• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Research Council of Norway invites ME-patients to propose research projects

Kalliope

Senior Member
Messages
367
Location
Norway
This is potentially great news!! The Research Council of Norway wants ME-patients to take part in decisions on what kind of research projects they should prioritise

Here a google translation from the Norwegian broadcaster NRK from today:

Want input from ME patients

Now patients with ME, or chronic fatigue syndrome, be deciding what that should be researched in terms of this disease.

Research invites ME patients to provide input that will form the basis for new research projects.

Other affected, as relatives and therapists can make suggestions. Managing Director of the Research Council Arvid Hallén says they have great expectations:

- We hope to get input on issues and problems that nobody has thought of before, but which are important for those who are directly affected by these disorders.

The suggestions should be sent via a form that will remain over a month on the Research Council website. A user panel with both patients and scientists will then be based on the submitted suggestions and concretize research projects.

- The aim is to produce results quickly be able to put to use, says Hallén.

ME Association positive
Norwegian ME Association, which is the largest association for these patients, is pleased that Forskningsgrådet go out and ask for input from those affected.

- This is a very good initiative from Forskninsgrådets side, and it suggests that they take ME patients seriously, said Secretary General of the association, Olav Osland.

He hopes this will help ensure that the treatment offered ME patients is improved.


Other groups
It is the first time the Research Council go out and gather input on this way. But it will not be the last. Hallén, say they want to let other affected groups to offer their insights on what they think it should be researched at:

- This is the first part of which shall be consistently, there to draw users into the identification of research needs. Often, users have been forgotten, he said.

Conscious decision
Hallén said the decision to start with ME patients is done in consultation with the Ministry, and that choice is deliberate.

- That's because this is a disease we do not know enough about, but many are affected. And maybe precisely because the understanding of disease and suffering is not good enough, users will be able to provide valuable input.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I would recommend they invest more in epidemiology and genetics. Scandinavia have always been good at these and with a stable population and government run health insurance system they are in a good position to do more. I would particularly like to know about long term natural history of ME/CFS in the light of the previous Norwegian incidence study. The suggestion that people with adolescent onset ME may relapse at age 35 is something that would be worth confirming or otherwise.
 

Tuha

Senior Member
Messages
638
I dont know anything about science so I dont know what is the best way to move ME research and understanding of this disease. Certainly I would like to see some treatement options as soon as possible. Especially the ones which would at least decrease the exhaustion.
Does this mean that norwegian governement wants to finance ME research regulary? Do we know if the support will be significant?
 

A.B.

Senior Member
Messages
3,780
The suggestions should be sent via a form that will remain over a month on the Research Council website. A user panel with both patients and scientists will then be based on the submitted suggestions and concretize research projects.

So what kind of people are on the panel? Hopefully not Norway's worst psychobabblers and their patient-puppets...
 

Kalliope

Senior Member
Messages
367
Location
Norway
Here is more information from the website to the Research Council (google-translated)

Disease states by prolonged fatigue - what is the need of researching?

Research Council wants suggestions for research on diseases with prolonged fatigue. We primarily to patients and their families, but also to clinicians. The deadline for comments is Tuesday, 3 May 2016.
Prolonged and pervasive fatigue, with or without pain, is a serious and relatively common disease state. The state has several designations, as CFS (Chronic Fatigue Syndrome) and ME (myalgic encephalopathy). It is characterized by the disease causes are complex and unclear, it is not found biological markers for the condition and that there is scientific disagreement about the symptom-based diagnostic criteria. As a result, it also lacks good treatment to patients.

Directorate of Health estimates that there are between 10,000 and 20,000 patients with CFS / ME of varying severity in Norway. Many experience major health problems for a long time and feel bad attended by health care. Research activity has been increasing in recent years, both in scope and approaches, but the need for more research and better knowledge of the CSF / ME is still large.

Why this approach?
There are several ways to identify knowledge needs. Health programs at the Research Council is now trying out an approach which in Norway has been named "The needs identified research". There should be research which provides knowledge that particularly sought by users of health services, and that is to be employed in the service of relatively short term. We therefore want input on research needs which could form the basis for new research projects.

What we need new research when it comes to CFS / ME? Research addressing this question primarily for patients and their families, but also to clinicians. We invite you to submit proposals for research by completing this form by Tuesday, May 3, 2016.
What happens after May 3?

Research will convene a broad-based user panel, consisting of patients, families, health professionals, health authorities and researchers who will provide advice on research needs and what is useful research for people who have CSF / ME. This will be achieved through a three-part process towards prioritizing specific research projects.
The first task of the operation panel is to assess initiatives to research needs or research question that has entered the deadline 3rd May 2016 (step 1). Based on the operation panel priorities of the proposals, we will formulate a specific announcement that scientists are invited to respond.

