Discussion in 'General ME/CFS News' started by Ember, Feb 28, 2013.
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Translating Science into Clinical Care
Glad to see - thanks for posting!
Are we witnessing IACFS/ME mission drift here? Compare the focus of their conference with that of their journal (emphasis added below):
Looks like Julia Newton and her results will be announced/discussed at the meeting:
Full Disclosure: I am one of the people helping to plan the IACFS/ME Conference.
There are two reasons why I agree with the way the call for abstracts is phrased: one is scientific and one is practical.
There is a lot to be learned from folks in other fields. For example, fatigue in breast cancer , autoimmune illnesses, and aging are thought to be mediated by cytokines to some degree. This might also be true of CFS. In breast cancer specifically, there's a lot of work right now looking at why some people remain extremely fatigued, mentally dulled, and have difficulty sleeping (i.e. symptoms similar to CFS) months, years after they have undergone appropriate treatment for their cancer and there is no longer evidence of cancer. Not too long ago, that fatigue was attributed to psychosocial reasons but new work indicates that the people post-cancer-treatment who remained fatigued in fact have genetic profiles where their genes associated with cytokines tend to be "more sensitive" and remain "on" after other people's have turned "off". (I'm simplifying here but you get the idea.) This is reminiscent of CFS. Remember the Australian Dubbo studies? They showed that the folks who were still affected after 6 months were those who monitored a more vigorous immune response initially.
So, inviting folks from other fields could lead to ideas, insights, treatments that have not been explored in CFS. In addition, this is a way to introduce them to and educate them about CFS. As you know, most clinicians/ researchers today have not been well-educated about the illness. Some researchers might even consider using CFS subjects as comparison subjects in their future studies. (One funding strategy of CFS researchers like Baraniuk has been to use CFS subjects as comparisons subjects for Gulf War Illness as GWI is better funded.) Fields like cancer and aging have a lot of research dollars, recognition, and plenty of researchers attached to them. While we work on a long-term strategy to increase CFS funding/ recognition/ etc., this is one way to move the field forward short-term.
On the practical side, if we restricted abstracts to only those involved with ME/CFS or FM and attendence to people who studied ME/CFS, we would not be able to hold a conference or survive and grow as a organization.Conferences are important; it's where scientists, researchers, and others can meet face-to-face, present cutting edge ideas, and form collaborations. Even in this age of the Internet, nothing beats in-person communication. But even stripped down conferences require money -- to pay for the conference space, the audiovisual services for the lectures, etc.
Most nonprofit scientific organizations are supported by member dues. There are simply not enough ME/CFS-focused professionals and while we can work to grown the field, there's no magic wand right now that can conjure more members instantaneously. So we work to recruit professionals from other fields that overlap with CFS in hopes they will become interested in CFS. This is good for patients too -- most CFS clinicians and researchers are aging and there aren't younger folks to take over their work.I also think the entire ME/CFS community benefits from having a strong professional organization, one that can produce a credible work like the IACFS/ME Primer written or can provide a counterweight to GET/ CBT treatment recommendations.
Another reason IACFS/ME will not "creep" too far is many of its members (yes, clinicians, researchers, board members, patients, and volunteers) have CFS, including yours truly. I would not support an organization with the limited energy I have if I did not believe that it could help me get better. I don't do things mindlessly, with no goal in mind, just for kicks.
Any idea who else is attending/presenting at your conference?
On a separate note, recognizing that patients and their families want to learn more, IACFS/ME holds a Patient Conference on the first day of every Conference and also has a dedicated "rest" room for people to sit or lie down quietly during the hours of the Conference.
The Patient Conference this year is on Thursday, March 20, and will cover topics like the latest findings/ treatment in ME/CFS, FM, pediatric CFS, applying for disability, how to approach activity/ exercise safely, etc. Topics to be determined for sure in the near future. Registration information is not ready yet but you can sign up for updates via the IACFS/ME homepage at www.iacfsme.org.
Patients and family members can also stay for the entire 4-day conference but it will be more expensive than attending only the Patient Conference and the last 3 days are technical scientific talks.
IACFS/ME also welcomes patients and family members as associate members. Associate members get our Newsletter three times a year and have the chance to purchase access to our online journal. Members also get a discount on conference attendence fees.
