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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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. waiting

    waiting Senior Member

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    I will be attending the 4-day conference (well, bits & pieces of it anyway:meh:). Are PR members meeting up anywhere?
    Firestormm and Gamboa like this.
  2. Kina

    Kina Moderation Team Lead

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    @Wally

    The 'restriction' came directly from the email that was sent to participants:

    There is nothing in my posts that suggesting anything had been leaked. A member was concerned regarding what had already been written on the thread and they contacted Stanford, Stanford contacted us and asked me to put reminder on the thread regarding the embargoed information. That's it. The suggestion that information had been leaked came from others on the thread.

    What I said was:

    My words were meant to indicate that nobody had posted anything on the THREAD that breached their request. I have no idea what members do in the back-channel via Conversation or personal email, I was saying there was no public breach of their request.

    I moved the thread as soon as I got the reported post regarding the possible breach in order to make things a bit more private while I investigated what was going on. I was actually asked to delete it but since it didn't appear to contain any embargoed information, we didn't feel that was necessary until somebody from Stanford had looked at the thread.

    There was one reported post regarding this situation. The person had already contacted Stanford. I had a Conversation with the person who reported the post. It wasn't necessary to include the forum member who allegedly included embargoed information because after reviewing the thread it didn't appear to include any such embargoed information and I quickly found out from Stanford that nothing had been leaked on the thread. If you were concerned at the time that my post wasn't clear then you should have said so at the time instead of bringing it up later for what reason I can't even fathom.

    We don't restrict members from posting anything. If they wish to post embargoed information they can as it doesn't involve a rule breach but certainly does involve personal integrity, ethical and moral values. Really, I could have just let it go. Rather, I did what seemed right to me and contacted Stanford just in case the research was being jeopardized. Turns out it wasn't. If there had been embargoed information, I would have removed it immediately and contacted the member who had put the information on the thread in the first place. That wasn't necessary though. Stanford asked me to put a reminder notice up on the thread which I did.

    Please stop complaining about this and posting assumptions and perhaps innuendo on a thread about the actions of others. I believe I have cleared this up as far as I can. Let's get this thread back on-topic. Any further questions and communication can be done via PM.

    Thank you.
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  3. Gamboa

    Gamboa Senior Member

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    Wow, this is all starting to sound very covert and top secret. I feel like I should be wearing sunglasses and a black trench coat :cool:. (washed in scent-free detergent, of course).

    Not knowing the hotel I don't know what to suggest regarding a meeting spot. Perhaps someone could make a little announcement during the patient day of talks such as "all PR people meet at the back during the next break". Or is that too out in the open? Do we need a more private method, perhaps with special codewords and secret handshakes? ;)

    OK, I need to have a sleep now. I'm getting delirious. :rofl:
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  4. waiting

    waiting Senior Member

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    I, too, know nothing of the hotel and area. Maybe @Wally has an idea?However, on Tripadvisor, it lists pretty good reviews for "Barbary Coast", a modest pastry and coffee shop (also sandwiches and a good breakfast selection) 'below' the hotel -- same address as hotel (which appealed to me because no walking involved!).

    Maybe we could meet for a coffee or lunch there on the 19th, if any of you are like me and planned a rest day prior to the start of the conference on the 20th...?

    Of course, what any of us are going to be able to eat there (or anywhere) is another matter entirely!:ill: Gluten-free, dairy free, sugar-free, etc. anyone?
    Last edited: Mar 11, 2014
  5. Firestormm

    Firestormm Guest

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    Phoenix Rising does hold a press pass for these 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 20 March for 5 days, based on the notes that have been submitted the previous day, and with an accompanying opinion piece or impression of that day's event.

    We will also be tweeting news and updates as our volunteer submits her notes to us live and then the tweets will be reposted on the forums for all to follow (to help those who don't use twitter and to better enable any subsequent discussion to take place).

    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 or conference interviews (you never know what might happen).

    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.

