Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

Sasha

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Sasha

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Today's programme:

IACFS/ME said:
12th International IACFS/ME Biennial Clinical and Research Conference
Emerging Science and Clinical Care
Thursday, October 27th


8:00 am – 8:20 am
Welcome and Introduction
Dr. Fred Friedberg

President, IACFS/ME
Research Associate Professor, Stony Brook University
Founder and Editor, Fatigue: Biomedicine, Health and Behavior
Nova Southeastern University and local officials, to be determined

8:20 am – 9:15 am (last 15 min. are Q and A)
Keynote Address
New ME/CFS Developments at the National Institutes of Health
Dr. Vicky Whittemore

Program Director, Channels, Synapses and Circuits
National Institute of Neurological Disorders and Stroke
United States National Institutes of Health

9:30 am – 12:30 pm
Professional workshops (run concurrently; attendees select one only)


Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities/Environmental Sensitivities: Office Assessment and Management
Alison Bested, M.D., F.R.C.P.C.

Clinical associate professor, Department of Medicine, University of British Columbia

Learn to diagnose and treat the patients with complex chronic medical conditions in your office.

Acute and Chronic Enteroviral Infection
John Chia, M.D.

UCLA School of Medicine

The workshop entitled “Acute and Chronic Enterovirus Infection” is for professionals who would are interested in these virus infections and association with ME/CFS. Nurses, nurse practitioners, physician assistants, physicians, researchers, epidemiologist will gain basic knowledge to recognize and diagnose these medical conditions and learn to associate these infections with ME/CFS.

How Cardiopulmonary Exercise Testing Informs Pathology and Treatment
Mark Van Ness, Ph.D.

Department of Health, Exercise, and Sport Science, University of the Pacific
Christopher Snell, Ph.D.
Scientific Advisor, WorkWell Foundation
Betsy Keller, Ph.D.
Department of Exercise and Sport Sciences, Ithaca College

Cardiopulmonary exercise testing (CPET) is a data collection paradigm that accurately and objectively describes the post-exertional response that ME/CFS patients experience. CPET will be described, including its utility for understanding ME/CFS pathology. Information will be presented about how the post-exertional state is particularly useful for data collection pertaining to immunological, neurological and hormonal conditions.

1:30 pm – 4:30 pm
Professional workshops (run concurrently; attendees select one only)


Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia
Fred Friedberg, Ph.D.

President, IACFS/ME
Research Associate Professor, Stony Brook University
Founder and Editor, Fatigue: Biomedicine, Health and Behavior
Leonard A. Jason, Ph.D.
Professor, DePaul University

In this introductory workshop on CFS/ME and fibromyalgia (FM), participants will learn about practical methods of behavioral assessment and individualized treatment strategies. Our approach consists of self-management focused interventions and non-pharmacologic strategies for clinicians that can offer realistic hope for improvement in these patients. This workshop will benefit clinicians who work with CFS/ME and FM patients.

Diagnosing and Treating Orthostatic Intolerance
Peter Rowe, M.D.

Johns Hopkins University School of Medicine

Postural tachycardia and hypotension in response to orthostatic stress are common in those with ME/CFS. These circulatory disturbances contribute to ME/CFS symptoms and lower quality of life. This workshop will help clinicians identify and treat common forms of orthostatic intolerance in their patients with ME/CFS.

NIH Grant Writing Workshop
Vicky Whittemore, Ph.D.

Program Director, Channels, Synapses and Circuits
National Institute of Neurological Disorders and Stroke

The NIH Grant Writing Workshop will review skills that are critical for becoming a successful grant applicant.
 

Mark

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I've notified our team at the conference about this thread, so hopefully there'll be an opportunity (in a very busy day for them) to keep an eye on it and just maybe pass on some questions to the presenters, or answer some of your questions themselves. But of course it's hard to do everything...listening, tweeting, and taking notes may be quite enough for them to contend with!...but anyway, let us know if there's anything on the agenda that's of particular interest to you (other than Whittemore and Peterson/Fluge/Mella, of course...).
 

Sasha

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Just looking at Cort's Twitter feed and he was tweeting all day yesterday, which I hadn't realised - hope he'll keep that up today and in the days to come! Hope our PR tweeters can manage something too. I'm sure it's not easy! :)
 

Sasha

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From another thread:

Geoffrey Hallmann said:
New
#IACFSMEConf

Morning everyone. We have just begun the conference with an introduction by Fred Friedberg, President of the IACFSME Conference for 2016. He has provided an overview of an exciting agenda for the patient conference today and for the days coming ahead.

Vicky Whittemore from the NIH has just been introduced and will given the keynotes speech this morning on the NIH Research into ME/CFS.
 

Sasha

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@Sasha not live feed for today?
Not that I or @aimossy are aware of, but that doesn't mean that there isn't! :)

If anyone becomes aware of a livefeed, I hope they'll post.

@Mark, that's a useful question for one of our on-the-spot people to ask.

@Geoffrey Hallmann - a bit cheeky to ask you for a favour immediately you join the forum but are you able to find out, if you're at the conference? We'd all love to follow a livestream, if there is one! :)
 
Hi Guys .... I am currently at the conference. We have just had an introduction from Fred Friedberg who has outlined the conference for the next four days, and particularly to speakers and workshops for today.

Currently listening to Vicky Whittemore from the NIH who has provided an extensive outline of the NIH approach to ME/CFS Research.

Of significance is the fact that the NIH has never had an application from a young researcher for an NIH grant for ME/CFS. They have put this down to the fact that researchers were scared away from the field. They are actively encouraging grant applications in this area in order to build the research pool.

Internationally speaking, the NIH is looking to develop collaboration and provide funding to international research.

NIH Website: www.nih.gov/mecfs

NIH are doing a grant research workshop this afternoon to look at how to be successful at grant applications to the NIH
 

Ysabelle-S

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Hi Guys .... I am currently at the conference. We have just had an introduction from Fred Friedberg who has outlined the conference for the next four days, and particularly to speakers and workshops for today.

Currently listening to Vicky Whittemore from the NIH who has provided an extensive outline of the NIH approach to ME/CFS Research.

Of significance is the fact that the NIH has never had an application from a young researcher for an NIH grant for ME/CFS. They have put this down to the fact that researchers were scared away from the field. They are actively encouraging grant applications in this area in order to build the research pool.

Internationally speaking, the NIH is looking to develop collaboration and provide funding to international research.

NIH Website: www.nih.gov/mecfs

NIH are doing a grant research workshop this afternoon to look at how to be successful at grant applications to the NIH
Looking forward to hearing more about today's events.
 
#IACFSMEConf

Whittemore just gave two indications about foreign grants:

1. Mega Study in UK - Would look at discussions on this. Thinks its interesting. Have not discussed with an UK researchers as yet.

2. Grants - Foreign grant applications have an extra level of scrutiny to them. The NIH would look at whether a foreign research site had a particular uniqueness to it - such as a specific expertise or cohort.