You are here: Simmaron ResearchConferencesSimmaron’s Immunology Workshop at IACFS/ME: Redefining How Chronic Fatigue Syndrome Is Diagnosed and Treated

Simmaron’s Immunology Workshop at IACFS/ME: Redefining How Chronic Fatigue Syndrome Is Diagnosed and Treated

Immunology Primer For Practitioners

I’ve been going to IACFS/ME conferences for eight years now and I’ve never seen a Workshop like this. This is a Workshop that could change how Chronic Fatigue Syndrome patients are tested and treated in the upcoming years. Called the “Immunology Primer for Practitioners“, it’s chaired by Dr. Daniel Peterson.

key

Standard immune tests for ME/CFS patients could change viewpoints and unlock new treatment opportunities for many.

It’s mission: to produce bulletproof recommendations for immune tests that will guide both the diagnosis and treatment of chronic fatigue syndrome. Doctors are interested, patients are surely interested, and Dr. Unger from the Centers for Disease Control (CDC) is interested, so Simmaron Research is seizing the moment.

Recognizing the opportunity and realizing that a consensus recommendation of experts would carry the most weight, Simmaron gathered 12  experts (sponsoring half of them), including nine immunologists, to produce ironclad recommendations.

Redefining ME/CFS Indeed

The Simmaron Research Foundation is committed to ‘Scientifically Redefining ME/CFS’ and  few things could change the landscape more rapidly for patients than the CDC including immune tests in its ME/CFS management guidelines.

We know common blood tests reveal little or nothing about ME/CFS, but  immune tests may not only be very revealing, but may open the door to a new conception of ME/CFS in the medical community, and to a whole swath of treatments most MD’s know little about.

Producing Real Change

vision

Simmaron is committed to funding work that alters how the medical profession sees and treats ME/CFS

In order to produce real change you need to get at the ‘levers of power’ and, like it or not, the CDC is one of those levers. The CDC is trusted by gatekeepers in the medical field. It’s recommendations matter. As we know, for better (in this case) or for worse (in the past), they get spread around.

Dr. Unger’s interest in immune test recommendations from ME/CFS experts is just the latest in a series of transformative moves at the CDC.  Instead of holding ME/CFS experts at arm’s length, Dr. Unger has embraced them. She has visited many of the experts’ centers, and her multi-year, multi-site clinical assessment study is bringing the insights of ME/CFS experts to the fore at the CDC and other agencies for the first time.

The Latest in Immune ME/CFS Research

Besides the recommendations, the Workshop will provide education for clinicians on the immune system in ME/CFS, overviews of immune findings, and insights into cutting-edge ME/CFS immunological research. We will hear highlights from the Australian NCNED teams intense focus on natural killer cells, learn what the  CDC is currently researching, uncover what very severely ill ME/CFS patients’ immune system looks like, understand how herpesvirus infections might be linked to autoimmunity and more.

The immune system features prominently in this years IACFS/ME Conference

The immune system features prominently in this years IACFS/ME Conference

Underscoring the strong immunological focus in this IACFS/ME Conference, Dr. Peterson’s session follows an opening presentation by Dr. Ian Lipkin.  Dr. Lipkin described evidence of “ongoing stimulus to the immune system” and a different immune profile  patients ill less than 3 years have compared to long term patients last fall on a conference call hosted by Dr. Unger.

Dr. Klimas’ panel the next day will go deep on “The Latest Research in Immunology”, including results from Dr. Lipkin’s collaborative research, the CDC’s genomic study, and Dr. Marshall’s natural killer cell research. Her panel follows the Plenary Session with Dr. Noel Rose, Director of the Center for Autoimmune Research at Johns Hopkins.

It is a pivotal time in ME/CFS, and immunity and autoimmunity are coming into focus. Simmaron seeks to take these groundbreaking sessions into clinical practice with consensus.

Simmaron Research Foundation Moving Forward

Yes

Redefining ME/CFS step by step

This is just one of the Simmaron Foundation’s efforts to redefine Chronic Fatigue Syndrome by taking advantage of the expertise and experience of Dr. Peterson and his fellow practitioners.

