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

[waiting]

I will be attending the 4-day conference (well, bits & pieces of it anyway). Are PR members meeting up anywhere?

 

[Undisclosed]

@Wally

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

***Any disclosure and/or distribution of the material presented in this video will jeopardize its future publication.*** Please do NOT forward this email, share this link or password with anyone and please ABSTAIN from posting excerpts on websites, blogs or any other type of media. We appreciate your discretion.

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.

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.

What I said was:

I had a email conversation with a doctor from the Stanford University team today. She simply wanted me to remind members not to post any information from the Conference. Nobody from PR has breached this at all. The doctor asked me to post a notice as a reminder in case something was unintentionally leaked. I have moved this thread to a non-public forum just as a precaution.

Kina

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.

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.

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.

 

[Gamboa]

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 . (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.

 

[waiting]

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 . (washed in scent-free detergent, of course).

@Firestormm, @Gamboa, @Wally, everyone else...

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.

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! Gluten-free, dairy free, sugar-free, etc. anyone?

 

[Firestormm]

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).

The tweeting of conference news and highlights does require volunteers to ensure a consistent flow of information to twitter (and then onto the forums).

We have several members of the content team based in the US who may be able to help us out - but we could always do with more.

So if you fancy tweeting on behalf of Phoenix Rising and using our account (and for a period of time (or shift) that you feel able to handle) the do please let me know.

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.

 

[Lcasey67]

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

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.

 

[Wally]

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! Gluten-free, dairy free, sugar-free, etc. anyone?

@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.

 

[Wally]

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

 

[Gamboa]

@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.

 

[Sing]

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.

 

[Firestormm]

@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.

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

 

[Hope123]

@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.

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.

 

[waiting]

@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.

That's great, @Wally! Thank you.

 

[waiting]

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.

Very useful info, @Hope123 -- thanks!

 

[Kati]

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?

 

[Starfive]

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.

 

[Hope123]

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?

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.

 

[Gamboa]

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.

I'm going but I might also be asleep! It would be nice if they put beds in the conference hall

 

[Gamboa]

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.

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.

 

[Hope123]

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.

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.