IACFS-ME Patient Conference on October 27, 2016

[Tom Kindlon]

[Announcement about the IACFS/ME conference in October. Note the discounted rate if you register on or before September 26. Tom]



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Do you or someone close to you suffer from chronic fatigue without a clear cause?

ave you heard about chronic fatigue syndrome, myalgic encephalomyelitis, or systemic exertion intolerance disease (SEID) and wondered what those terms mean?



What are the latest developments in these and other related conditions?



Come to our international scientific conference October 27-30, 2016 in Fort Lauderdale, Florida to find out the answers to these and other questions!



The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) and the Institute for Neuro-Immune Medicine at Nova Southeastern University (NSU) cordially invite you, your colleagues, and members of the public to attend IACFS/ME’s 12th Biennial International Scientific Conference!



Highlights of the conference include:



A day-long series of talks October 27 aimed at patients and their caregivers – hear from national and international experts!



A choice of 5 different afternoon workshops to attend



Dr. Vicky Whittemore and National Institutes of Health staff discussing their renewed ME/CFS research program



Drs. Øystein Fluge and Olav Mella from Norway along with Dr. Dan Peterson discussing the latest in treatment options and research



A rest and relaxation room to take a break.



Presentation of the latest research and special discussion forums October 28-30. The public may also attend these days for an extra fee.



REGISTER BEFORE SEPTEMBER 26 AND GET A DISCOUNTED CONFERENCE RATE!

Visit www.iacfsme.org for more information and to register for the meeting. There will also be a separate pre-conference session hosted by the Institute for Neuro Immune Medicine Oct. 26. Visit their site http://www.nova.edu/nim/iacfs-2016-preconference/index.html for more information. Spread the word!

 

[duncan]

Do you or someone close to you suffer from chronic fatigue without a clear cause?

Are they casting a wider net? This is how one begins an ME/CFS conference promo?

 

[medfeb]

Bumping this to remind everyone that the discounted rate for the IACFS/ME conference ends on September 26. If you are planning on going, you can save money by registering now. The cutoff for the discounted hotel rate is September 25.

The conference agenda is here

Nova is holding a pre conference event. Information is here. It looks like registration for that opens on October 1.

Are they casting a wider net? This is how one begins an ME/CFS conference promo?

I understand your point, Duncan, especially given the history of dismissal and redefinition as unexplained chronic fatigue. If I understand correctly, the flyer is also being used to try to reach a broader audience than the ME community - e.g. patients - and their doctors - who may not yet know what's wrong. Because of the dismal state of awareness of ME, that audience understands little about the disease or symptoms like PEM, just the symptom of fatigue.

Edit: it looks like the hotel's deadline for discount registration might have changed to the 30th

 

[Glycon]

I understand your point, Duncan, especially given the history of dismissal and redefinition as unexplained chronic fatigue. If I understand correctly, the flyer is also being used to try to reach a broader audience than the ME community - e.g. patients - and their doctors - who may not yet know what's wrong. Because of the dismal state of awareness of ME, that audience understands little about the disease or symptoms like PEM, just the symptom of fatigue.

Also, let's not kid ourselves. ME/CFS doesn't have a clear cause. Dismissing the psychiatric interpretation does nothing to change that. Nor does insisting on viral onset as a diagnostic criterion. To suggest otherwise is wishful thinking.

 

[medfeb]

Also, let's not kid ourselves. ME/CFS doesn't have a clear cause. Dismissing the psychiatric interpretation does nothing to change that. Nor does insisting on viral onset as a diagnostic criterion. To suggest otherwise is wishful thinking.

I'm not sure I understand what you are responding to, Glycol. I did not insist on a viral onset as a diagnostic criterion and did not say that the cause of ME is settled. Did it come across like I was saying that?

 

[Tom Kindlon]

Not sure yet if you want to attend the IACFS/ME's 12th International Scientific Conference? Here are two additional late-breaking events on October 27th:

1) Advocacy Roundtable, hosted by Charmian Proskauer and Mary Dimmock. Anyone interested may participate. The conference is a rare occasion for patients, caregivers, researchers, and clinicians from all around the US and the world to meet face-to-face. This session allows anyone interested in advocacy to learn about and discuss issues affecting the community internationally.

2) Free screening of "Forgotten Plague", directed by Ryan Prior and Nicole Castillo. Hailed a "Must-See Documentary" by the Huffington Post , this movie tells the story of ME/CFS through interviews with patients, clinicians, and researchers. After Ryan Prior came down with ME/CFS in 2006, he embarked on a journey to to find out why the CDC and medical system had neglected his disease, leaving millions sidelined from life. The film chronicles Ryan's journey, allowing us to follow along.

 

[Mark]

It's almost certainly too late for me to be mentioning this, but just in case...if anyone is attending the conference (or would like to attend) who would like to do some tweeting for Phoenix Rising, or write an article (about anything really, whether it be some or all of the science, or the experience of attending the conference, or whatever) then Phoenix Rising would be able to pay for some or all of your expenses, and there's also the option of paying you for one or more articles, depending on what you might like to do in terms of tweeting or articles. If you're interested, please start a Conversation with me.