UiB receives 11 million in support for ME research
The Research Council has allocated NOK 60 million to various research projects in women’s health. UiB(the University of Bergen) has been awarded NOK 11 million (about € 942.186) for a project at the Department of Biomedicine which will investigate whether patients with ME may have an error in energy metabolism.
The project is entitled “Impaired microcirculation and tissue hypoxia as a possible mechanism in ME/CFS”.
“This grant means a lot to our research on ME/CFS. The aim of this project is to gain new knowledge about the mechanisms behind the disease, and look for biomarkers that can hopefully be used for diagnosis and targeted treatment”, says project manager Karl Johan Tronstad at Tronstad lab .
He leads the research in close collaboration with Øystein Fluge and Olav Mella from UiB and Haukeland University Hospital.
A short summary of the project can be read here.
A survey of all the grants from the Research Council can be found here
About Røysumtunet
Røysumtunet is a non-profit diaconal organization owned by the Røysum Deaconess Foundation, offering services of high professional quality for people with
– Epilepsy – Mental disorders – ME – Acquired brain injuries – Developmental disabilities
Vision
Røysumtunet’s vision expresses the expectation and commitment to provide professionally competent health service. This takes place in an equal interaction with its residents.
The vision expresses that we will constantly develop our interdisciplinary practice in line with new knowledge.
Values: equality, safety, independence, well-being
Who can be offered a place?
ME sufferers with severe or very severe ME.
Feedback:
– Røysumtunet is committed to delivering good adapted services, and works continuously with quality development of the offer. – User participation is emphasized. – We welcome feedback.
Content and principles
– Individually adapted care and nursing: full care in bed possible – Adapted sound and light shielding. – Healthy and nutritious diet. – Adapted nutrition according to advice from nutritionist. – Tube feeding or IV nutrition if necessary. – Necessary medical treatment and symptom relief by the doctor responsible for the treatment. – Opportunities for activities that are adapted to the individual’s needs and wishes, approved by physician responsible for treatment, and by the ME patient. – Offer of coping and support conversations. – Collaboration and contact with relatives according tot he agreement and wishes of the individual. – Safeguarding the municipality’s responsibility for proper health care, including rehabilitation at first-line level. – The principle of voluntary participation is fundamental for all content of the service, and there is no form of coercion.
Competence and personel
– Supervising doctor with broad expertise and long experience with ME patients. – Nurses with experience and various further education. – Health professionals with experience and further education. – Research is initiated and led in collaboration with the Norwegian ME Association. – Physiotherapist, occupational therapist, social worker and nutritionist on an hourly basis. – Need-adapted staffing on a 24-hour basis. – Staff guidance by the supervising doctor, doctor responsible for research and research nurse. – Teaching, courses and seminars for staff in collaboration with the Norwegian ME association.
How to apply
1. Primary doctor or specialist sends justified application and medical certificate to the municipality or district allocation office for a stay at Røysumtunet.
2. The municipality’s allocation office books place at Røysumtunet if the application application is granted and a decision is made.
Duration of stay
The length of stay will vary, and is regulated for each individual through the municipality’s decision and agreement with Røysumtunet. For long-term stays without an agreed length, the municipality will assess the duration based on the individual’s needs and wishes, as well as advice from Røysumtunet’s supervising doctor.
Financing
Røysumtunet’s services are defined as part of the first-line service, and stays are financed by the municipality/borough. The municipalities may decide on a personal contribution.
Source: agreement Røysumtunet with ME Foreningen Norge
Thanks to Rune Hoddevik
Open professional day – How to train healthcare personnel in ME?
November 21st marked 36 years since the foundation of Norway’s ME association. True to tradition, it is marked with the Open Faculty Day at OsloMet. New this year was that it was also possible to participate digitally.
Most doctors, nurses, physiotherapists and occupational therapists have never learned about ME during their studies. There is a huge knowledge gap to fill. We got hold of some of the few who teach ME, to hear how they think you can raise the level of knowledge.
Nina Muirhead was one of the presenters at the Open professional day. She comes from the UK, and Doctors with ME, of which she is one of the founders.
Nina Steinkopf and Sissel Sunde awarded
Sissel Sunde has been involved in the ME cause since 2017. Under the banner #MillionsMissing Stavanger, she has organized several events, both in Stavanger and most recently at the Norwegian Parliament. She uses her blog, “life with ME by Sissel“, to highlight voices that do not get a place in the media about ME, and her own debate posts in current ME debates, in addition to seeking out issues that no one has yet addressed. She has established contact with the media, politicians and others, and in this way has made a major contribution to putting ME on the public agenda in recent years.
Nina Steinkopf is an active social debater with weight, who is used frequently when journalists want a statement or someone who can participate in the debate on ME. Whether it’s with posts on psykologisk.no, or to defend the patient group on Dagsnytt 18 against undocumented claims. The blog MElivet is both a newsletter with news about ME from around the world, and a channel for Steinkopf’s debate posts, which makes everyone who reads it a little wiser.
Both Sissel and Nina received their reward at the Open Professional Day on Novermber 21st.
Source: Newsletter 14 of the ME Foreningen
The ME Global Chronicle 