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Is Anyone Here Going to the IACFS/ME Conference in San Francisco?

Discussion in 'Upcoming ME/CFS Events' started by Gamboa, Mar 4, 2014.

  1. Gamboa

    Gamboa Senior Member

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    Hi all.

    This might already have been discussed elsewhere but I am curious as to how many patients are attending the conference in March in San Francisco. I am attending the full 4 days, traveling from Ottawa Canada. Is anyone else from Canada going?

    I hope to be well enough to attend all the talks and to take notes. I hope to be able to add to any reports that will be presented here on PR, as long as I don't have a major crash.

    Gamboa
     
  2. Wally

    Wally Senior Member

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    Gamboa,

    Not sure if people will respond to you on this thread because of where it appears. You might want to consider putting your question in the private members section of the Forum.

    Wally
     
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  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good for you! Sounds like it will be quite the adventure, and please do take care of yourself! Will be a lot of travel and potential stress.

    GG
     
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  4. August59

    August59 Daughters High School Graduation

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    Someone on the forum is going to both the Stanford presentation and then to the IACFS/ME conference. I think I found it by searching for the Montoya/Stanford presentation.
     
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  5. beaker

    beaker CFS/ME 1986

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    I look forward to your report back. I hope you are able to spend enough time out there to enjoy more of the bay area then just the conference. I love SF. I was living there when I got sick.
    I must confess if I were flying out, I would find it hard to sit in a conference instead of hanging out in Crissy Field or some other such lovely spot w/ a view.
     
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  6. Gamboa

    Gamboa Senior Member

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    Hi Wally. Yes I wasn't sure where to post this. The layout of PR has changed a bit since I was last here ( or have I just forgotten what to do?)
     
  7. Wally

    Wally Senior Member

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    To all PR members or others in the MECFS community who will be going to Stanford and/or SF the week of March 17th, there will definitely be chances to meet up at both of these events. :cool:

    If you need any info. about traveling to Stanford or SF and/or you have questions about where to eat or what to do, especially if you need a breather from the conferences or you are coming in before or staying after these events, please feel free to ask. Both of those locations are very familiar to me and I would be happy to help out with answering questions. We can discuss general questions here and more personal questions can be put in a members only sub forum or can be carried out in a private conversation or e-mail. :balloons:

    For people who are not able to make it to Stanford or SF, I am sure that many people will be trying to share info., photos and/or video, where and when allowed. We are in this together and I hope that we can pay it forward if we are fortunate enough to participate in either of these events. :hug:

    It would be great if there could be a place on the Forum and elsewhere that people could know ahead of time where posts about these events could be grouped together. :nerd:

    Let's hope that the luck of the Irish will be with all of us the week of March 17th! :D

    Wally :)
     
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  8. searcher

    searcher

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    I will be attending the Stanford and IACFS/ME conferences and hopefully writing some articles for Phoenix Rising, barring any health setbacks. I am going to write you off-thread @Gamboa and would also be happy to answer any questions about traveling around the area. I know of one other patient who is planning on attending all five days and several who are attending the Stanford conference and the patient day at IACFS/ME, so we can try to all meet up the morning of the Stanford conference and can take turns taking breaks so we don't miss anything :)

    @Wally - Setting up a central location to share photos from outside the conference and reports is a fantastic idea. I will chat with @Firestormm to discuss the best ways to get something set up ahead of time. At a minimum, I think a daily thread would be great. We could also decide ahead of time on twitter hashtags so it's easy to see all of the tweets on the conference (something like #StanfordME and #IACFSME)
     
    Last edited: Mar 8, 2014
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  9. acer2000

    acer2000 Senior Member

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    Assuming my health is OK, I am planning on attending as well.
     
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  10. Hope123

    Hope123 Senior Member

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    Just FYI, as someone helping out with the Conference, please read the tips for attendees that were sent out at some point recently. The organizers are requesting that people not audio or videotape the talks except for specific press members. This is because materials presented are the property of those who present,

    ****************************************************************************************************************************

    Conference Attendee Guidelines and Suggestions

    1. Registration: The meeting will take place primarily on the 4th floor of the Parc 55 Hotel. Please proceed to the registration desk there on the first day to pick up your conference identification badge and banquet ticket. You will not be able to enter the lecture or workshop rooms without the badge so wear it daily. Bring an identification card with a photograph (e.g. passport, drivers license, work ID, etc.) so we can verify we are giving the right badge to the right person on the first day.


    2. Photography/ video and audiotaping: Photography, videotaping, and audio recording are strictly prohibited in the workshop/ lecture rooms or poster exhibit area.Because presentations, slides, and posters are the property of the speakers/ researchers, please refrain from photographing, video/audiotaping talks and materials. In addition, publicizing such materials early (e.g. via Youtube, Twitter, electronic forums, etc.) may jeopardize that professional’s chance of publishing in a peer-reviewed setting later.


