Morning
9:00 Spokesperson for the Icelandic ME Society welcomes guests
9:10 Representative from health authorities
9:20 Prof. Margrét Guðnadóttir: Akureyri disease
9:50 Helga Haraldsdóttir. A patient tells about her experience of the Akureyri disease
10:05 Questions to speakers mentioned above
10:15 Break
10:35 Short video from the Icelandic ME society
10:45 Dr. Daniel Peterson: CFS/ME: From History, Diagnosis, Epidemics to The Scientific State of the Art 2017
11:25 Prof. Simon Carding: Establishing a European ME/CFS Research Centre of Excellence in Norwich: Is there a Gut-Brain Link in ME/CFS?
11:55 Questions to Dr. Peterson and the Invest in ME representative.
12:10 Lunch
Afternoon
13:10 Øystein Fluge, MD, PhD, consultant in oncology and researcher, Dept. of Oncology, Haukeland University Hospital and Ingrid Gurvin Rekeland, MD, physician in oncology training and research fellow, Dept. of Oncology, Haukeland University Hospital:
Therapeutic intervention and disease mechanisms
in ME/CFS
14:30 Dr. Nigel Speight, Paediatrician, Durham UK:
The challenge of the severe case of Paediatric ME
15:00 Ewa W. Wedlund, reg. occupational therapist
and med. lic.: Activity and Participation in persons with ME/CFS: Non-medical approaches.
15:30 Questions from audience for Dr. Fluge, Dr. Rekeland, Dr. Speight og Ewu W. Wedlund
15:45 Break
16:05 Panel discussion with all the speakers. Audience can hand in written questions in forehand
17:00 End of agenda
ME CONFERENCE IN REYKJAVIK
SEPTEMBER 28, 2017
AGENDA
ABOUT THE CONFERENCE
The Icelandic ME society is proud to introduce it´s first conference about ME in Iceland.
ME is known by many as Chronic Fatigue Syndrome (CFS or síþreyta in Icelandic) and fatigue is certainly a prominent symptom of the disease. But other symptoms are present and can be very serious. Therefore patients and many others prefer to use the name myalgic encephalomyelitis or ME.
Not all diagnosed with CFS in Iceland have ME. What characterises ME is Post-exertional malaise (PEM); a worsening of many ME symptoms as a result of physical or mental exertion. At the World Health Organization myalgic encephalomyelitis has the classification number G93.3.
The Akureyri outbreak was an outbreak of Myalgic Encephalomyelitis in Northern Iceland during the winter of 1948-1949. The names Akureyri disease and Icelandic disease were even known as early names for ME. At the conference we will hear from a virologist who studied this outbreak.
Our aim with the conference is to bring attention to new knowledge and studies, not least for the health sector in Iceland but also patients and others. It will hopefully be the first step on the way to improve the service they get within the health system and elsewhere and we hope for different.
Our vision is a cross-diciplinary team in Iceland that will diagnose, care for and help ME patients to better health and function in life.
SPEAKERS
Dr. Daniel Peterson
Daniel L. Peterson, MD, is a physician in Incline Village, Nevada specializing in myalgic encephalomyelitis (ME). He was at the epicenter of the 1984 Incline Village chronic fatigue syndrome outbreak and continues to be a leader in treatment and research about ME/CFS, serving on Simmaron Research’s Scientific Advisory Board and the Faculty of Health Sciences and Medicine at Griffith University in Queensland, Australia.
He helped establish the Whittemore Peterson Institute (WPI) which was renamed in 2016 to the Nevada Center for Biomedical Research. He left in 2010 to return to private practice at Sierra Internal Medicine, Incline Village, Nevada.
In 2003, he co-authored the Canadian Consensus Criteria for Myalgic Encephalomyelitis.
Dr. Peterson was the first physician to use Ampligen in the treatment for ME/CFS and has participated in every Ampligen trial since.
Dr. Øystein Fluge
Dr. Øystein Fluge, MD, PhD, consultant in oncology and researcher, Dept. of Oncology, Haukeland University Hospital. Along with dr. Olaf Mella he has researched Rituximab and Cyclophosphamide as possible treatment for ME. The final results of the Rituximab study are expected very soon and are awaited with great anticipation.
Dr. Ingrid Rekeland
Ingrid Gurvin Rekeland, MD, physician in oncology training and research fellow, Dept. of Oncology, Haukeland University Hospital. She and dr. Fluge will talk about their studies of the drugs Rituximab og Cyclophosphamide and what those studies have revealed about disease mechanisms in ME/CFS.
Dr. Nigel Speight, Paediatrician, Durham UK
Dr. Nigel Speight is one of the wold´s leading specialist in pediatric ME/CFS and one of the authors of the 2017 Pediatric Primer that provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. Dr. Speight is also one of the authors of the 2011 case definition, International Consensus Criteria (also here)
Dr. Margret Gudnadottir
Margret Gudnadottir virologist studied the Akureyri disease and will give general talk about that work.
Helga Haraldsdóttir (patient)
Helga got the Akureyri disease and will share her experience with the audience.
Ewa W. Wedlund, reg. occupational therapist and med. lic.
Ewa W. Wedlund is an occupational therapist who has worked with ME patients. She will talk shortly about her clinic, then what they meet in their centre and how she as an occupational therapist can support and help ME/CFS-patients.
Prof. Simon Carding
Head, Gut Health and Food Safety Research Programme
Quadram Institute Bioscience,
Professor Mucosal Immunology
Norwich Medical School
University of East Anglia
Prof. Simon Carding will tell us about the new European ME/CFS Research Centre of Excellence in Norwich and the research into the gut´s micobiota and it´s role in ME.
From Quadram´s website:
Our research builds on recent evidence that ME/CFS has a basis in the immune system. Our focus is on the interactions between the immune system and the microbiota in the gut. Many ME sufferers also have gut-related conditions and several studies have recorded altered microbiota communities.
Here you can read about Prof. Simon Carding
Here you can read about the Quadram Institute
Here you can read about Quadram´s researches of ME and the gut
REFRESHMENTS
The Icelandic ME Society offers beverages during the day. At the afternoon break there will also be fruits and gluten free cupcakes for guests.
The lunch break is hour long and guests can buy a meal at the hotel restaurant. Grand hotel has a special offer for the conference guests: Pumpkin- and carrot soup with freshly-baked bread, see here.
SPECIAL NEEDS AND ASSISTANCE
Some of the guests might have limited stamina and therefore we will provide a room where people can retreat and rest for a while. The setup in the conference room will also be as comfortable as possible. The chairs are rather comfortable (as far as those kind of chairs go) and we will try to provide foot stools, pillows, blankets etc.
Should you have requests or special needs, please contact us by e-mail and we will try our utmost to accommodate you.
All suggestions about how to make this day as pleasant and easy as possible are welcome.
The event is held in Gullteigur at Grand Hotel, Reykjavik. The entrance is on the north side of the building, from Sigtun.
At the entrance someone from the Icelandic ME Society will greet the guests. They will be asked to show their ticket and will get a name tag.
Grand hotel, Sigtun 38, 105 Reykjavik
Should you have any questions please don´t hesitate to send us an e-mail by using this form.