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

Kalliope

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Here is an update from the Norwegian Research Council. All in all this looks very promising.

Google translation:
Disease states with prolonged fatigue - what is the need of researching?

The Research Council has asked for proposals for research on diseases with prolonged fatigue from patients and relatives. We received 737 input to the deadline on Tuesday, 3 May 2016. Now the feedback is reviewed by a user panel.

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 badly 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.

The method
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.

From 10 April to 3 May 2016 we asked why the input to the research needs that may form the basis for new research projects.

We received a total of 737 input from patients, families, caregivers and organizations in both domestic and foreign.


The contents of input
Of the 737 input was 114 input blank. Of the remaining 623 input draws most forward needs and research questions in several areas. This is both desirable and understandable. The fact that the input is complex, however, has made it a bit more difficult to group them.

Research has nevertheless made a discretionary assessment of the kind of research that is requested in the input and rough sorted them into six categories: Cause, Diagnostic Criteria, Treatment, Prevention, Monitoring and Others.

Many of the proposals contains proposals in more than one category, usually in two, but also three and four categories. We've simplified by specifying the two categories which we believe emerges as importantly from submitter's side.

The graph shows whenever knowledge needs related to one of the categories mentioned. As many suggestions mentioned need for several types of research will be the sum of the categories in this graph over 100 percent.
Research need most of respondents think it is important to find answers about "causes" of CFS / ME. In other words, research that may help to answer the question of why someone gets CSF / ME and what is underlying and precipitating causes of the disease. This category is mentioned in 59 per cent of all input.

The category mentioned Drogba is "treatment" by 40 percent. The group holds both curative treatment (treatment that makes you healthy) and symptom management.

The third major category is research on "follow-up" of, and arrangements for those who are sick (18 percent).

Research on "diagnostic criteria" is also mentioned many times (16 percent). Many of those not mentioned diagnostic issues during questions regarding research needs and research questions in the web form, mentioned this during one of the two questions which dealt with the benefits of research.

The two categories "prevention" and "other" (that which can not be placed in any of the other groups) occurred in getting input.

Explanation of categories
The input contains a number of quite detailed questions and hypotheses. And it is not possible to create a complete summary of everything we received. We reproduce therefore only the highlights of the respondents' comments.

causes
Many questions are related to the importance of infection in the disease (caused by bacteria, viruses or parasites), inflammatory role, immune system's response and function (autoantibodies), bacterial and viral flora in the intestines, intolerance to food, oxygen absorption / energy metabolism in muscle cells and disturbances in the hormone system.

Many are also concerned about CFS / ME has a hereditary component, and if the disease is related to personality traits or childhood factors.

In addition, the tab inputs that are concerned about CFS / ME is related to stress, or other somatic or mental illnesses. Vaccines, exposure to environmental toxins, molds and high frequency radiation is also mentioned by several.

diagnostic Criteria
Respondents are also concerned that the disease is not uniform and that there are probably talking about several subtypes of the disease or even various diseases.

Therefore it is very important to look for and find a biological marker (eg. Substance in the blood) of the disease. Many believe that it must distinguish between ME and other conditions which provide prolonged fatigue (CFS). It is in any case necessary that one always makes an account of the diagnostic criteria used when patients participate in a study, because this is a prerequisite for obtaining new knowledge about different patient groups (heterogeneity of the patient population).

Quite a few advocates that it is the sickest ME patients particularly need for researching now, and many believe that patient group "young people" must be given high priority.

Treatment
Many are concerned that research is much more about how the disease can be treated.

Among those wanting a standing portion more "biomedical research", and with the means, as we understand it, research related to treatment with drugs or other substances. It includes studies with Rituximab, Cyclophosphamide, Valecyte, Ampligen, Low-dose Naltrexone (LDN), nitroglycerin, saline infusion, vitamin B12 injections and gamma globulin / Gammanorm, to name the proposed many times.

It is also a great deal that means we have researched various techniques to cope with the disease, and of these, it is especially Lightning Process mentioned. It is important to find out more about who can and can not be helped by the different treatment measures. What characterizes the good stories and what characterizes the bad?

Follow-up
Several advocates that there should be a thorough mapping of the complex patient group and what kind of health care provision available. What characterizes them is actually being helped, that gets better or completely healthy, and what characterizes them as not being helped?

There is a need for more knowledge about the prevalence, course of disease, symptom burden and severity. In addition to knowledge about quality of life, in view of diagnoses and severity of disease. There is need for research on their situation and their need for support, and the patient encounters and experiences with health services and NAV.

Patients experience that many doctors and other healthcare professionals have insufficient knowledge, both about the disease and its consequences and what opportunities there are for assistance in health services. They also describe the frustration among health because they do not know how to help patients.

Some have experienced direct mistreatment and disrespect, many people find that they are not believed. But most patients are confident that healthcare professionals have genuine desire to provide good health care.

User Panel and the road ahead
Research has put together a wide user panel of patients, families, clinicians, researchers and health officials.

