ESME LAUNCH MEETING

STAVANGER, JUNE 13^th, 2009

ESME was launched with a reception for the Think Tank doctors. It took place on the 14th floor of the Clarion Hotel, giving a beautiful view of the Stavanger harbor.

Professor Babill Stray-Pedersen, the patron of the meeting, opened with a welcome speech. This was followed by an introductory speech by Bieke, the founder of ESME, who explained how ESME came into being and the importance of this project for ME/CFS.

Svein Harvang, an ESME board member, introduced the board to the scientific panel members and offered a toast and a word of thanks to them and to the other volunteers for the good work and time they have given to the project.

After the reception, the panel gathered for an exquisite dinner in downtown Stavanger. It was a great opportunity for everyone to introduce themselves and get better acquainted. Each panel member told of their unique expertise in their specific fields and how this knowledge would benefit ESME and contribute to the group’s understanding of ME.  

Professor Umberto Tirelli told the panel members that he found many cancer patients recovered from their cancer disease only to find themselves disabled by a fatigue very similar to that of ME/CFS patients. Often this was not mentioned to their oncologists.

Professor Maria Molnar explained how she works with myopathological investigations, genomics and mitochondrial dysfunction and is currently working on a biobank system for these patients.

Professor Hanns Ludwig and Dr. Liv Bode told the group their fascinating story about how borna virus infections can result in disease in humans, especially psychiatric diseases such as depression, OCD and bipolar disorders. Some of these patients also have symptoms similar to ME/CFS patients.

Dr. Derek Enlander told the group about his clinic in New York specializing in ME/CFS and promised to tell more in his presentation the next day.

Professor Kenny De Meirleir told the group he has 20 years of experience in the field and has seen more than 3-4000 ME/CFS patients per year in recent years.

Dr. Ana Garcia Quintana talked briefly about her clinic and her experiences in ME/CFS and said she was somewhat shocked to hear there are so many extremely disabled patients in northern Europe as it is not that common in southern Europe.

Professor Bodil Norrild mentioned her work as head of the DNA tumorvirus group in Copenhagen.

Professor Babill Stray-Pedersen has worked for many years as a gynecologist with special interest in gynecological infections.

Dr. Mette Johnsgaard, the group’s medical reporter, mentioned her clinic, Lillestrom Helseklinikk, just north of Oslo, where she treats ME/CFS patients. She also expressed her humble appreciation of being able to sit in as a medical reporter for this esteemed group.

During the meal, the doctors were entertained by two ME/CFS patients who sang two songs about hope and dreams. One of the patients expressed her gratitude to Prof. De Meirleir for taking her seriously, treating her illness and giving her back her life.  It was a very touching moment for the panel members and brought home for them the importance this project has for the lives of the many patients devastated by ME/CFS.

Early the next morning, Prof. Saugstad opened the meeting by translating two articles about the Think Tank meeting from that morning’s Norwegian newspapers. One paper, Dagbladet, had a two-page report with pictures. This paper is widely read throughout Norway. Both articles were positive about the project and gave some details about the situation for ME/CFS patients.

The panel agreed on the importance of updating ESME’s mission statement to reflect the Think Tank’s scientific opinion of this mystery disease.

Bieke showed a film about a young Norwegian patient, Anne, who became ill on her honeymoon trip to Mexico. She has been bedridden and tube-fed since June 2007. She experiences continuous extreme pain, and cannot even bear the weight of blankets on her skin. A special frame has been built to hold the blankets off her legs. She is currently being treated by Prof. De Meirleir and is experiencing small improvements.

Several panel members were moved by the film, having been previously unaware of the severity of the illness. One member gently suggested the possibility of a psychological element in her disease. Prof. De Meirleir explained that he has found several systemic infections in that patient and that the treatment of these results in improvement.

Bieke then gave a presentation entitled “Facts and Figures” that left no doubt that ME/CFS is a serious public health problem. There are an estimated 2 million patients in the EU alone. It is commonly believed that this number is just the tip of the iceberg as there are no accurate prevalence studies due to the inconsistent and inaccurate diagnostic criteria. Without treatment the disease results in life-long disability and less than 3 percent recover spontaneously. Twenty-five percent are entirely house-, bed- or wheelchair bound. The estimated socioeconomic costs for the EU are 20 billion euro annually.

ME/CFS can be fatal: there are 4 times as many cancers in these patients and many also die prematurely due to cardiovascular disease, secondary infections, cancer and suicide.

The fact is that ME/CFS is a serious chronic multi-system, multi-symptom, multi-organ disease.

Pediatric ME/CFS is surprisingly common and a major concern. Fifty percent of long-term school absences are a result of ME/CFS, and there is an overlap with ADHD/ADD.

A second film showed Prof. De Meirleir treating another bedridden patient. He spoke about the stigma of ME/CFS and how receiving the diagnosis of ME/CFS often stops the medical profession from searching for the cause, and thereby denying patients access to treatment. In this case, Prof. De Meirleir found Lyme disease to be the cause of her illness, which meant she was originally misdiagnosed with ME/CFS.

Bieke gave a short presentation about ESME and explained that it was founded by patients and built up by thousands of hours of volunteer work by patients. Although it was founded by patients it was created for doctors. The focus in on stimulating scientific research and cooperation between relevant scientific fields to hopefully unravel the complexities of ME/CFS as well as informing and training doctors and healthcare personnel in Europe.

Prof. De Meirleir continued the meeting by summing up the most relevant biological research from the past to present date. This included some of his new theories on the pathophysiological mechanisms behind the disease, focusing on the gut, heavy metals and neurotoxins.

The panel then had a discussion on the reasons for the higher prevalence of ME/CFS in Norway, suggesting higher amounts of heavy metals in patients due to both the higher consumption of fish and the drift of air pollution from major industries in Russia.

Dr. Enlander opened his presentation by telling the panel members how he only by chance came into the ME/CFS enigma, when in the 90’s he met an old friend who told him that he suffered from this mysterious disease. Dr. Enlander decided to look into it and ended up looking for treatment protocols that work.

Finally Dr. Ana Garcia Quintana showed the panel slides of the current research she has been performing on fatigued patients. Studies looking into neurocognitive disturbances in ME/CFS, aerobic reserve test studies and hormonal evaluation in effort in ME/CFS patients were briefly explained, as well as the treatment protocols she uses.

After lunch, the panel members discussed the clinical criteria and the diagnosis. Everyone agreed on the need for more accurate diagnostic criteria and sub-grouping in order to define the most relevant scientific research areas and effective treatment protocols.

Interest in the disorder varies widely in Europe.  The group discussed how to broaden the scientific panel to include all major European countries in order to sharpen the focus on the disease in all of Europe, not only the major countries. One way to keep interest heightened is to organize conferences combining local ME/CFS organizations, physicians interested in the disorder and scientific guest speakers with information and knowledge relevant to ME/CFS.

The panel members closed the meeting by discussing practicalities for the next meeting, which will probably take place mid of 2010. Each meeting will have a central topic and suggested topics for the next meeting are oxidative stress, pediatric ME/CFS, infections and criteria for the ME/CFS diagnosis.

Mette Johnsgaard, MD – Medical Reporter

The Scandinavian Institute for ME/CFS

Lillestrom Helseklinikk

Lillestrom, Norway

Rebecca Hansen - ESME Consultant

Denmark

© ESME 2009