1st ME/CFS Canadian Collaborative Conference

I'm a bit confused, Patients can attend on the 4h but can also do some things on the 3rd and 5th or are they unrelated?
 
Chris said:
From what I've heard the following can be expected:

Lucinda Bateman
Peter Rowe
Maureen Hanson
Alison Bested
Ron Davis
Patrick McGowan
Nancy Klimas
Byron Hyde
Derya Unutmaz
Roland Staub
Eleanor Stein
Betsy Keller
Luis Nacul
Chris Armstrong
Vicky Whittemore
Click to expand...
How did you get this list?
 
Alvin said:
I'm a bit confused, Patients can attend on the 4h but can also do some things on the 3rd and 5th or are they unrelated?
Click to expand...

It is worth looking at this letter again, I think. The 4th is for all patients. The afternoon of the 3rd is open to patients but my impression is that the conversation will be focussed on the situation in Canada for research and patient care. Asking ME/FM Action Network would clear that up, or just waiting for a more detailed agenda. The last morning of Saturday is open to some patient representatives? I think that is what she wrote. Not the whole patient community.

I am interested in going to this but am not definite yet. If I do, I would be up for meeting any fellow patients here. That would be via PM later on.
 
Just brain-storming...but is there someone here who can formally represent the patient community on other days? Say, as a representative for S4ME? I'm with @ScottTriGuy that patients should be included. I believe Cort attended all of the OMF conference (but could be wrong). Some of the what the researchers discuss may not be ready in their minds for the patient community, but that does not mean that a representative cannot be present.
 
Here is the program for patient day, on may 4th.

It’s in french but just look at the names.

**********

9:45-12:40 ⇒ Première partie de la journée

Avec:

  • Alison C. Bested
  • Lucinda Bateman
  • Eleanor Stein
  • Margaret Parlor
  • Betsy Keller
*Sous forme de conférences avec période de questions



12:40-13:40 ⇒ Lunch fourni sur place



13:40-15:00 ⇒ Table ronde avec des experts (Pharmacien, nutritionniste et génétique)



15:15-16:15 ⇒ Table ronde entre les différentes associations représentants l’EM à travers le Canada



À partir de 16:15 il sera possible à tous ceux qui le désire de se joindre aux conférences réservées aux professionnels de la santé, mais pas avant.

16:15 ⇒ Chris Armstrong
16:35 ⇒ Nancy Klimas
16:55 ⇒ Vichy Holets Whitemore
17:15 ⇒ Linda Tannenbaum
 
A lot of it looks good. Some of it looks awful:
10:15-10:55
ME/CFS: Central Sensitivity Syndromes and the Complex Chronic Diseases Program at BC Women's Hospital

Ric Arseneau, MD, FRCPC, MA(Ed), MBA, FACP, CGP, Clinical Associate Professor Division of General Internal Medicine St. Paul's Hospital, Women's Hospital University of British Columbia, BC, Canada
Click to expand...


This one's been firmly in the "central" camp thus far, despite the ambiguous title:
11:35-12:15
Peripheral and Central Mechanisms of Chronic Fatigue Syndrome

Roland Staud MD, Professor of Medicine, University of Florida, FL, USA
Click to expand...


This one seems to be a quack of some sort, apparently a mix of BPS and other sorts of woo. She also seems to have gotten lost on her way to a fatigue conference, based on the title of her presentation:
15:30-16:10
Diagnostic Dilemmas : Etiology and Treatment of the Fatigued Patient

Riina I. Bray, BASc, MSc, MD, FCFP, MHSc, Medical Director, Environmental Health Clinic, Women’s College Hospital, Toronto, ON, Canada
Click to expand...


These people are from a standard heal-thyself BPS clinic:
10:45-11:05
Cultivating Change: Leveraging Epigenetics via Lifestyle Modification: An Integrative Multidisciplinary Treatment Model in ME/CFS

Alexis Goth, MD, and Tara Sampalli, PhD, Integrated Chronic Care Service in Primary Health Care at the Nova Scotia Health Authority, NS, Canada
Click to expand...


But mostly it looks good - a lot of it looks excellent. I just wish they'd screen out the quacks.
 
Valentijn said:
A lot of it looks good. Some of it looks awful:



This one's been firmly in the "central" camp thus far, despite the ambiguous title:



This one seems to be a quack of some sort, apparently a mix of BPS and other sorts of woo. She also seems to have gotten lost on her way to a fatigue conference, based on the title of her presentation:



These people are from a standard heal-thyself BPS clinic:



But mostly it looks good - a lot of it looks excellent. I just wish they'd screen out the quacks.
Click to expand...

Maybe they don’t know ? Someone should write to Dr Moreau. He is new to the field and I don’t think he sees all the subtilities yet. And l’AQEM isn’t in a good place to judge either.
 
"Experts Gather in Montreal to Develop International Research Agenda on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

MONTREAL, April 25, 2018 /CNW Telbec/ - International experts will participate in the first-ever Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference on May 3–5, 2018 at CHU Sainte-Justine. The conference will bring together 250 researchers and healthcare professionals from various disciplines to develop an international research agenda for this debilitating disease, for which there is no known cause or effective treatment."

full article here:
https://www.newswire.ca/news-releas...elitischronic-fatigue-syndrome-680811321.html
 
You must log in or register to reply here.
Back
Top Bottom