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

    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.
    Last edited: Mar 11, 2014
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  6. Lcasey67

    Lcasey67

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    I just found out about this conference and would love to attend but probably will not be able to. However, I do hope there is a way for all of us to view the presentations on-line after the conference is over. I wrote to the conference committee asking about this and am awaiting the reply.
    Gamboa and Sasha like this.
  7. Wally

    Wally Senior Member

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    @waiting - I have not eaten at the "Barbary Coast", but I will ask a few of my S.F. friends if they would give a thumbs up to eating there. I will also try to ask for friends to take a look at the "yelp" recommendations and let me know what restaurants they would also give a thumbs up to, so you can get some additional S.F. resident views, including any ideas for places that might cater to dietary restrictions. I will also try to get some recommendations where you can pick up a grab and go sandwich, soup or salad. I have some favorites, but I want to get some additional feedback so my recommendations will not be completely biased. ;)
  8. Wally

    Wally Senior Member

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    @Gamboa - Here is the "secret" handshake that will be used for the patient meet-up at the conference. :rofl:

    Gamboa, maryb and Sasha like this.
  9. Gamboa

    Gamboa Senior Member

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    @Wally - No one will ever notice us doing that handshake!

    @Firestormm- That's great news regarding reporting of the conference. By the way, completely off topic, I see you are from Cornwall, UK. I am also of Cornish descent. My mother is from Penzance and I have many relatives still there. Funny if we were related. I'll PM you later regarding this.
  10. Sing

    Sing Senior Member

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    My suggestion for helping people be free of "fragrances"--i.e., neurotoxic petrochemicals--is to wash your clothes in plain warm or hot water--a few times ideally. The fragrance chemicals are combined with sticking chemicals which is why they are so pervasive and long lasting. The sticking chemicals go into your body too, along with the fragrances. Anyway both these types of chemicals seem designed to stick to the detergent, so that if you wash your clothes out with plain water at least once, they have little or no detergent to stick to.

    Another caution is washing your hands in rest rooms that have fragranced, antibacterial detergents for soaps. These are very strong, very harsh, with powerful (nauseating) smells. Better just to rub your hands in plain water, is what I would say.
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  11. Firestormm

    Firestormm Guest

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    Afraid I am not of Cornish descent, Gamboa. I was born under a wandering star... Well in Hampshire actually :D
  12. Hope123

    Hope123 Senior Member

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    The Barbary Coast cafe is a small cafe on the ground floor near the hotel. It's not physically inside the building; the entrance is just outside the hotel driveway. It serves basic sandwiches, pastries, coffee, and other drinks. So nothing fancy but reasonable.

    If there are major dietary concerns, my suggestion would be to head to the Westfield Mall one block south (where Nordstroms is located, across from the Cable Car turnaround) of the hotel. There's a food court there that has lots of different choices, including Loving Hut which has vegan/ non-dairy/ gluten-free options of one type of another. This food court is not like your typical mall food court - San Franciscans love to eat so food quality and variety is excellent. It's also under $10 for many places.

    Another option is the Macy's Food Cellar in the basement of Macy's two blocks North. Again a court with many options but less local, more brand names.

    I would also advise people to just ask staff about choices. This is a city where many restaurants are in tune with different dietary needs, probably more than most.
    Gamboa likes this.
  13. waiting

    waiting Senior Member

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    That's great, @Wally! Thank you.
  14. waiting

    waiting Senior Member

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    Very useful info, @Hope123 -- thanks!
  15. Kati

    Kati Patient in training

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    Does anybody knows why dr Kogelnik, one of our ME experts living in the Bay Area, is mentioned nowhere on the conference agenda? How could he be left behind?
  16. Starfive

    Starfive

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    A big high five and thanks to the volunteer press rep for PR ! and at all who are going. I look forward to the coverage as I am unable to attend. Will most likely still be asleep. :sleep:
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  17. Hope123

    Hope123 Senior Member

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    Last year, conference organizers sent an open invitation to hundreds of scientists and physicians to submit proprosals for workshops and research abstracts. One deadline and two subsequent extensions were given. It is up to the decision of individual scientists and groups to decide whether/ how they want to participate.
  18. Gamboa

    Gamboa Senior Member

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    I'm going but I might also be asleep! It would be nice if they put beds in the conference hall :D
    vli likes this.
  19. Gamboa

    Gamboa Senior Member

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    Perhaps he has no research to report at the moment ( does he do research??). He will most likely be there, just not as a presenter.
  20. Hope123

    Hope123 Senior Member

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    Yes, I don't know what Dr. Kogelnik plans to do but not everyone who attends the meeting (or any scientific meeting for that matter) presents a talk. Some present posters and others attend to listen/ ask questions/ meet possible collaborators, etc.

    For those folks who have never attended a medical/ science conference before, there is more research being presented than what you see on the website. There are over 100 posters that are summarized in the program abstract book (but not on the website) that will be distributed to 3 or 4-day meeting attendees.

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