Report from Stockholm on RME ME/CFS Meetings
Two successful ME/CFS meetings in Stockholm, Sweden
The Swedish National Society for ME Patients, RME, arranged in October 2013, two successful meetings.
Round table meeting for researchers/physicians at Danderyd’s Hospital, 15th October, 09:30-16:00
Morning meeting – topics of discussion:
- Auto-immunity, triggering infections in ME/CFS, NK cells, HHV6, biobanks.
- Methods of diagnosis: The current situation. How can they be improved? Are the physical tests effective? How many patients can be put through them? How good are the immunological tests? Other markers?
- Treatment: CBT, Rituximab – the situation in Sweden, other treatments.
The discussion was greatly appreciated by the 18 participants and resulted in an increased interest in attending our meetings twice a year, which RME arranges for “our” network of researchers/physicians at Gotahälsan Clinic in Mjölby.
There was also a consensus for RME to arrange another round table meeting in 2014. The possibility to meet in real life for discussions about different research fields and clinical experiences, and establish deeper contacts for future cooperation, both national and international, is invaluable.
Afternoon meeting at the ME/CFS Clinic:
The team at the ME/CFS Clinic presented their evaluation report on the ME/CFS project which was started in the spring of 2011. They also presented their work at the clinic. Afterwards the group discussed:
- National co-operation.
- Clinics in Sweden work in different ways – how can one approach them?
- Can a joint research project be planned?
- Should a common measuring instrument be adopted?
Seminar in the Swedish Parliament 16th October, 13:00-15:30
RME had together with six different political parties, represented by members of the Parliamentary Standing Committee on Social Questions and the Committee on Social Insurance, invited representatives from the National Board of Health and Welfare, the Swedish Social Insurance Agency, politicians from the 20 Swedish County Councils, researchers, physicians and some members of RME, altogether about 55 persons. A goodiebag with our book Trötthet är fel ord (Fatigue is the Wrong Word), the documentary film Voices from the Shadows, A Primer for Clinical Practitioners and information for health care professionals compiled by RME was handed over to key persons.
The seminar was very successful with excellent and very informative presentations by Dr. Daniel Peterson, Simmaron Research, USA, who talked about history and current research, Dr. Olof Zachrisson, Gottfries Clinic, Sweden, who talked about diagnosis and treatment and Pernilla Zethraeus, member of RME and former member of the Swedish Parliament, who gave her view from a patient’s perspective.
Our member Dr. Lars Lagerstrand did an excellent job as moderator for the panel of politicians from the above mentioned committees.
Topics of discussion
- How can knowledge about ME/CFS be increased in medical professionals/physicians and the health care system?
- In Norway the Norwegian Directorate of Health has decided that all health care regions should have ME/CFS clinics. Sweden is very far behind on this issue. Danderyd´s Hospital is the only clinic of excellence that is driven by a county council and it is not permanent. 17 of 20 counties have no specialists for ME/CFS patients. How can we get more clinics of excellence for ME/CFS patients?
- Patients often have problems with the Swedish Social Insurance Agency regarding sickness benefits. How can knowledge about ME/CFS be improved among the staff of this authority, so that people with an ME/CFS diagnosis have an undisputable right to sickness benefits?
The panel showed great interest and seemed sincerely willing to try to change the health care situation for patients suffering from ME/CFS. We basically have an agreement with them to continue the discussion on improving patient care and research about ME/CFS. It was also clear that the Parliament can set aside money earmarked for certain care.
Due to our illness and the heavy workload in other Society matters, this meeting would never have been the success it was without the help of Ulrica Stenbeck, a freelance journalist, whom RME engaged as project leader for the seminar. I hope we will get the opportunity to work with Ulrica again in other projects in the future!
The fundraiser, which was arranged in California by Catharina, sister of Ulrica, raised enough money to cover the greater part of our expenses for the two days. The total cost for the events was about SEK 80 000 including the fee for the project leader, hotel and travel costs, subsistences, and filming the seminar.
The main Swedish television news program broadcasted a report the same evening, interviewing our member Pernilla Zethraeus at home, showing her serious situation, and Dr. Olof Zachrisson about the situation for patients in Sweden. Ewa Milerad, chief physician at the ME/CFS Clinic at Danderyd’s Hospital was also interviewed about their work. The headline of the report was 40 000 patients in Sweden but few get health care.
We are very pleased with the two above events, and with the report on the television news, and hope that they will lead to a change for ME/CFS-sufferers in Sweden.
Our work continues!
The Swedish National Society for ME Patients (RME)
Dr Daniel Peterson’s Presentation:
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