    Members of the media wear media badges and those whom you see taking photographs and audio/videotaping have special permission; do not assume that if someone else is participating in these activities, it is permitted for everyone.


    If an attendee continues to break this rule after one verbal warning, IACFS/ME reserves the right to banish them from the meeting without refund of their registration/ banquet fee or other expenses (e.g. hotel, transportation, etc.).


    3. Help us achieve a chemical/ fragrance-free event as much as possible: Many ME/CFS patients and people without ME/CFS are sensitive to certain smells. Please have some consideration for your fellow attendees. To promote such an environment, we ask that participants refrain from the following before or during the event: smoking; wearing colognes, perfumes or scented oils; and using chemical based laundry detergents or fabric softeners. We also ask participants to wear something that has had limited exposure to the items above. Finally, please note that the Parc 55 is a smoking-free hotel and smoking is not allowed within public areas of the hotel. Smokers will need to step outside the hotel to smoke.


    4. Patient Quiet Room: Each day of the conference during meeting hours, a room on the Conference floor is set aside as a place for patients to rest and relax. Signs will designate this room. A number of chairs and recliners will be made available. This year, New Realities, a company offering relaxation programs to help with sleep and chronic pain, is sponsoring the room. Patients are not obligated to try or buy their program in order to use the Quiet Room but please do check it out if you can and thank them for their sponsorship.


    5. Please visit our webpage of Conference supporters and say “Hi” to supporter representatives if you see them at their tables or during the Conference. Click here or see our program book which you will receive on the day you arrive at the meeting. These generous individuals and companies help make this meeting possible.


    6. A few weeks before the meeting, we will send out another e-blast concerning travel tips about the San Francisco Bay area. To start planning now, one website you can visit is San Francisco Travel the official city tourism website. For attendees with special needs (e.g. handicapped access), you can talk to Parc 55 Hotel staff or San Francisco Travel for more information. Also, search online for “San Francisco Access Guide” to download the 2007 guide for disabled tourists/ residents. Information in the Guide should be confirmed given its older date.
     
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  11. Wally

    Wally Senior Member

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    @Hope123 - Thank you for posting this information. I am registered to attend all 4 days of this conference and I have not seen the information you posted about the conference either in an e-mail or thru snail mail. Not sure if this was just a small glitch in the mailing or if others registered for the event have also not received this notification?

    Wally (P.S. - Checked my Spam Folder to make sure the message had not been directed there, but no message appears to have been received.)

    Edit - I have contacted the IACFSME to let them know that I (and apparently others) did not receive the "guidelines and suggestions" for conference attendees.
     
    Last edited: Mar 7, 2014
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  12. acer2000

    acer2000 Senior Member

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    I didn't get them either. But good to know.
     
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  13. bel canto

    bel canto Senior Member

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    I'll be at Stanford on the 19th, and, hopefully, attending the patient day in San Francisco on the 20th. Looking forward to it, and hoping for major news!!
     
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  14. Wally

    Wally Senior Member

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    @acer2000,

    I contacted the IACFSME and I was told that the guidelines were included in an "e-mail blast" that was sent out in mid February (I think there have been additional e-mails sent since this time). I located this e-mail in my deleted e-mail folder and it appeared to me to be a solicitation to attend the conference. Since I had already signed up to attend the conference and my payment and reservation had been confirmed, I deleted the message after reading the first paragraph. (I have attached the e-mail below for your review, it should be noted that the correspondence is dated 2/12/2014, but it was apparently received in my in-box on 2/11/2014).

    I would never have realized that this "e-mail blast" contained information on how I needed to check in for the conference or the prohibitions in place for dissemination of information shared at the conference. I would have thought that this information because of its importance would have been something that the IACFSME wanted to clearly point out to attendees and not just include at the bottom of their solicitation letter. Perhaps this is just a problem for my cognitively challenged brain, but from the e-mail responses I have received from other attendees I am glad to see that this may have been an issue for a number of other people as well.

    I have made a suggestion to the IACFSME Conference Coordinator that the guidelines and instructions be disseminated to individuals who have signed up to attend the conference in a manner where it will be apparent that they are receiving instructions and guidelines that need to be reviewed prior to attending the conference. Not sure if my suggestions will be welcome, but I have pointed out there appear to be other people who missed seeing this information in the solicitation "e-mail blast" and it could create a bit of confusion on the first day of the conference.

    Thank you @Gamboa for starting this thread and @Hope123 for realizing that there was something amiss with the communication to attendees.