Link for more info: http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx
To elaborate a little further on a point Hope123 made, there is potential benefit from a little mission creep if its targeted carefully: it exposes doctors researchers from other fields on fatigue and related conditions to ME research. That alone might be worthwhile. One of the big hurdles we face is ignorance, even in the scientific and medical communities.
We have some set speakers but we also try to keep it fluid to some degree.
Scientists and clinicians are submitting possible presentations right now -- like Julia Newton -- and we select speakers partly based on which research projects look most promising and interesting. Also, if there is late-breaking news, we also try to fit that in.
For the set speakers, the opening keynote speaker is Dr. Abraham Verghese who is famous both as an Stanford University infectious disease doc and a 3-time New York Times best-selling novelist. His last book, Cutting For Stone, was on the NY Times book list for almost 2 years. Dr. Verghese became interested in CFS from his exposure to patients in the past and also because of his interest in getting MDs to really listen to patients' stories rather than rely on only diagnostic tests.
Our second speaker is superstar immunologist Dr. Noel Rose who is the Director of the Center for Autoimmune Research at Johns Hopkins University. Dr. Rose is known as the "father of autoimmune disease" in the US as he discovered the first autoimmune disease (hypothyroidism) and established criteria for what is an autoimmune disease. Dr. Rose has some familiarity with CFS already.
The Conference usually attracts 150-200 professionals and 200+ patients/others. If you've ever want to hear any of the clinicians/ researchers mentioned on this forum in-person this is your chance. People like Lenny Jason, Nancy Klimas, Staci Stevens, Cindy Bateman, Jose Montoya, Chuck Lapp, Ros Vallings, etc. routinely attend IACFS/ME. There are also other well-known scientists but they need to be confirmed first.
As I am based in Newton-land i.e. across the pond from yourself: I don't suppose you'll be live-streaming or even recording and posting somewhere on the web?
Sounds to me like it will be a fascinating conference and an amazing accomplishment for you. I am in awe. Lots of hard work in organising such an event - I can of course only imagine. Well done you
Thanks. It is a big undertaking but there are several people involved and fortunately, some of them are healthy! But practically everyone is a volunteer (except 2 people who specialize in conference management).
If anyone wants to help out - whether ongoing or onetime - with fundraising, publicizing the conference to scientists, or at the event itself - you can send me a PM. Things can be done remotely. We don't pay as I say but we can offer other benefits to volunteers. But I'm only here once a week or so so if you write, have some patience.
People can also help us by taking a look at our supporter brochure. I've attached it to this message. We've tried to put together opportunities and benefits that different types of people might find interesting......ranging from if you're a patient/ advocate who wants to sit at a dinner table with Dr. Peterson or support particular educational talks to if you're a business looking to sell your product or reinforce loyalty with ME/CFS/FM patients/clinicians. So even if you can't contribute $$, think about businesses that can. We're also open to other ideas people have. As a nonprofit, contributions are by and large tax-deductible for US residents.
In terms of Internet access to the Conference, this comes down to finances. If you take a look at the brochure, we have an item called "Virtual Patient Day". We added that because we understand there might be people who are too sick to attend the conference in person. If someone or some group funds that, then we can consider having it online. Online access depends on three things: staffing costs to record the conference, editing/ uploading video costs, and then a site to host the videos. Live streaming is more difficult as the bandwith required would cost several thousand dollars a day more.
Some years we do get adequate financing so some materials are uploaded online like the 2011 Dr. Komaroff summary:
One thing US residents might want to check out is whether they qualify to deduct travel and conference registration fees off of their taxes:
"Some medical conference costs. You can count admission and transportation expenses to the conference if it concerns a chronic illness suffered by you, your spouse or a dependent. Meals and lodging costs while at the seminar, however, are not deductible."
Stanford University and K-PAX Pharmaceuticals Studying New Treatment for CFS
Tue, 03/04/2014 - 9:29am
“The results of this trial will be presented at the International Chronic Fatigue Syndrome Biennial Conference (IACFS/ME) to be held at the Parc 55 Hotel in San Francisco this month (March 20-23).”
I must admit I didn't post that because when I read it and hit the links it seemed the trial was still ongoing - so I couldn't see how results might be presented at the conference? But maybe it will be an update or something that is presented. Or I got the trial dates wrong. Quite possibly the latter. I've had a lot to read lately.
You can also try a Google Site Search
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