That effort began with Dr. Peterson’s retrospective analysis of treatment success using Vistide in selected patients and will continue with further analyses of the effects of other immune-based treatments, like IVIG and Ampligen.  Dr. Peterson will also be participating in the B-12/MFTHR trial this spring.

In order to address a critical need for more expert  ME/CFS clinicians the Simmaron Foundation has also funded a practitioner to learn from Dr. Peterson. Bringing expertise and research to patient care is Simmaron’s mission.

Support the Simmaron Research Foundation’s Work to Scientifically Redefine ME/CFS

SR_match_10.9

__________________________________

“Immunology Primer for Practitioners” Panelists

  • Daniel Peterson, M.D., Owner, Sierra Internal Medicine, Incline Village, NV, Simmaron Research Scientific Advisor
  • Sonya Marshall – Gradisnik, BSc (Hons), Ph.D. , Professor of Immunology, Director, National Centre for Neuroimmunology & Emerging Diseases, Griffith University, Australia
  • Sharni Hardcastle, Ph.D., Research Assistant and Practical Demonstrator , Bond University, Gold Coast, Australia
  • Nancy Klimas, M.D. Ph.D., Professor of Medicine and Director, NSU COM Institute for Neuro-Immune Medicine Director, Miami VAMC Gulf War Illness and ME/CFS Research Program
  • Paula Waziry, Ph.D, Assistant Professor, Neuro Immune Medicine, COM, Nova Southeastern University, Miami, Fl
  • Konstance Knox, Ph.D., Founder, CEO, Coppe Healthcare Solutions
  • David Baewer, M.D. Ph.DMedical Director, Coppe Healthcare Solutions
  • Isabel Barao, Ph.D., Research Assistant Professor, University of Nevada, Reno, Simmaron Research Scientific
  • Gunnar Gottschalk, B.S., Simmaron Research, Incline Village, NV
  • Troy Querec, Ph.D., Associate Service Fellow, Centers for Disease Control and Prevention, Atlanta, GA
  • Dennis Mangan, Ph.D., Former Chair, Trans-NIH ME/CFS Research Working Group, Office of Research on Women’s Health, U.S. National Institutes of Health
  • Mary Ann Fletcher, Ph.D., University of Miami Miller School of Medicine Professor of Medicine, Microbiology/Immunology and Psychology
  • Elizabeth Unger, M.D. Ph.D., Chief, Chronic Viral Disease Branch, Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases. Centers for Disease Control and Prevention, Atlanta, GA

 

 

 

Print Friendly

29 Comments

  • Pat

    February 23, 2014 at 7:10 pm - Reply

    This is so encouraging and exciting Cort! Love to see some things beginning to come together in a positive way.

    • Cort Johnson

      February 23, 2014 at 7:26 pm - Reply

      Agreed – major movement by Dr. Unger who continues to surprise and good for Simmaron Research for making the most of this opportunity, and getting so many immunologists to the conference and workshop.

      • Marcie Myers

        March 7, 2014 at 12:59 am - Reply

        Cort, forgive me what is likely the obvious, but when and where is this meeting to take place? I’d like for everyone to encourage Dr. Unger to pull CFS/ME, FM, MS, Parkinson’s, RA, Lupus and other NEI/autoimmune disorders out from under it’s current place with “chronic diseases”. And I hope that the upcoming meeting will add the knowledge to get ME/CFS into the curriculum of American medical universities which is simply WAY past due! I’ve had my diagnosis since ’94, been on disability since ’99, and am still waiting for any physician, P.A., N.P., or medical student to even know what CFS is an acronym for. I say this because I have asked many people at the Medical College of Ga’s teaching hospital and clinics and not a single MD has any knowledge of my diagnosis/disability.

  • Terry

    February 23, 2014 at 7:22 pm - Reply

    In the meantime, is there an online resource for this particular list of tests?

    • Cort Johnson

      February 23, 2014 at 7:25 pm - Reply

      They’ll come up with the list at the Workshop and then we’ll know. I’ll certainly report on it.

