IACFS/ME Conference Brings the Goods: Last Days for Discounts

Discussion in 'ME/CFS and FM News' started by Cort, Sep 26, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I've been attending IACFS/ME conferences for almost ten years and I am impressed. This conference is packed with more interesting talks than any conference I can remember. If you're going to attend now is the time to buy your tickets and reserve your hotel room. Today, the 25th, is the last day to get the special hotel price and the discounted rate for the conference tomorrow, the 26th.
    The Agenda

    Fort-Lauderdale-Westin.jpg
    On Thursday everybody will be listening closely Vicky Whittemore as she talks on “New Developments at the NIH”. Then Dr. Peterson and Dr. Fluge will talk on Rituximab and other new treatments in the patient portion of the conference. This will be the first time, I believe that Drs. Fluge and Mella have made it across the ocean to the IACFS/ME conference. It’ll be good to meet the two oncologists turned ME/CFS specialists who have provided such hope.

    Then there will be a series of patient and professional workshops on disability, pacing, mindfulness, international advocacy, diagnosing enteroviral infections, orthostatic intolerance, cardiopulmonary exercise testing.

    Later another new addition to the field, Jarred Younger, will talk about if not opioids, then what? and then he and Dr. Bateman will do a session on fibromyalgia.

    Rituximab and Emerging Treatments

    Dr. Fluge will begin the next day with a special 45-minute presentation on how the Rituximab trials have helped us understand the cause of ME/CFS.

    In a potentially huge and encouraging finding, not Dr. Fluge or Mella, but Dr. Patrick from Canada will speak on an immune signature that he believe may predict which ME/CFS patients will respond to Rituximab. Dr. Strayer from Hemispherx will not be speaking (how did that not happen?) but he will be presenting similar findings for Ampligen at the conference.

    One wonders what conceivable reasons the NIH could have for not funding both Rituximab and Ampligen ME/CFS trials now that it appears that we may be able to target who the drugs work for.

    Dr. Giloteaux from the distinguished Cornell microbiome lab will tell us how both the bacteria and the viruses found in the guts of ME/CFS patients are different.

    Dr. Shungu’s ground breaking studies have found high lactate in ME/CFS patient’s brains… now he’s going to use brain imaging to show how N-Acetylcysteine – long suspected by some to be helpful in ME/CFS – helped to alleviate that problem and improve symptoms.

    Lunch With Dr. Unger

    Then you can have lunch with Dr. Unger as she and her team present four talks on the CDC’s big ME/CFS multisite study.

    A Mitochondrial Disease?

    Jon Kaiser of Synergy will moderate what will surely be a fascinating discussion on whether mitochondrial problems cause ME/CFS featuring Ron Davis, Dr. Nancy Klimas and Dr. Shungu.

    Exercise is going to be getting a real workout at the conference. Dr. Van Ness of Workwell will report on a new exercise anomaly found in ME/CFS called chronotropic incompetence (CI) and what that means. People with CI to have trouble getting their heart rates up to speed during exercise.

    Dr. Haddad is going to tell us that exercise alters immune functioning (cytokine levels) in ME/CFS. (But do cytokines go up or down? My guess is down!).

    Exercise, Exercise, Exercise

    We’ve seen all sorts of different abnormalities during exercise but not one consistent one. Dr. Betsy Keller is going to bring some order out of that chaos by finally talking about the subsets of ME/CFS she’s found during exercise tests. Dr. Katarina Lien from Norway will show that exercise increases blood lactate levels.

    Some people with postural orthostatic tachycardia syndrome (POTS) get better with exercise, but a new face on the scene, Madison Keefe of Georgetown, will show that in other people exercise actually induces POTS. Finally, Dane Cook will show how exercise affects brain functioning and Dr. Hanson will talk on metabolomics (presumably after exercise).

    In other talks Gordon Broderick on tell us how sex hormones may be driving ME/CFS symptoms. (How could they not play a role given the all the gynecological problems found?)

    Jose Montoya will show cytokines are associated with disease severity. We’ll get five talks on gene expression and epigenetics.

    Many New Faces Highlight Best Conference Yet

    That said, I’ve been going to conferences for almost ten years and this is easily the most exciting yet. The number of researchers new to the field (at least 15) presenting at the conference that I had never heard of was very promising – and it was smart of the IACFS/ME to give them slots. In the next five years my guess is that the IACFS/ME will either need to add a day or two or go to a yearly conference (my preference). This field is growing up.
    Dr. Klimas's Nova Southeastern University Pre-conference

    Plus the day before the IACFS/ME Conference begins Nova Southeastern Unity will host a pre-conference day on Complex Neuro Inflammatory Conditions featuring Ron Davis, Gordon Broderick, Nancy Klimas, Mary Ann Fletcher, Irma Rey and others.
     
    Last edited: Sep 27, 2016
  2. Gamboa

    Gamboa Member

    Thanks Cort for getting me excited about this again.

    I had booked plane tickets months ago planning to attend ( from Ottawa Canada) but then saw the agenda and was a bit discouraged since, as you mentioned, a few of the big names that I expected to be giving talks were not doing so.

    You have shown me that it is going to be a great conference and I will register today. I am still debating whether to save money and not go on Wednesday- the patient day and workshops for professionals. I found in the past the talks for the patient day were often repeated later on in the professional portion of the program.

