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International Association for CFS/ME Spring Conference 2014: Translating Science into Clinical Care

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 23, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    The IACFS/ME Spring Conference promises to be one of the main events of 2014, and with 'early bird' tickets for patients still available, Searcher provides an overview of what we can expect, as well as interviewing the IACFS/ME President, Dr Fred Friedberg, before preparing to attend the conference herself...

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    The 11th biennial IACFS/ME conference will be held in San Francisco at the Parc 55 Wyndham Hotel from March 20-23, 2014.

    It was last held in Ottawa in 2011, at a time when the focus for research, and of patient interest, was perhaps directed at XMRV.

    Much has changed since that time, with the focus moving to new areas, so we expect to hear more of these developments - especially given the impressive line-up of speakers.

    The event will be co-sponsored by Stanford University for the first time, who will also hold their own one-day meeting, and is a great sign of the commitment being shown towards our condition by this institution.

    The IACFS/ME four day conference is aimed mainly at professionals, but patients have their own one-day event, and are more than welcome to attend the full event should they wish to do so.

    The Patient Conference

    The agenda aimed specifically at patients will be on the initial day, Thursday March 20th, and speakers will include, Professor Ian Lipkin, who will be followed by leading clinicians such as Drs Montoya, Klimas, Komaroff, Lapp and Bateman, as well as Dr Lenny Jason.

    "...the patient meeting agenda includes some of the highest profile scientists and clinicians both in and out of the field..."

    The presentations will consider such topics as, new developments on causes for ME/CFS (Komaroff), coping methods with ME/CFS and Fibromyalgia (Friedberg and Jason), effective management of activity intolerance (Stevens), and the use of medications in treatment (Lapp, Montoya and Klimas).

    The audience will be able to ask questions of the experts after each session.

    The Patient Agenda can be read in full: HERE

    "Integrative conference themes will focus on fatigue, post-exertional malaise, pain, sleep, pediatrics, cognition, and brain function in CFS/ME and Fibromyalgia. Research and clinical topics will also encompass fatigue in diseases including cancer, autoimmune diseases, multiple sclerosis, pain conditions, mood disorders, and circulatory diseases.

    In addition, studies on fatigue in sleep, aging, exercise and sport, and occupations will be welcomed. Different sessions will address advances in assessment and treatment (from biological to behavioral) as well as new developments in virology, immunology, and neuroendocrinology.

    We also anticipate new topics such as mentoring/career development, clinical fatigue education in medical schools and public health policy with respect to fatigue."

    Please note: Early Bird Discount now extended to 14th February!!

    The patient-only day will cost $55 for IACFS/ME members, and $95 for non-members (including a one-year associate membership), if you register by 31st January.

    Standard Rate: The cost for the patient-only day goes up to $80 for IACFS/ME members ($120 for non-members) on February 1st and will be $105 ($145 for non-members) at the door.

    Patients can also also attend the entire conference for $550 if they join IACFS/ME.​

    Additional Conference Information:

    Full Details: HERE Professional Agenda: HERE Conference Registration: HERE Hotel Information: HERE

    The Stanford Symposium

    There will also be a separate one-day ME/CFS symposium run by Stanford on March 19th, which is targeted primarily at health-care providers but patients and caregivers can register as Allied Health Professionals.​

    Registration for the symposium costs $75 and can be completed online: HERE

    More information: HERE or contact Yolanda Cervantes (ycervantes@stanfordmed.org)​

    Many of the speakers at the Stanford conference will also be speaking at the IACFS/ME conference.​

    Interview with IACFS/ME President, Dr Fred Friedberg

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    We interviewed Fred Friedberg, to try a obtain a better understanding of the the conference and his organization, and also to ascertain his views on issues that are currently important in the ME/CFS community including the Institute of Medicine:

    The Conference...

    Can you give us a preview of the conference? Do you have any pre-publication research that you can reveal to our readers? Do you know if any of the researchers with high-profile studies, such as Montoya and Lipkin, will be releasing any new research?

    The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for clinicians.

    We do have several high profile speakers, including Ian Lipkin, MD, the “master virus hunter” according to the New York Times, and the lead investigator of a multi-site study that definitively found no link between the XMRV virus and CFS/ME. Dr. Montoya will talk about antiviral medications at the patient meeting – a first for the patient day agenda.

    We also have as our keynote speaker, Stanford physician and best-selling author Abraham Verghese who will speak on the importance of the doctor-patient relationship in the context of high tech medicine. An expert on autoimmune disease, Noel Rose, MD, PhD will be our plenary speaker.

    New research will be presented largely during the 3 day research and clinical conference.

    The conference is not specific to ME/CFS as it is also covering fatigue in other illnesses. Approximately what percentage of the conference will be focused specifically on ME/CFS? What do you feel that ME/CFS patients can learn from research into fatigue in other illnesses?

    The conference does cover fatigue in other illnesses, but the vast majority of the meeting is focused on CFS/ME. We can learn a lot from fatigue in other illnesses. For instance, I learned about a home monitoring system for autonomic functions (heart rate, skin temperature) from a study of fatigue in MS.

    When we are exposed to how illness fatigue is studied elsewhere, it can generate new ideas and collaborations about how to study CFS/ME. When we only talk to each other, important possibilities for research progress may be missed.

    How much of the conference will be focused on behavioral therapies vs. biomedical research/treatments? Do you think any of the current biomedical treatments are beneficial to patients?

    We have a treatment session which is largely non-pharmacological (not necessarily behavioral). It is unfortunate that very little in the way of treatment studies is being done. Biomedical treatments may be somewhat helpful to some people, but they rarely produce the big improvements we would all like to see.

    Can we pay for the conference and have web access for those that cannot travel but want to be there? Will there be transcripts and/or recordings available after the conference?

