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Final global conference “Common strategy on research of ME/CFS”

Preliminary Program

12 March 2020

8.45 – 9.15

Registration  

9.15 – 9.25

Opening Remarks and Welcome

Modra Murovska, COST Action Chair

Agrita Kiopa, Vice-rector for research

Maija Bundule, COST National coordinator, Latvia

SESSION 1 - ME/CFS epidemiology

Chair: Eliana Lacerda

 

9.25 – 9.50

Fernando Estévez-López

Epidemiology of ME/CFS in Europe: past, present and future

9.50 – 10.30

Katherine S Rowe

What do young people find helpful in their management? Findings from a long term follow up study of 784 young people

10.30 – 10.45

Joanna Słomko, Pawel Zalewski

Prevalence and characteristics of CFS/ME in Poland

10.45 - 11.00

Kathleen Mudie

Considerations of ME/CFS biobanks and bio-repositories within EUROMENE

11.00 – 11.15

Henrik Nielsen

HYPOTESIS: We underestimate the risk of chemicals in water and food in ME/CFS

11.15 – 11.35

Coffee Break 

SESSION 2 - ME/CFS socio-economics

Chair: Derek Pheby

 

11.35 – 12.05

Derek Pheby Problems in determining the economic impact of ME/CFS in Europe

12.05 – 12.30

Panel discussion – Recommendations of the Working Group on the development of a Europe-wide consensus approach to the economic evaluation of ME/CFS: questions and answers

12.30 – 12.45

Diāna Arāja

Investigating the availability of data on ME/CFS patients in Latvia

12.45 – 13.00

John Cullinan

Incorporating the patient perspective when estimating the economic impact of ME/CFS

13.00 – 14.00

Lunch 

SESSION 3 - ME/CFS biomarkers

Chair: Modra Murovska

 

14.00 - 14:30

Carmen Scheibenbogen

Biomarker in ME/CFS

14:30 - 15:00

 

Karl Johan Tronsted

Changed energy metabolism in patients with ME/CFS

15.00 – 15.15

Franziska Sotzny

Marker for autoimmunity in ME/CFS

15:15 - 15:30

Evelina Shikova-Lekova

Chronic viral infections and ME/CFS 

15.30 – 15.45

Bhupesh Prusty

HHV-6 reactivation mimics mitochondrial fragmentation phenotype as seen in the serum of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients

18.00 -

Dinner

 

13 March 2020

SESSION 4 - ME/CFS clinical research

Chair: Jerome Authier

 

09.30 – 10.00

Jerome Authier

Overview on works done during COST action and presentation of recommendations

10.00 – 10.15

Eliana Mattos Lacerda

Diagnostic criteria for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) – Recommendations from the EUROMENE’s Clinical Working Group

10.15 – 10.30

Ruud C.W. Vermeulen

Cardiopulmonary Exercise Test in ME/CFS: Why, How and When?

10.30 – 10.45

Shennae O’Boyle

How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS

10.45 - 11.15

Coffee break

11.15 – 11.30

Jean-Dominique de Korwin

Patients from the French Chronic Fatigue Syndrome association fulfilled Systemic Exertion Intolerance Disease (SEID) criteria, but disagreed this new denomination

11.30 – 11.45

Aoun Sebaiti Mehdi

Phenotyping cognitive impairment in adult patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 

11.45 – 12.00

Caroline Kingdon

Including the housebound patient severely affected by ME/CFS in research: a compassionate approach

12.00 – 12.15

Sławomir Kujawski

The impact of whole-body cryotherapy upon cognitive function in myalgic encephalomyelitis/chronic fatigue syndrome patients. Preliminary studies.

12.15 – 12.30

Šimons Svirskis

Cost innovation grant (CIG) application “App and web platform for ME/CFS

patients self-empowerment and disease management”

12.30 – 13.00

Closing remarks and farewell

13:00 – 14.00

Lunch

 

 

14.00 – 18.00

Management Committee meeting