  • Gregory G Cutler DVM

    February 23, 2014 at 8:02 pm - Reply

    If there are immunological tests for diagnosing ME/CFS why have I as recently as 2 months ago been through the usual series of prolonged tests by a world recognized diagnostician in ME/CFS to rule out other possible diseases? Why weren’t these tests discussed last year at the FDA meeting? If such a test exists and would lead to treatment why wasn’t that discussed and the drug entered for study? Meetings like this will discuss theory, and lead to possibly studies if they can find enough money for a true trial at the very best. I find it encouraging to have Dr Unger involved but would certainly be more encouraged if she talks money after the discussion!

    • Cort Johnson

      February 24, 2014 at 5:56 pm - Reply

      Indeed. These are perfect questions for the FDA. With their retrospective analyses of Vistide, IVIG and Ampligen Dr. Peterson and Simmaron are trying to push the FDA and others to recognize there are immune therapies that are helpful for some patients. Hopefully they’ll get enough money for a pilot study. In the meantime we have the B-12 MTFTHR study that should be starting soon.

  • Tisha

    February 23, 2014 at 8:20 pm - Reply

    If this were to become a reality it would be a dream come true in so many ways.

    Allowing absolute confirmation that there is something ‘biological’ happening within the body would be a monumental step forward.

    I wonder how many M.E. patients have been told that their symptoms are due to psychological problems, i.e. stress etc, and they have damaged their long term health/prognosis by trying, hopelessly, to ‘overcome’ their symptoms?

    On the financial front it would be amazing to be able to give total proof to insurance companies, social security departments etc, that a patient has a ‘real’ disease.

    I watched a video of Dr Peterson today where he said he could happily state that in the US ME/CFS is now widely considered a physical disease. Unfortunately that is not the case in all countries, and certainly not the view amongst many health care workers here in the UK.

    To have a test that would give validity to this disease would be wonderful. To then be able to use the results to possibly work towards a treatment would be beyond my wildest dreams!

    Thanks again Cort for keeping us so well informed.

  • SusanKennedy

    February 23, 2014 at 9:37 pm - Reply

    What ever happened to the drug ampligen and Dr. Klimas trials? I asked to get in on the trials. But if you call they tell you they are not accepting any new patients! So, I went through the drug manufacturer and they said they would call her and get me on the list. Never got a reply from anyone. Just another put off by the medical community!

    • Cort Johnson

      February 23, 2014 at 9:50 pm - Reply

      The FDA did not approve Ampligen last year and I really don’t know what’s up with Hemispherx and Ampligen now. I know them and the FDA have been talking but that’s about it. I would try again with them; sometimes (lots of times) individual patients get lost in the mix. Good luck.

    • Fern Mulholland

      February 24, 2014 at 1:34 am - Reply

      Hi Susan,

      I also tried to get an appointment with Dr. Klimas – got the same response. There is no waiting list either. I was told to keep calling about once a month to see if there are any openings. Have tried several times over the years, most recently last month. This was surprising to me, as I thought they now have a bigger clinic.

      If this workshop pans out, maybe there will be a lot more doctors willing to take on and treat ME patients! How exciting that would be! Great job Cort!

      • Cort Johnson

        February 24, 2014 at 5:52 pm - Reply

        It’s going to be really interesting how this all turns out; what the recommendations are and how the CDC goes about disseminating them. I would be very surprised is they asked for them and then didn’t put them in their toolkit.

        We need a lot more doctors….In that vein it’s good to see Simmaron sponsoring a doctor to work with and learn from Dr. Peterson.

  • Jeanie

    February 23, 2014 at 9:45 pm - Reply

    Cort, what exactly are the differences between people who have had CFS for three or less years and those who have been sicker longer?

  • Christian Godbout

    February 23, 2014 at 11:18 pm - Reply

    I am drooling over this upcoming Primer! Chaired by Dr Peterson! Finally… His troubling absence from the IOM comity all of sudden seems secondary (almost). What a wonderful piece of elite scientific work this is going to be. Great news. And many thanks to the Simmaron Research Foundation.