    There may be a recording of the conference. No web access however.

    Does the Stanford day-conference require a separate registration?

    Yes, it does. It’s a separate meeting.

    Is there any financial support available for patients without the means to pay the full cost for the patient conference?

    Unfortunately, we do not provide financial assistance for attendees. However, a donor may earmark a contribution to assist patients with registration fees. That said, our registration fee for the patient conference is about $100, much less if you are a member of IACFS/ME.

    That’s a fraction of the general conference tuition. Also the patient meeting agenda includes some of the highest profile scientists and clinicians both in and out of the field talking about a range of current subjects of direct interest to individuals with this illness–from medications to self-management to exercise intolerance.

    In my view, that is good value for the cost.

    The International Association for CFS/ME...

    Can you tell us a little bit about IACFS/ME and your vision, mission, and how you hope the organization will achieve or contribute positively to the understanding and more effective treatment of ME/CFS?

    The mission of IACFS/ME is increase research funding and improve patient care in CFS/ME. The organization is on the front lines of scientific advocacy with our publication of timely position statements on critical issues (PACE trial, DSM5).

    Board member Lily Chu in collaboration with Lenny Jason conducted and presented a ME/CFS survey at the US Food and Drug Administration Drug Development Workshop late last year.

    Further, we published a CFS/ME Primer for Health Practitioners in 2012 and we will be presenting the 2014 revision of the primer at the San Francisco conference. The primer is available in a spiral bound print version at Bookpatch.com.

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    Finally, we are sponsoring a peer review journal, "Fatigue: Biomedicine, Health and Behavior", published by Routledge, a major academic publisher, that is now one year old. A subscription to the online journal is automatic with professional membership.

    We have published many studies on CFS/ME in the journal including scientific reports on the case definition, brain neuroimaging, gene expression, and post-exertional malaise.

    We are also open to publishing medication trials in CFS/ME as they become available.

    Is IACFS/ME a member-organization? If so how do we join and do members get any voting rights?

    Both professionals and patients are welcome to join IACFS/ME, a nonprofit organization. Professional members have full voting rights and receive an online subscription to our peer review journal.

    Patient memberships are available at a much reduced cost. Patient membership includes our 3x a year newsletter, all of our eblasts on current topics in the field, and discounted registration at our biennial conferences.

    The Institute of Medicine...

    What are your thoughts on the new IOM committee? Has the committee been invited to the conference?

    IACFS/ME has not taken an official position on the IOM committee, given a diversity of views about it on our board.

    The committee has not been invited to the conference, as the mission of IOM as an independent organization would preclude their attendance.

    Since your organization approved of the IOM study to re-define ME/CFS, how do you feel their study will improve on the Primer produced by the IACFS/ME?

    IACFS/ME did not formally endorse the IOM effort to recommend a case definition for CFS/ME, although I expressed hope for a good outcome in my presidential letter to the membership.

    When we have the IOM report, then we can discuss how it might affect the Primer.

    Final thoughts...

    What are you most looking forward to this year with regards to positive developments in ME/CFS?

    I would like to see a conference where our attendees feel that they have learned something of significance which will help them in some important way in their professional or personal lives.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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    Last edited by a moderator: Feb 4, 2014
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  2. Firestormm

    Firestormm Senior Member

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    Article amended.
    searcher likes this.
  3. Firestormm

    Firestormm Senior Member

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    Valentijn likes this.
  4. Firestormm

    Firestormm Senior Member

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    Phoenix Rising Arrangements for Conference Reporting

    Phoenix Rising holds a press pass for both conferences and we will be able to report on events as they unfold - other than the embargoed elements of course :)

    We have a very kind volunteer who will be attending both venues for us and for all 5 days, and the current plan is for a daily article/blog to be published from Thursday , March 20, and then each day for 5 days.

    These will be based on the notes that have been submitted the previous day, and with an accompanying opinion piece or impression of that day's event. So we should be able to report on the previous day's proceedings in some depth.

    We will also be tweeting news and updates as our volunteer submits her notes to us live and you should be able to follow our twitter feed from the forums and/or website home page once the appropriate 'gismo' has been installed.

    Once the conferences are completed, and our team of writers have been able to listen to the recordings that will be made, we should be in a position to publish more in-depth reviews of the presentations and of the speakers with perhaps accompanying post-conference interviews.

    These 5 days present a very obvious challenge for anyone with ME and so we are especially grateful to our volunteer in this instance for allowing all of us some insight into what will take place, and health permitting we will do our very best to get this information out to you in a timely fashion.

    All of this is subject change of course and depends a great deal on the efforts of our voluntary team. But if it does go according to plan we should be able to provide you all - and others - with some quality reporting.

    So stay tuned :)

    For information these are the agenda's for the conferences once again:

    Stanford: HERE

    IACFS/ME Patient Day: HERE

    IACFS/ME Professional Days: HERE


    We should be able to provide commentary of both the Patient and Professional presentations that occur at the same time on the 20th - all being well and our volunteer having the support that is planned in place.
    SOC, alex3619, Valentijn and 2 others like this.
  5. Sasha

    Sasha Fine, thank you

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  6. Firestormm

    Firestormm Senior Member

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    We should have a twitter feed established shortly. The notes that can be viewed by members are now available to read and comment upon in a thread in our member's area.

    Please visit the live blog here.

    Our Twitter feed is available on the Home page of our website and will shortly be populated with feed from the conference (look on the right-hand-side of the Home page).

    You will be able to view the tweets here on the home page of our website.

    Or via Twitter here.
  7. Leopardtail

    Leopardtail Senior Member

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    Firestorm where will we find those articles from PR's intrepid reporter?
  8. Leopardtail

    Leopardtail Senior Member

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    oops link already present.
    Firestormm likes this.

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