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

RogerBlack

Senior Member
Messages
902
It is a stated objective that the research results can be applied in the health care services relatively quickly.

Hmm.
I don't think anyone at this point can seriously claim that the various *omics research will credibly lead to a cure 'relatively quickly'.

What, plausibly could be done with that caveat?
Research into PEM with the goal of working out better home managment of the energy envelope?
A 'test'.
 

Kalliope

Senior Member
Messages
367
Location
Norway
I’ve tried to find out more on how this announcement might be of use also for researchers outside Norway.

The receiver of funds from The Norwegian Research Council must be employed by a Norwegian institution. A foreigner without any connections to a Norwegian research institution may not apply for funds. Formally it is the institution who is the applicant/responsible for the project.

However, they do encourage international cooperation with researchers abroad. Normally different researchers bring funds from their countries into an international collaboration. Provided it serves the research-quality of a project, it may be carried out in another country than Norway with a collaborator researcher, but this must be described and given grounds for in an application.

Here is information from the Research Council’s website for applicants from abroad:
http://www.forskningsradet.no/en/For_applicants_from_abroad/1138882214032

So it might be worth bringing info on this announcement to researchers outside Norway as well. For instance I believe a cooperation with a Norwegian (university) hospital and maybe Stora Sköndal in Sweden might be interesting - should any researchers be up for that, as they seem to have planned a lot of interesting projects. The multi-centre RituxME trial is wonderful for many reasons, one is that more hospitals have been getting involved in research on ME in Norway - and more enthusiastic researchers are recruited to the ME-field.

Perhaps this is something that will be discussed among researchers at IACFS/ME later this month?
 

mango

Senior Member
Messages
905
For instance I believe a cooperation with a Norwegian (university) hospital and maybe Stora Sköndal in Sweden might be interesting - should any researchers be up for that, as they seem to have planned a lot of interesting projects.

Excellent idea! :)
 

mango

Senior Member
Messages
905
@Kalliope Thank you so much for your brilliant suggestion :)

This has now been brought to the attention of one of the main people at the Stora Sköndal ME/CFS centre, and I've emailed him links to the info pages on the Research Council's website too :) Also, he will be attending the IACFS/ME conference.
 

Kalliope

Senior Member
Messages
367
Location
Norway
@Kalliope Thank you so much for your brilliant suggestion :)

This has now been brought to the attention of one of the main people at the Stora Sköndal ME/CFS centre, and I've emailed him links to the info pages on the Research Council's website too :) Also, he will be attending the IACFS/ME conference.
That's great, @mango ! Well done :thumbsup::thumbsup:

I really can't see much downside of The Research Council receiving interest also from abroad. If not all projects can be supported - I am sure they'll appreciate people outside Norway noticing their announcement and their pilot-project on supporting user-identified research.
Applications and thus identifications of research projects/needs might result in further commitment from the Council, maybe on a Scandinavian, European or international level? (ok, I know - I'm dreaming... but still...)

Five hospitals in Norway are now involved with the RituxME-trial, The Norwegian ME Association have a specialist council, there seem to be an increasing interest for this subject, so I am certain there are a number of people and institutions in Norway one can reach out to in order to discuss whether a collaboration on a research project is possible.

A collaboration with Norwegian researchers/institution will give an opportunity to apply for the funds from the Council. It is a substantial amount.
 
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Kalliope

Senior Member
Messages
367
Location
Norway
The Research Council of Norway received 19 applications for ME-research.

The applications will now be reviewed by their user-panel who will advice on which applications should proceed to next step. Those applications will be reviewed again by a panel of international experts before final decision is made on which projects will receive support.

Haven't seen any information on who is in the panel of international experts..
 

Kalliope

Senior Member
Messages
367
Location
Norway
11 research projects made it to the second round in the application process.
We'll know the final answers on which research projects will receive funding by summer.

The projects looks very intriguing!

