International Canadian ME/CFS Conference May 3-5, 2018

Gemini

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First International Canadian ME/CFS Conference May 3-5, 2018 will be Livestreamed Day 2 (May 4th).

@Cort posted the following speakers and topics on his blog:

  • A Short History of ME/CFS – Dr. Byron Hyde
  • The Future of ME/CFS Research in the Omics Era – Ron Davis
  • Modeling and Creating Clinical Trials in GWS and ME/CFS – Dr. Klimas
  • Pathophysiological Mechanisms in ME/CFS – Dr. Alison Bested
  • Objective Diagnoses – Dr. Lucinda Bateman
  • ME/CFS: Could Neuroplasticity Play a Role? – Dr. Eleanor Stein
  • The NIH and the Future of ME/CFS – Vicky Whittemore
  • The Need for Open Collaboration – Linda Tannenbaum
  • ME/CFS Research Landscape in Canada: How Can Science/Innovation Address Unmet Needs? – Margaret Parlor, President of the National ME/FM Action Network, Ottawa
  • Is Heart Rate a Valid Exertional Index in ME/CFS? – Betsy Keller
  • The Alberta Healthy Living Program: The Role of ME/CFS Education – Eleanor Stein, MD, FRCP(C), Calgary, Canada; Judy-Anne Wilson, representative of Edmonton ME Society; Alison Rae, Board Chair and CEO, Action CIND.
  • Medication and ME – Kevin Mejo, BPharm
  • Nutrition and ME – Valérie Marcil, Ph.D., DtP
  • Genetics and ME – Alexis Goth, M.D., CCFP(C)
  • The Biobank Experience in Australia – Chris Armstrong.
Plus, an Unrest screening will occur at the conference location on Thursday night @ 7pm with a follow-up panel discussion by Nancy Klimas, Vicky Whiittemore and Scott Simpson. I (Cort) will be moderating.

Hopefully he'll give us a recap of the Conference!
 

Dolphin

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Have been tweeting first as exceedhergrasp1 on Twitter, and now on MEAction's Twitter here: https://twitter.com/MEActNet
Anyone know which study this refers to?
 

JaimeS

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Anyone know which study this refers to?
Rowe said it was presented at a conference, as I recall.
 

Dolphin

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Rowe said it was presented at a conference, as I recall.
Thanks. I think it could be this presentation. Hopefully they will publish a paper.
UK CFS/ME Research Collaborative

Report of the fourth Annual Science Conference
13 and 14 September 2017, Bristol

Orthostatic intolerance in CFS/ME

Prof Dr Frans Visser and Dr Linda van Campen, Cardiac Care Foundation

Prof Visser and Dr van Campen, are cardiologists who have developed a research interest in CFS/ME, especially the role of orthostatic intolerance. They described some of their current research in this area, and the use of pyridostigmine – a drug that is primarily used in myasthenia gravis – as a treatment option.

Prof Visser began by acknowledging that “orthostatic intolerance is a relatively new kid on the block when it comes to CFS/ME criteria.”

Discussing the prevalence of orthostatic intolerance in people with CFS/ME, Prof Visser acknowledged that it is very variable between studies, ranging from 30% to 59% prevalence – though in all studies, it occurs more frequently in people with CFS/ME than in healthy volunteers.

In his and Dr van Campen’s clinic, based on data from more than 500 patients, there is clinical suspicion of OI in 80% of CFS/ME patients. But in tilt-table testing, they see hemodynamic abnormalities only in around half of patients (44%).
How can we explain this difference in symptomatic complaints versus objective science, asked Prof Visser? The answer lies in the cerebral hypoperfusion, he explained, which is decreased blood flow to key parts of the brain.
Describing the findings of tilt table tests, Prof Visser showed that there is an abnormal decrease in cerebral blood flow when sitting and during standing in CFS/ME patients and that, even in the absence of abnormal hemodynamic findings (eg. POTS) there is abnormal cerebral blood flow decrease.

He concluded by highlighting that, in light on these findings, the still widely-held assumption that CFS/ME is due to deconditioning is in fact emphatically wrong.

Dr van Campen expanded on this, giving overview of research she and Prof Visser had undertaken using CPET testing and actometers.

“In 114 consecutive CFS/ME patients undergoing CPX and Sensewear activity armband we correlated the total number of steps from the Sensewear activity meter with the range of a normal VO2max,” she explained, before concluding that their data suggests that cerebral blood flow decline is NOT caused by deconditioning as evidenced by the %VO2max and number of steps, but is part of the disease of CFS/ME.

You can watch a film of this presentation at www.tinyurl.com/actionformeyoutube
 

JaimeS

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Ron on now...

 

Gemini

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Details received this morning. Set to go...
Conference began with awards (in French) followed by a short video featuring Jen Brea @Jen B.

Liveatream audio volume very low [later corrected] so hope Jen's video will be available online.

Dr. Byron Hyde feels ME is a neurocirculatory disease and mentioned autoimmune vasculitis.

Ron Davis gave an outstanding summary of his infectious diseases, immune, and metabolomics research leading up to the "Metabolic Trap" hypothesis which he feels is "reversible."

So far an excellent conference, very well-organized....
 

alkt

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the enterovirus is what he suspects causes hypoperfusion that would not rule out vasculitis . poorly working veins would explain poor blood circulation in a lot of people wit m .e .
 

Gemini

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He's going to have to make up his mind. Where did his enterovirus theory go?
Theory still there @Kati as far as I can tell.

He briefly covered ME outbreaks, patients he visited incl. at Royal Free and other sites around the world, showed a slide of Dr. Chia's enterovirus/ stomach tissue, reviewed manifestations of EV infections, etc.

The presentation seemed to be a shortened version of a longer one he had to compress into the 20-minute time slot. Hopefully full versions of all presentations incl. his will be made available.

@alkt highlights Hyde's current thinking in the post above:

the enterovirus is what he suspects causes hypoperfusion that would not rule out vasculitis . poorly working veins would explain poor blood circulation in a lot of people wit m .e . .
 
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