Together with the Research the panel's first task was to be based on the feedback and prepare a announcement researchers can apply.

It has become necessary to shift the original schedule of the announcements because of the large amount of input. Research is now planning to publish the first call text in September, with a deadline in November.

Researchers will initially submit a simplified application with a brief project. 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.

These applications will be treated in the same way as ordinary applications to the Research Council's health programs. User Panel members may not submit or be involved in an application for a research project.

The composition of the operation panel


Role Organization / affiliation

Arild Angelsen Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Trude Schei Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
January Nygård (deputy) Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Nina Weering Small (deputy) Patient / Relatives Norwegian Myalgic Encephalopathy Association, Oslo
Oddny Sveen SELBAK Patient / Relatives M. E. Network in Norway, Bergen
Bård Johannessen Patient / Relatives M. E. Network in Norway, Bergen
Siren Deva (deputy) Patient / Relatives M. E. Network in Norway, Bergen
Eva Rullestad (deputy) Patient / Relatives M. E. Network in Norway, Bergen
Jorgen Jelstad Patient / Relatives Oslo
Trine Jakobsen Rydland Patient / Relatives Oslo
Cesilie Aasen Health Authority Department of Rehabilitation and rare conditions, the Health Directorate
Bodil Stokke (deputy) Health Authority Department of Rehabilitation and rare conditions, the Health Directorate
Bente MJØLSTAD Førsteamanusensis, physicians substitute NTNU, General Practice Research Unit
Ingrid Helland Specialist neurology National expertise service for CSF / ME, OUS
Sidsel Anne Toft Specialist Clinical Psychology Private Practice, Oslo
Randi Eikeland PhD, specialist neurology National expertise service for tick-borne diseases, Southern Hospital
Elling Ulvestad Department / Adjunct Professor Department of Microbiology, Health Bergen (Haukeland University Hospital)
Ingvild biscuits Program Director of CARE Professor, HiOA / Diakonhjemmet Hospitals
Bente Holm Mejdell Program Director in HELSEVEL CEO, Mental Health
Else Jorun Saga Program Director of HEALTH Patient ombudsmen, Telemark

User panel's first meeting will be on 20 June.
 

BurnA

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When I was at lime conference on Friday, during one of the tea breaks I got talking to a nice lady who turned out to be from the research council in Norway.
She told me they had requested ideas and feedback etc, and I told her I knew all about it.

She them mentioned the lightening process and I nearly spat my tea all over her in surprise. I am not exactly sure why she mentioned it, but I couldn't look her in the eye after that. I did tell her that I found it odd how Norway has provided some of the best research in the world from Fluge and Mella and yet things like the lightening process are also 'big' over there.

I think she got the message and I would certainly hope that after listening to all the speakers at iime that she would realise where the lightening process sits in terms of relevance to ME. It made me think though that they must have gotten some or a lot of feedback from the psych lobby in Norway.

I do want to stress, before anyone gets too excited, I genuinely have no idea why she mentioned it, whatever the reason, it was lost in translation by the time I understood what she was talking about.
I don't think she was advocating it in any way, I'd like to think she was surprised how people could support it but unfortunately the impression I got ( right or wrong ) was she was trying to figure out how the lightening process fitted in to the overall picture.
 

Bob

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It made me think though that they must have gotten some or a lot of feedback from the psych lobby in Norway.
That was very much the impression I got from the statement they put out about the submissions they've received - i.e. that there was some heavy-duty lobbying from the psych lobby and lightning process people. They wouldn't have had many patients lobbying for some of the things they mentioned.
 

Kalliope

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That was very much the impression I got from the statement they put out about the submissions they've received - i.e. that there was some heavy-duty lobbying from the psych lobby and lightning process people. They wouldn't have had many patients lobbying for some of the things they mentioned.
That's why I'm SO glad they attended the conference in London. It will hopefully make assessing future applications for projects on ME-research much easier for them.

Frankly, I have a hard time imagining just how confusing all the different theories on ME must be for people who are new to the debate.
 

BurnA

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Did you enjoy the conference?
I did thanks @Bob !

Kind of strange to be in a room with just about all the world's researchers of ME/CFS.

Was half thinking of writing a blog on it but not sure if I could live up to the high standards set recently by @TiredSam ( incidentally I did get to chat to Carmen Scheibenbogen which is more than tiredsam got to do during his visit to Charité )

Overall I'm glad I went because it's nice to hear things firsthand, and everyone is very friendly.
 

Esther12

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That Live Landmark (sp?) person was campaigning to have people call for Lightning Process research in Norway. She always comes across as a thicko whenever she's talking about medicine or research, but I think she's some minor celeb over there.
 

Living Dead

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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 speculate that the lump at 10-19 is overgrown, because the way they diagnose children and adults are different. At age 18 the patients go into adult healthcare and the diagnosis rate drops.
 
