Norwegian Research Council with 30 mill NOK (3,7 mill USD - 2.9 mill GPB) to ME-research

[Kalliope]

Tomorrow there will be a conference in Norway - Contested Chronic Conditions - Patient Perspectives

One of the posts in the programme is:
The Research Council of Norway's experiences with a new model for developing research projects through the involvement of the public and user-panels by senior advisor Wenche Dageid

I assume she will talk about the user-identified allotment to ME-research which this thread is about. Hope the Research Council will make the speech available afterwards. Would love to read it!

Perhaps this user involvement could be of inspiration to the Australian medical research council's allotment to ME-research?

Some of the other posts in the programme of tomorrow's conference are:
"Life according to ME": a bio-photographic project - professor Olaug S. Lian
"There are places I remember" - Study participant Anette Gilje

The conference is organised by The Arctic University of Norway

EDIT: Introduction to conference
- Consultations between health care workers and people with contested chronic conditions, often referred to as medically unexplained physical symptom (MUPS), are among the most challenging clinical encounters in contemporary Western societies. These encounters are often imbued in conflict between health care workers who report feeling inadequate and resentful in these consultations, and patients who describe experiences of being blamed, disbelieved and left without any adequate help or support.

 

[Kalliope]

And the ME-research projects who will receive funding from the Norwegian Research Council are:

Genetic studies in CFS/ME to investigate the potential involvement of the immune system and reveal biomarkers

Defective energy metabolism in ME/CFS

Individuals and families affected by CFS/ME: Population characteristics, service use and needs

Fecal microbiota transplant in chronic fatigue syndrome - an RCT



Congrats to the researchers whose projects have been funded and warm thanks to the Norwegian Research Council who lend ears to the patients in the prosess of finding projects to support!

From the Council's website:
Her er ME-pasientenes forskningsprosjekter
Google translation Here are the ME-patients' research projects

- The Research Council's experience has been very useful and we will particularly express the enthusiasm and dedication of the patients and their relatives who exceeded our expectations. They have helped to fund projects of high professional quality and potentially very useful value, "says Research Director John-Arne Røttingen.

"It has been very rewarding to work so closely with users in a thematic area where the need for knowledge and commitment is so great. Thank you to all who contributed.

If you want to give the Research Council a thumbs up and/or thank them for involving ME-patients in this project you can do so on their post about this on Facebook or find them on twitter

https://twitter.com/i/web/status/877817401957642240

 

[AndyPR]

From the titles they sound like solid biomedical based studies, would that be a reasonable assumption?

 

[Kalliope]

From the titles they sound like solid biomedical based studies, would that be a reasonable assumption?

Yes! And all must be based on Canada-criteria. (And Wyller's application for a trial on Lightning Process got turned down). The Research Council has really listened to the patients this time, and even participated on Invest in ME-conference in order to get an overview of the field.

The prime minister Erna Solberg (blue dress) is there too for the announcement!

https://twitter.com/i/web/status/877818072224202752

 

[AndyPR]

Yes! And all must be based on Canada-criteria. (And Wyller's application for a trial on Lightning Process got turned down). The Research Council has really listened to the patients this time, and even participated on Invest in ME-conference in order to get an overview of the field.

The prime minister Erna Solberg (blue dress) is there too for the announcement!

https://twitter.com/i/web/status/877818072224202752

Excellent news all round then. I've left a message of thanks on the Facebook post you linked.

Would "Defective energy metabolism in ME / CFS, University in Bergen" be Fluge & Mella's team or am I mixing my researchers up?

 

[Kalliope]

Excellent news all round then. I've left a message of thanks on the Facebook post you linked.

Would "Defective energy metabolism in ME / CFS, University in Bergen" be Fluge & Mella's team or am I mixing my researchers up?

You are not mixing your researchers up

EDIT:
And thank you for leaving a message to them on Facebook. I think they really appreciate that this project is noticed also from abroad. I think it took a bit of guts from them to choose ME-patients in this pilot project on user involvement. I am SO happy they seem overall pleased and satisfied with both the process and the outcome.

 

[AndyPR]

You are not mixing your researchers up

EDIT:
And thank you for leaving a message to them on Facebook. I think they really appreciate that this project is noticed also from abroad. I think it took a bit of guts from them to choose ME-patients in this pilot project on user involvement. I am SO happy they seem overall pleased and satisfied with both the process and the outcome.

No problem at all. It's also in my interest as this is the sort of thing that the CMRC should be doing but is quite obviously not, so I'm delighted to see Norway embarrassing the UK in this way.

 

[Kalliope]

No problem at all. It's also in my interest as this is the sort of thing that the CMRC should be doing but is quite obviously not, so I'm delighted to see Norway embarrassing the UK in this way.

It's actually inspired by UK..

(the user involvement that is, not inviting ME-patients specifically)

Google translation:
In this announcement, the Research Council sets out a procedure for needs-identified research, inspired by tools in the English Health Research Council (National Institute for Health Research). The users of the research are influenced by what is to be researched through open invitations to suggest research questions and through participation in widely-composed user panels that identify knowledge needs and contribute in prioritizing project support. Users mean both patients, therapists and the general public.

Experience from England shows that needs-identified research contributes to increased knowledge of importance to the public's health and provides better decision-making for the service and the authorities. The involvement of users and the public in publicly funded research is also an initiative to "democratize" the research.