    Wally

     
  15. Gamboa

    Gamboa Senior Member

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    I am just reading your messages now and earlier today received the email ( probably thanks to Wally) from the IACFS/ME regarding the guidelines. I might be reading this incorrectly but does this mean that we can't comment on a forum such as this about things we see or hear during the conference? Is this new for this particular conference or is this standard practice? ( If so, a lot of us didn't get the memo at the last IACFSME conference, myself included.)
    I hope someone will be allowed to report something somewhere for all the ME/CFS sufferers who are unable to attend but are anxiously waiting at home for a play by play of each days events.
     
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  16. Wally

    Wally Senior Member

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    @Gamboa,

    I was glad to see a detailed information letter arrive from the IACFSME. They probably had this type of letter prepared to send out as the date to the conference got closer. I was just glad that we had a bit of a heads up before everyone was anticipating that information could be shared and preparations were made to set up central locations to disseminate the information.

    I have not been to a IACFSME conference before, so I don't know what type of prohibitions they had placed on information that was presented at past conferences. Maybe others who have written about these conferences would be able to remember how this was handled?

    I did go to Stanford today to listen again to Dr. Montoya's talk about his pathogen study. Last time I attended this talk I was a bit jet lagged from traveling all day and a bit foggy about all the details. I also missed out on watching the video of the talk because it was removed shortly after it was made available to study participants. (As a side note, it was my understanding from Stanford that they are not aware of this video or any proprietary information about the study being released publicly. It was my understanding that PR Forum representatives contacted Stanford with concerns that a patient(s) may have shared the password/link for this video with another patient (someone who was not a study participant). It was a result of Stanford receiving this information that the video was taken down to prevent the possibility of the video being viewed by individuals who were not study participants.)

    At today's talk, each person attending the talk was required to sign a non disclosure agreement. It was a 3 year agreement or until such a time as the information becomes available in the public domain. Notwithstanding the non-disclosure agreement, I believe I am not in violation of this agreement to say - :D:nerd::hug: - Thank you - Dr. Montoya and your team at Stanford (and Dr. Lipkin and your team at Columbia) for all the work you are doing to try to solve this illness. You Rock!

    I did ask Dr. Montoya how long he thought it would be until the study would be published and he thinks it will be another 6 to 8 weeks. I know - it is so frustrating to wait for the publication gods to do their thing. Good news is that this is just the first part of their study, so lots more things are in the hopper and the enthusiasm and excitement is palatable!

    I am hopeful that some of our wonderful ME/CFS writers will be able to write up some information about the symposium and conference that could cover information that would not violate the non-disclosure rules. Perhaps this is something that can be discussed and sorted out at the conference. My writing skills are not that great these days, but if all else fails we could give a daily fashion up date on the latest trends being worn by ME/CFS researchers/clinicians. :woot: :rofl:

    Wally

    P.S. - it was beautiful here in the Bay Area today - so be sure to pack a pair of sunglasses and cross your fingers that the nice weather stays in play next week. :cool:
     
    Last edited: Mar 11, 2014
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  17. Sasha

    Sasha Fine, thank you

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    BTW - I'm not going to this but I read the instructions telling people not to wear clothes that had been near ordinary detergent (I think) because of PWMCS. I would have wanted to comply but would't have known how, except to turn up naked! If they want people to rewash their clothes in something else, they should say so, I think.

    A bit late for me to be saying this - sorry!
     
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  18. Wally

    Wally Senior Member

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    @Sasha,

    The lack of clothing could be considered a fashion statement and if selected will be included in the daily fashion trending reports.
     
  19. Kina

    Kina Moderation Team Lead

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    Actually what happened @Wally was that a member who was a study participant independently contacted Stanford regarding a thread about the study/video. I received an email from one of the researcher's who asked that we remove any embargoed information from the thread. I asked her to review the thread in question and it turned out there wasn't anything that needed removing. She ask me to put a note on the thread re: the restrictions related to the video.
     
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  20. Wally

    Wally Senior Member

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    @Kina - I also contacted Stanford after you put up the "restriction" on a particular thread that was originally in the Public area of this Forum. The placement and wording of this restriction did create some serious confusion/concern online whether proprietary information from this talk had been released publicly.

    I did talk directly to the individual who you spoke to and this is the individual who told me that someone at PR informed Stanford that password(s) had been or were planned to be shared between a study participant and a non-participant. This was the reason the video was taken down and as you later clarified in a subsequent post in this thread (which was subsequently moved to the Private members only section of the Forum) there was nothing that any Forum member had done to release proprietary information about this talk.

    I assume from your posting above that there were additional concerns raised by a PR member about whether a particular thread(s) on the Forum released proprietary information from Dr. Montoya's talk. Perhaps if such situations arise in the future, it might be prudent to include the Forum member who "allegedly" included embargoed material in a thread to be sure that confusion/concern is not created by how and where an outside party's request regarding restrictions on a particular subject will be posted on the Forum.
     

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