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I speculate that the lump at 10-19 is overgrown, because the way they diagnose children and adults are different. At age 18 the patients go into adult healthcare and the diagnosis rate drops.
I think that is a very reasonable consideration. The two hump Norwegian graph may have important hidden biases in it. However, the interesting thing is that boys have a peak rising at 12 but it fades out by 18. Girls have a peak starting at the same time but continuing to rise until late teens. It seems that there is a peak of incidence in teen years that we do not, for instance, see in MS, despite the peak at 35 looking very much like the MS peak.
 
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My son has Aspergers. Since becoming ill 7 years ago I have " Aspergers- like traits. " Son has very long spindly fingers , Ehleres Danlos? He is 15 now and started taking lemon juice and some of my supplements (probiotics) on his own.
He is high functioning and I consider my cfs to be moderate to mild. Maybe we did not get hit head on by the bus but sideswiped?

I hope the U S . Will look at the Norweigen studies and follow thier lead not replicate the same studies..
Love the global approach , will save money and lives.
 

Kalliope

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Earlier this summer a lecture on user-identified research on ME was held by a representative from the Norwegian Research Council on a conference in Norway. Here is the transcript. The lecture was held in English, but some of the slides are in Norwegian. Was pleased to see that this very thread and Phoenix Rising got a mention :) (they've been really thorough!).

If they are asked again to speak about this project, the transcript will be updated with info on the research projects which ended up being funded.

This could be an interesting lecture for upcoming conferences and I hope they will receive invitations.
 

Anne

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Here's my summary of the outcome, written for my Swedish ME/CFS newsletter in Swedish, and then explained in English for my international advocate friends. (Please notify me if you find something which isn't correct!)

Norska Forskningsrådets 30 miljoner till ME-forskning nu utdelade

Norges statsminister Erna Solberg tillkännagav i juni vilka projekt som fått anslag via myndigheten Forskningsrådets öronmärkta satsning med 30 miljoner för ME-forskning. Solberg besökte ett av forskningsteamen. Följande fyra projekt har tilldelats medel:

- Genetic studies in CFS/ME to investigate the potential involvement of the immune system and reveal biomarkers – Universitetet i Oslo

- Defective energy metabolism in ME/CFS – Universitetet i Bergen

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

- Fecal microbiota transplant in chronic fatigue syndrome - an RCT - Universitetssykehuset Nord-Norge, Harstad

Satsningen är unik då Forskningsrådet för första gången arbetat med intressentdialog i processen. De är mycket nöjda med intressentdialogen och slutresultatet. Forskningsrådets direktör John-Arne Røttingen har uttalat att intressenterna har bidragit till att identifiera projekt av hög facklig kvalitet och med stor potentiell nytta. Divisionsdirektör Jesper Simonsen menar att denna form av intressentmedverkan är en ny, viktig princip vid tilldelning av forskningsmedel.

Läs mer:https://www.forskningsradet.no/prog...t_behov_for_a_forske_pa/1254016809461&lang=no


Note to my English-speaking friends in the ME community:

If you haven’t already seen it, check out the four projects which won the grants in the $3.6 million RFA issued by the Norwegian equivalent of NIH. This sets a very interesting example for other countries, since this RFA process for ME was done as a pilot project in which the Norwegian NIH used stakeholder dialogue to guide the RFA phrasing as well as the first round of evaluation. First, they issued a Request for Information and asked the public to give input regarding the needs in the ME research field. Then patients, families and friends of patients, clinicians and researchers were enrolled in a stakeholder panel which was very influential in the phrasing of the RFA (Canadian Criteria, objective outcome parameters, biomarker research a priority) as well as in the first round of evaluation. The second and final round of evaluation was done the usual way, by international research peers. Result: four very promising projects, biomedical approach, no CBT/GET or Lightning Process in sight. The Norwegian NIH is very pleased with the results as well as with the stakeholder process. How do we get all of our countries to adopt a similar method?
 

Kalliope

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If you haven’t already seen it, check out the four projects which won the grants in the $3.6 million RFA issued by the Norwegian equivalent of NIH. This sets a very interesting example for other countries, since this RFA process for ME was done as a pilot project in which the Norwegian NIH used stakeholder dialogue to guide the RFA phrasing as well as the first round of evaluation. First, they issued a Request for Information and asked the public to give input regarding the needs in the ME research field. Then patients, families and friends of patients, clinicians and researchers were enrolled in a stakeholder panel which was very influential in the phrasing of the RFA (Canadian Criteria, objective outcome parameters, biomarker research a priority) as well as in the first round of evaluation. The second and final round of evaluation was done the usual way, by international research peers. Result: four very promising projects, biomedical approach, no CBT/GET or Lightning Process in sight. The Norwegian NIH is very pleased with the results as well as with the stakeholder process. How do we get all of our countries to adopt a similar method?
@Anne This is a very good summary! Thank you!

And I agree. This story needs to get shared globally - as it is a success story on user-involvement in research funding. This is particularly important when the issue at stake is ME, as the patient community is often far better informed in the field than traditional decisions makers.

The Research Council is working on a translation of their main article about this project. I'd love to discuss a strategy on how to make other countries aware of this method and how to share the English translation when it is ready.