    • Cort Johnson

      February 24, 2014 at 12:15 am - Reply

      I just want to note that Simmaron not only created this Workshop, but made it possible for eight of the immunologists to attend. Please support them if you can.

  • Kathryn

    February 24, 2014 at 2:19 am - Reply

    KevinMD who just published that CBT and GET are the therapies of choice should be at this meeting!

  • Gijs

    February 24, 2014 at 10:04 am - Reply

    I am not so optimistic. There are many primers. Nothing will be done with this primer unless the CDC will promote it.. Secondly there are no objective markers even the only consistently found NK cel disfunction prove nothing. i know patiënts who have had nk disfunction later in the disease there nk cel function where normal but they remain very sich. Only if Lipkin has found something things can turn.

    • Cort Johnson

      February 24, 2014 at 5:49 pm - Reply

      I assume the CDC asked for the recommendations so they could use them (?). I don’t think this is about defining ME/CFS; I think it’s about being able to identify immune deficient or patients with viral infections so that they can be treated. In that vein I think NK cells would be only thing they would test for. I imagine they will recommend that IgG subclasses, autoimmune markers – particularly for thyroid, some cytokines and I’m sure there are others to look for. We’ll see at the Workshop. :)

      • Laura

        February 25, 2014 at 7:09 pm - Reply

        Cort,

        Thanks so much for the updates and all your work, especially given that you are battling ME/CFS yourself.

        • Cort Johnson

          February 25, 2014 at 7:17 pm - Reply

          Thanks Laura, It’s always uplifting to report on good news like this.

      • Chris N

        February 25, 2014 at 9:14 pm - Reply

        The other first-test I had with NK was EBV, and I had the soaring titers without the sore throat or glands. I’m not sure if that shows what Lerner/Glass think is happening. I’d have liked to see one of them in attendance.

  • Chris N

    February 24, 2014 at 8:08 pm - Reply

    CDC should have asked for this moons ago. It – appears – to be a positive step. The blood tests in the Canadian Criteria don’t necessarily nail down ME/CFS either; in absence of all else, though, they show a footprint, variable but still distinct. But for the longest time, CDC’s been saying there are no blood tests of value, whatsoever. If this really modifies the toolkit, great. It’ll matter much more, though, if CDC changes its public material, giving less wiggle-out room for the insurance companies. That, in my presumption, goes against the true purpose of the IOM contract. Thanks, Cort, for keeping us in the loop.

    • Cort Johnson

      February 25, 2014 at 7:19 pm - Reply

      Indeed they have, and if the CDC embraces these findings and starts advocating that doctors do these tests, that will be a big step forward. What I believe is occurring is that Dr. Unger is seeing from the data she’s gathering and from her experience that these physicians really do make a difference, that their treatments do help and that she should therefore get the information. In short, I think things have really changed at the CDC. :)

  • geoffrey keith brown

    February 27, 2014 at 6:18 pm - Reply

    I have brain damage shown on mri scan
    I had open heart surgery after I fell and broke my sternum and preliminary scan showed something wrong
    my aorta valve had large infection burn holes in the leafs of the valve otherwise my heart was in pristine condition
    nothing has been done to test the infection nobody is interested
    my doctor says cbt and get how laughable but the jokes on me
    I would have been dead in 2 years had I not fell
    for the love of god cort help me see somebody that understands me/cfs mcs fms this is 27 years of slow decline

    • Cort Johnson

      February 27, 2014 at 6:38 pm - Reply

      Wow. Geoffrey,

      Ouch….As Kristin Loomis noted in her interview, the US medical establishment is just not interested in infection and the heart.

  • nancy

    February 27, 2014 at 9:33 pm - Reply

    Is this seminar going to be webcasted so those of us that can’t travel watch the seminar? I sure hope so. I am so excited about this meeting, wish my immunologist would go. I hope there is a great turnout!! Will you be going Cort and taking notes for us? Thanks.

  • Leave a Reply