Open Qualitative study in Norway recruiting participants

Tjenesten og MEg was one of the four research projects who got funded via the Research Council of Norway's project BehovME, where users of research were invited to give suggestions for what kind of research projects the council should prioritise.

Sintef and Fafo are cooperating on this research project where they will study the needs of ME patients and their families, as well as their usage of and experience with health care services.

They are now recruiting participants for a qualitative study. People in Norway who are interested to take part, can fill out this survey.

 

I completed the questionnaire this morning

I’m very excited about this study, we desperately need to map out the challenges faced by PwME in accessing health and social services, and everything I’ve seen so far makes me optimistic that the people behind this study are doing a very thorough job.

 

This is one of the studies I'm really looking forward to.

Sintef have done exellent work in this field before, with two earlier evaluations. It's not about treatments or finding the cause, but in the current clima in Norway it will still be an invaluable study to document by such a reliable and high thought of insitution how the lived experience of ME-patients is - and access to the health services.

They did a meeting at the planning stage of the project, that also was streamed, invititing ME-patients and their relatives to give them input. It was such a strong meeting, and very respectful, thoughtfull reserachers open to listening and take on board what was said.

 

The research project Tjenesten og MEg consists of two independent research organisation collaborating on investigating ME patients meeting with the health care service in Norway. One of them, SINTEF, has already written three very thorough reports on the lack of care for ME patients.

The research project has its own Facebook page. They've just posted that they're looking for family members/carers to severe ME patients in Norway to participate in focus groups.

Due to the pandemic these focus groups will be digital and will consist of one digital meeting which will last maximum 2 hours. They plan to organise the participants into four groups with 3-5 people; one group for parents of severely ill children (under 20 years of age), one for parents of severely ill adult children, one for adult children caring for severely ill parents or siblings, one for partners of severely ill patients.

Severely ill ME is defined as bed bound and in need of care. People who are interested in participating can send an email to the research project by 15th May.

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