, doesn't it @Sasha ! My fingers are crossed, albeit more loosely than they've been in the past!

    From what I recall reading and being told (that's always a gamble with an ME brain), ME/CFS patients are so desperate that most study sites are amazed at how rapidly they fill their subject quotas. Let's hope this is the case here! Sadly, the missing piece, as always, is the severe patient population as they are unable to participate.

    I can't wait to see this thread light up after the conference! :thumbsup:
     
    merylg, rosie26, Sing and 1 other person like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    SDSue likes this.
  6. melamine

    melamine Senior Member

    Messages:
    341
    Likes:
    376
    Upstate NY
    OTOH, I can't help but wonder if studies involving the bed- and wheelchair-bound population would be used to exclude those of us who "appear perfectly healthy" on those days we don't cancel our doctor appointments, and even relatively, those days we do.
     
  7. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    866
    Has anyone else registered to attend the conference via webinar?

    I've registered but can't see where the link is to actually join the webinar on Feb 7th....?

    Thanks.
     
  8. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    "...eight years of effort focused on attempting to understand and fix what's happening during exercise..."

    I think they may be throwing darts at the wrong target.
     
  9. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,021
    Florida
    In preparation for the conference webinar, (because I'm an information junky!) I watched Jon Kaiser, MD's video from May 2014. The first 30 minutes detail the research behind, and results of, the initial small Synergy trial. The final 28 minutes are all about recruiting for the larger formal study he's reporting on this weekend, thus can be skipped.

    Enjoy!

     
    Sasha and SOC like this.
  10. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    I have a problem with vendors of this patient conference selling 'tongue and heartbeat assessments'. Alternative medicine and unproven methods of diagnostics is not something I would actually approve of if I was someone that is considered world class such as Nancy Klimas, Mwry-Ann Fletcher and Gordon Broderick.

    I also find it appalling that they give access to speak with them providing they pay a little more. Bad idea. Most patients are on disability and receiving social security.

    I certainly will save myself 20$. Not going.
     
    voner and RL_sparky like this.
  11. SOC

    SOC Senior Member

    Messages:
    7,839
    Likes:
    16,544
    Yeah, well, it was probably set up by the university and we all know universities like to get their $$$. While there are plenty of advantages to our researchers being associated with universities, there are also downsides.
     
    SDSue likes this.
  12. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    The last thing we the patients need is to have the disease branded in the alternative world.
     
    melamine, SOC, Cheshire and 1 other person like this.
  13. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    I still hope something interesting might come out of this. Will anyone be watching and tweeting (or writing a bit of a summary?)
     
  14. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,021
    Florida
    In my previous life, I organized many conferences. Unfortunately, conferences can be quite expensive and often require sponsors. Once ME/CFS is "mainstream", we will have the luxury of more legitimate sponsorships. In the meantime, perhaps it's best to take what we can get so the information can be disseminated?

    Besides, aren't all ME/CFS/Lyme doctors actually using what mainstream medicine would call "unproven methods of diagnostics"? And aren't all diagnostic methods unproven until they are proven? ;)
     
    melamine and SOC like this.
  15. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    The problem I have is that mainstream medicine is not buying tongue diagnosis, like if your tongue is black you have liver problem. (Completely random example) Tongue diagnosis is alternative medicine and is not likely to cross over any time soon.
     
    melamine likes this.

See more popular forum discussions.

Share This Page