    My husband Clint is coming with me, like he did in San Francisco, so we are going to try and get a little sightseeing in as well.

    FYI-We are not staying at the hotel that is hosting the conference but at a cheaper, smaller hotel down the street ( there are a few that are highly rated yet affordable). I debated long and hard about this and finally booked last night. My concern, and one many of you might have, is walking distance and the ease of getting from hotel to conference. Hopefully I won't be too exhausted to go back and forth between the two. You might see me lying down a lot during the talks to save energy for the trip back to the hotel. :)

    Hope to meet some of you there. And will see you again Cort. Our once every 2 year meeting.

    Claire from Ottawa
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Looking forward to see you again Claire - our third time in a row :)

    I must say that Ottawa was the nicest setting. I just really enjoyed visiting that beautiful city = my first time and still my only time in Canada.

    For me the professional conference is where most of the action is at. I am still hoping that we can Davis and Naviaux in there - according to the agenda there is time open on the first night that has not been filled. In any case, Ron expects to be there and all the others. It is always exhausting but I particularly look forward to talking to Vickie Whittemore - and seeing all the people there. It's a chance to meet all these people we read and hear about but would never get the chance to meet in person.
     
  4. DebbieC

    DebbieC New Member

    Is this going to be recorded? And can a patient who is not a "professional" sign up for the "professional" rather than "patient"? And which days do you think would be most valuable for a desperate patient to hear?


    QUOTE="Cort, post: 24775, member: 2"]Looking forward to see you again Claire - our third time in a row :)

    I must say that Ottawa was the nicest setting. I just really enjoyed visiting that beautiful city = my first time and still my only time in Canada.

    For me the professional conference is where most of the action is at. I am still hoping that we can Davis and Naviaux in there - according to the agenda there is time open on the first night that has not been filled. In any case, Ron expects to be there and all the others. It is always exhausting but I particularly look forward to talking to Vickie Whittemore - and seeing all the people there. It's a chance to meet all these people we read and hear about but would never get the chance to meet in person.[/QUOTE]
     
  5. Katie

    Katie Active Member

    Oh, how I wish I could go, but it's a very long way (I live in beautiful British Columbia). When it's on this side of North America, hopefully I could attend then.
    Can't wait for your reports on the conference-and I'm hoping my ME doctor (Ian Hyams) will be there.
    I'm eagerly waiting for good news and hope for the future of ME.
     
  6. DebbieC

    DebbieC New Member

    I have never attended however my son is critically ill now. After seeing Drs Montoya, Kogelnik and Peterson I would love to be able to go and listen in. How indepth will the reports be?
     
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member


    QUOTE="Cort, post: 24775, member: 2"]Looking forward to see you again Claire - our third time in a row :)

    I must say that Ottawa was the nicest setting. I just really enjoyed visiting that beautiful city = my first time and still my only time in Canada.

    For me the professional conference is where most of the action is at. I am still hoping that we can Davis and Naviaux in there - according to the agenda there is time open on the first night that has not been filled. In any case, Ron expects to be there and all the others. It is always exhausting but I particularly look forward to talking to Vickie Whittemore - and seeing all the people there. It's a chance to meet all these people we read and hear about but would never get the chance to meet in person.[/QUOTE]
    I don't think the IACFS/ME has ever recorded a conference and yes, a patient can attend the professional conference and many do. I remember one researcher saying he was amazed at how many patients did; that just doesn't happen, apparently, in other diseases.
     
  8. Gijs

    Gijs Active Member

    ''In a potentially huge and encouraging finding, not Dr. Fluge or Mella, but Dr. Patrick from Canada will speak on an immune signature that he believe may predict which ME/CFS patients will respond to Rituximab".

    This would be a major breakthrough, Cort!
    I hope some really good findings will show up.
     
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes indeed!

    Someone reported to me that Dr. Peterson is already using this test in his patients. I think some doctors are afraid to try Rituximab without something like this because it is so powerful.
     
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The presentations? They can range from quite in depth to people just reading their abstracts. The panel discussions which Dr. Peterson and Ron Davis will participate in can be pretty in depth. There is a two-hour session on diagnosing severely ill patients (but not treating).

    I find some presentations to be really boring and others to be really exciting. Its hard to tell really. I would look closely at the agenda. The people presenting their papers typically have about 15 minutes

    It looks there are some good sessions on managing ME/CFS.

    3:15 pm – 5:15 pm
    Session 4: Diagnosing CFS/ME; Difficult Clinical Cases: Focus on Fatigue and Pain
    Session Chair: Nancy Klimas, M.D.
    Immediate Past President, IACFS/ME
    Professor of Medicine & Director, Nova Southeastern University
    Director, Miami VAMC Gulf War Illness & ME/CFS Research Program

    Panel:
    Lucinda Bateman, M.D., Bateman Horne Center of Excellence, Utah
    John Chia, M.D., UCLA School of Medicine
    Charles Lapp, M.D., Hunter-Hopkins Center, North Carolina
    Dan Peterson, M.D., Sierra Internal Medicine, Incline Village, Nevada
    Katherine Rowe, M.D., Royal Children's Hospital, Australia
    Peter Rowe, M.D., Johns Hopkins University School of Medicine


     
  11. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    By the way I asked the IACFS/ME about the abstract dates and they informed me that last minute abstracts could have been submitted by Aug 31st - surely enough time to get an abstract in. I apologize to them for missing that.
     
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