Researchers will initially submit a simplified application with a brief project description (step 2). User Panel assesses and ranks the applications on the basis of how they answer the needs and expected benefits as this is requested in the announcement. Various researchers who submitted a simplified application will then be invited to submit a full application (step 3). These applications will be treated in a similar manner as ordinary applications for health programs. Planned deadline for submitting a simplified application is September 7, 2016 and for the full application on November 23, 2016.

Research will publish a short report with general discussion of research proposals that have been received. Announcement Text and invitation to a simplified application (step 2) is scheduled to be published on the Research Council's website in June. Please note that none of the operation panel members may submit or be involved in an application for a research project. Name of the panel members will be announced in early May.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I would recommend they invest more in epidemiology and genetics. Scandinavia have always been good at these and with a stable population and government run health insurance system they are in a good position to do more. I would particularly like to know about long term natural history of ME/CFS in the light of the previous Norwegian incidence study. The suggestion that people with adolescent onset ME may relapse at age 35 is something that would be worth confirming or otherwise.

I hope you'll write and tell them!
 

msf

Senior Member
Messages
3,650
I would like to see an investigation into the effect of changes in the amount of sunlight on people with ME. Norway seems perfect for this, since I believe that some regions have very dark winters (with lots of polar bears!).

P.S. I was joking about the polar bears, I know they all go to Denmark for the winter!
 
Last edited:

Jonathan Edwards

"Gibberish"
Messages
5,256
If this is confirmed what would it suggest? Why would this information be important?

It would probably suggest that adolescent onset and 35-peak onset ME/CFS are causally related rather than two different illnesses. It would tend to make me think that immunological regulation was less likely to be a main factor in such cases. The two peaks are of themselves quite puzzling but I wonder if they have something to do with shifts in central nervous or autonomic control mechanisms.
 

Dolphin

Senior Member
Messages
17,567
Live Landmark and the Lightning Process crowd is already on it... She's encouraging her followers (3200+ on Facebook) to "help out" :eek:

https://www.facebook.com/live.landmark/posts/10153417371146781
Also:

Lightning Process i Norge
6 hrs ·
Nå har du muligheten til å komme med innspill til Forskningsrådet hvis du ønsker at det skal forskes på ME og Lightning Process kurset!
Now you have the opportunity to bring input to forskningsrådet if you'd like it to be researched me and lightning process class!
 

ryan31337

Senior Member
Messages
664
Location
South East, England
The suggestion that people with adolescent onset ME may relapse at age 35 is something that would be worth confirming or otherwise.

You can chalk up one more person to that theory. Gradual onset here aged 10, severe by age 12. Gradual but consistent recovery followed, by 18 I had only very mild symptoms until another gradual onset to severe from aged 30. Aside from a wobble in my early 20s but I think I had onset of celiacs to blame for that :bang-head:
 

Old Bones

Senior Member
Messages
808
I would particularly like to know about long term natural history of ME/CFS in the light of the previous Norwegian incidence study. The suggestion that people with adolescent onset ME may relapse at age 35 is something that would be worth confirming or otherwise.

This situation describes me -- adolescent onset (age 12), full recovery for approximately 20 years, and disabled by age 34. Has anybody else experienced something similar?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
It would probably suggest that adolescent onset and 35-peak onset ME/CFS are causally related rather than two different illnesses. It would tend to make me think that immunological regulation was less likely to be a main factor in such cases. The two peaks are of themselves quite puzzling but I wonder if they have something to do with shifts in central nervous or autonomic control mechanisms.

We're a bit OT but why would this suggest CNS/ANS stuff rather than immune stuff?
 

Dolphin

Senior Member
Messages
17,567
I would recommend they invest more in epidemiology and genetics. Scandinavia have always been good at these and with a stable population and government run health insurance system they are in a good position to do more. I would particularly like to know about long term natural history of ME/CFS in the light of the previous Norwegian incidence study. The suggestion that people with adolescent onset ME may relapse at age 35 is something that would be worth confirming or otherwise.
I tend not get too excited by epidemiological ME/CFS research as the diagnosis is often based on questionnaires so is not very solid.

When there are good cheap diagnostic tests, I will get more excited by epidemiological studies.

And if one just goes by people with (existing) confirmed diagnoses, one will normally only get a small percentage of the total ME/CFS population so likely a biased sample.
 

A.B.

Senior Member
Messages
3,780
It would probably suggest that adolescent onset and 35-peak onset ME/CFS are causally related rather than two different illnesses. It would tend to make me think that immunological regulation was less likely to be a main factor in such cases. The two peaks are of themselves quite puzzling but I wonder if they have something to do with shifts in central nervous or autonomic control mechanisms.

Do you know why adolescence seems to trigger the illness? Or other illnesses. The usual answer is hormonal changes, but what is it about those that causes such big problems for some? There must be more.