Here are the titles on the research projects (in Norwegian - not up for any translation today, sorry..):
http://www.forskningsradet.no/no/Ny...rinn_2_av_MEutlysningen/1254024146239?lang=no

Good luck to the applicants!
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
Google translate


11 candidates will be invited to step 2 of the ME announcement
Now invited researchers to submit complete applications to be evaluated by international experts.

11 of 19 projects will be invited to step 2 of the announcement of 30 million to needs identified research on CFS / ME.
Applications that proceeding covers all four areas of the text of the advertisement: Causes, Treatment, Mapping and stream studies, Services and follow-up.
Read the full background to the announcement and the steps here.
A user panel of patients, families, clinicians, researchers and governments have considered relevance, user interaction and value in all the 19 simplified applications that arrived in November. User Panel has recommended which applicants are invited to submit a complete application.
In the table below you see the titles and institutions behind the applications are invited to step 2.

Oslo University
How are ME them? -a long-term study of factors associated to the disease course and prognosis in patients with CFS / ME

NIPH
Chronic Fatigue Syndrome / Myalgic Encephalopathy (CFS / ME): Who is affected and why?

Helse Bergen HF
Therapeutic B-lymphocyte depletion and immunomodulatory treatment of ME / CFS

Akershus University
Cause mechanisms and biomarkers in adolescents with CFS / ME after mononucleosis:
Epigenetics, B cell function and functional brain imaging

SINTEF
Services for people with CFS / ME: experiences and effects (ME-UP)

University of Bergen
Disturbances in energy metabolism as possible factor in the disease mechanism of ME / CFS

FAFO
Better services, better health and living conditions for patients and relatives

University Hospital of North Norway
Treatment of CSF / ME with fecal transplant, a triple-blind controlled randomized study

University of Oslo
Genetic studies of CFS / ME to examine the involvement of the immune system

University of Oslo
Molecular causes of aberrant physiological response to physical stress in CFS / ME

University of Bergen
Stream and long-term prognosis in ME / CFS in children and adolescents: A prospective, population-based follow-up study
 
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wastwater

Senior Member
Messages
1,271
Location
uk
Is wonder if you could try a small amount of rituximab to see if it seemed beneficial rather than having full dose straight away
 

Kalliope

Senior Member
Messages
367
Location
Norway
They look great, with the exception of this one. First, it uses CFS/ME, and secondly, it has an acronym, that's just too similar to the standard operating procedure of the BPS fruitloops.
Not necessarily :) They published a thorough and harsh report in 2011 on health care (or rather the lack of it) for ME-patients in Norway. If they do a similarly good job this time it might turn out useful.

There are several places in Norway offering CBT and GET as treatments for ME. It is not my impression that the effect of these approaches has been evaluated thoroughly - enabling the providers to continue their "treatments".
 

Kalliope

Senior Member
Messages
367
Location
Norway
... and of course a letter to the editor was written to a newspaper by an LP-coach furious that a research project from dr. Wyller on LP and ME didn't make it to second round in this project. She claims the Norwegian ME Association is an organisation based on ideology (as in biomedical research. sic), and hijacked the whole decision-process (The ME Association had two representatives in a group of 12).

The Research Council answered today:
(google translation)

- An important premise for just this designation is to provide those affected, involved and has been little heard until now, the ability to choose research topics and prioritize the applications they consider most useful. The initiative triggered great enthusiasm. We received over 700 contributions to research on ME. Based on input formed a panel composed of patients, families, clinicians, researchers and health officials an invitation to scientists to submit an application sketches.

- Of the 12 users in the panel four represented two ME associations in Norway, with over 4,000 members. In addition, the panel consisted of an independent former patient and an independent relative. We knew of the deep academic controversy in advance and tried to put together a balanced panel.

- Research Council's health programs are thematically broad and covers thus also various types of research on ME. And more research is needed and knowledge of ME than the earmarked 30 million can provide.