Your Dream Place for an IACFS/ME Conference: Take the Poll

[Cort]

Thanks for asking this question, Cort!

It's always interesting to see what locations people are interested in. A lot of the decision where to hold the meetings is based on FUNDING and RESOURCES. The average conference takes about 18 months to plan and costs close to $150,000 - $160,000 US each time because of conference facilities rental, staffing, and technical services (e.g. audio and visual services). Many volunteer hours are also put in to assure the science that will be presented is new (not just reviews), sound and reasonable (not everything submitted is accepted) and that talks and workshops are relevant to attendees.

Since the meeting was just held at Stanford University/ San Francisco in 2014, it is unlikely it will be held there again soon as rotating locations allow different mixes of patients, clinicians, researchers, and other people interested to attend. This is true of most professional and medical conferences. Some locations are also difficult because of poor/ lack of transportation and costs to many researcher/ clinicians/ patients/ others to attend.

And YES, the IACFS/ME is alive! We produce the the Fatigue journal that comes out every quarter full of ME/CFS research, a Newsletter which came out 3 times a year until recently, and do a lot of behind-the-scenes work, advocating on a national and international level. Because we are a very low-budget almost-all-volunteer organization, we spend most of our effort and resources doing the work rather than publicizing it. If there were more than 24 hours in a day and we each had three heads and eight hands, you would hear more from us! Our board members and volunteers are mostly healthcare professionals/ scientists who do medical research and/or take care of patients so this is on top of their usual workload.

If you would like to volunteer to help with the conference (we often have patient/ supporter volunteers) or can help contribute funds to a future conference, you can contact the main IACFS/ME e-mail box at

How to Contact the IACFS/ME
US Mail
The International Association for CFS/ME
9650 Rockville Pike
Bethesda, MD 20814

Phone

Voice Mail : 301-634-7701
Fax: 301-634-7099

Email

membership@iacfsme.org

(You can message me but I am not often on PR and the message needs to go through the usual channels anyway.)

Thanks Hope...

Any idea when you'll know the dates and times of the conference?

 

[maple]

Reno

 

[me/cfs 27931]

Note that Stanford is about an hour drive from San Francisco. Also, Stanford already has an annual ME/CFS conference.

Stanford is an excellent place to host a conference. Just wanted to point these things out.

 

[Strawberry]

Seattle please please PLEASE? It might wake up some medical people here. This region is so progressive and has some great minds, but mention CFS and their eyes immediately glaze over and they start grunting and dragging their knuckles on the ground!

 

[Hope123]

Note that Stanford is about an hour drive from San Francisco. Also, Stanford already has an annual ME/CFS conference.

Stanford is an excellent place to host a conference. Just wanted to point these things out.

There are several groups working on ME/CFS at Stanford. They work together on some projects and on others, they work independently.

Note that the Stanford event you are referring to was not sponsored by IACFS/ME but by the Open Medicine Foundation. When IACFS/ME held their 2014 meeting at Stanford, Dr. Davis' group was just starting whereas Dr. Montoya's group had been in operation for the last 7 years so we worked with Dr. Montoya.

The IACFS/ME's goals overlap with those of OMF (we both want answers to ME/CFS) but we have slightly different missions: for example, we work with a variety of researchers/ groups across across countries, publish a journal, hold international peer-reviewed conferences, and advocate with governments behind-the-scenes. OMF provide research funding and, on the whole, we do not.

Our conferences are also different from the other conference out there because we do not confine our speakers to who is already in this field, well-known, etc. Rather we welcome anyone to speak or present provided they send in a proposal during our open submission period and peer reviewers find it scientifically sound. (For non-scientists, there are rules about how to judge the quality of research that apply to all research, ME/CFS or not. Peer review ideally is NOT about whether a peer reviewer agrees with an idea or not but rather is the research sound enough to be presented?) W e have had people ask to speak without submitting any proposal and to me, that is playing favorites. Even IACFS/ME Board members and volunteers have to submit and undergo the review process. With limited time and space, it also may shut out people new to this field who have valuable ideas/ work to contribute.

 

[me/cfs 27931]

Note that the Stanford event you are referring to was not sponsored by IACFS/ME but by the Open Medicine Foundation.

I stand by what I said: Stanford is not in San Francisco (the poll says this) and Stanford has an annual ME/CFS conference. Nothing more.

Thanks for the additional information.

 

[Gamboa]

Thanks Cort for posting this poll.

I have been wondering where the next conference will be held and look forward to attending it, no matter where it is.

As a resident of Ottawa, I would favour Boston or New York City due to proximity to home and short flight. Having said that I would be willing to go most places since I so thoroughly enjoy these conferences and find them so inspirational. I am fortunate enough to be able to afford most flights and to have enough health left to be able to endure the flights.

Thanks, Cort, for your kind words regarding Ottawa. It is a lovely city but sadly not that ME/CFS friendly as people might think.

On a separate topic, but related, is everyone aware that there is a conference coming up next week in Montreal? And will you be there, Cort?

Claire ( Gamboa)

 

[kakapo]

Seoul. Why not..

 

[keepontruckin]

I like Toronto or perhaps Omaha Nebraska because it is central US and traffic is reasonable. Or Boston