Source (google translation)

 

[AndyPR]

It's actually inspired by UK..

(the user involvement that is, not inviting ME-patients specifically)

Google translation:
In this announcement, the Research Council sets out a procedure for needs-identified research, inspired by tools in the English Health Research Council (National Institute for Health Research). The users of the research are influenced by what is to be researched through open invitations to suggest research questions and through participation in widely-composed user panels that identify knowledge needs and contribute in prioritizing project support. Users mean both patients, therapists and the general public.

Experience from England shows that needs-identified research contributes to increased knowledge of importance to the public's health and provides better decision-making for the service and the authorities. The involvement of users and the public in publicly funded research is also an initiative to "democratize" the research.

Source (google translation)

Lol, so doubly ironic then. Norway embarrasses the UK by using ideas that the UK refuses to use itself.

 

[Kalliope]

Lol, so doubly ironic then. Norway embarrasses the UK by using ideas that the UK refuses to use itself.

Yes. When I first read it I actually thought The Norwegian Research Council must had gotten National Institute of Health Research confused with NIH in USA (I was even about to correct them ).

 

[Jo Best]

@Kalliope @AndyPR I suspect the difference is that the Norwegian Research Council took it on board in the correct manner whereas in UK (certainly with the CMRC) the patient involvement is selective to suit the researchers.

 

[Kalliope]

@Kalliope @AndyPR I suspect the difference is that the Norwegian Research Council took it on board in the correct manner whereas in UK (certainly with the CMRC) the patient involvement is selective to suit the researchers.

It has not been only plain sailing for the Research Council. They've been strongly criticised for including ME-patients; from academia, a politician (who might become our next minister of health) and in media by an LP-coach.

They even had to go publicly and explain themselves..
Kritikken av Forskningsrådets prosess må bero på en misforståelse
Google translation: The criticism of the Research Council's process must be based on a misunderstanding

 

[Solstice]

It has not been only plain sailing for the Research Council. They've been strongly criticised for including ME-patients; from academia, a politician (who might become our next minister of health) and in media by an LP-coach.

They even had to go publicly and explain themselves..
Kritikken av Forskningsrådets prosess må bero på en misforståelse
Google translation: The criticism of the Research Council's process must be based on a misunderstanding

That reaction from landmark made me throw up in my mouth a little. Trying to turn it that we're the ideologists :') .

 

[Jo Best]

It has not been only plain sailing for the Research Council. They've been strongly criticised for including ME-patients; from academia, a politician (who might become our next minister of health) and in media by an LP-coach.

They even had to go publicly and explain themselves..
Kritikken av Forskningsrådets prosess må bero på en misforståelse
Google translation: The criticism of the Research Council's process must be based on a misunderstanding

Kudos to the Norwegian Research Council for remaining steadfast and professional.

 

[Kalliope]

The allocation made national news.

TV2: "Det tok fire år før jeg fikk diagnosen"

Google translation with statement from prime minister Erna Solberg:

Now the government is giving NOK 30 million for research into the disease. Patients and relatives have for the first time been involved in the process of selecting which areas within the disease to research.

"The choice of users means that you get more types of research, but it also means that you may come closer to what patients think can give results," says Solberg to TV 2.

After 736 proposals, more selections and processes, the Ministry of Health has now arrived at four projects, which will share the million sum. Two of them are about the causes of ME, one about treatment and one about how the healthcare system meets the patients.

 

[NelliePledge]

hi @Kalliope sorry to go off thread just saw the mention of Wyller and a project on the lightning process getting turned down - I was just reading a piece by Cort Johnson on HR talking about a BPS guy getting into herpesvirus research which apparently is the same guy is that right? seems weird that he's gone from lightning process to viruses

 

[Kalliope]

hi @Kalliope sorry to go off thread just saw the mention of Wyller and a project on the lightning process getting turned down - I was just reading a piece by Cort Johnson on HR talking about a BPS guy getting into herpesvirus research which apparently is the same guy is that right? seems weird that he's gone from lightning process to viruses

Yes it is the same guy - and yes it is weird.. He also has a trial on music therapy as treatment for ME Sometimes I wonder if he is more engaged in mind/body interaction in general than ME in particular..
It was discussed a bit in this thread
General ME-related news from Scandinavia

 

[NelliePledge]

thanks @Kalliope I will make any further comments over there

 

[Avena]

The FMT-study was surprising. Very interesting field. Does anyone know which method they are planning to use? I've been reading a lot about FMT lately, seems like every Hospital/Clinic has their own method. Quite confusing.

 

[MaximilianKohler]

This Norwegian study seems like it will have the same flaws as with the previous FMT one they did for IBS: https://www.reddit.com/r/HumanMicro..._norwegian_research_council_is_funding_a_rct/

I talked about it there ^ and I tried to contact them but got no response. I used the main email for the hospital:
"post at unn.no"

If anyone knows a better contact for the FMT research team I'd like to try emailing them.

EDIT: nvm, found it https://en.uit.no/om/enhet/ansatte/person?p_document_id=66830&p_dimension_id=88108

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@Avena This is their previous study for FMT & IBS where is lists those details: https://clinicaltrials.gov/ct2/show/NCT02154867