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

deleder2k

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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.

Perhaps you could share this with the Research Council of Norway? They also said that they want feedback and ideas from doctors - not only from patients. One is supposed to fill out a short survey with the 4 following questions:

In what area do we need new research into CFS / ME ?

What specific issues should be investigated further ?

Why is this important for this population ?

Why is this important and useful for practitioners? (health services)
All questions carry a 1000 character limit.



I am sure they will be very interested in what you say.
 

deleder2k

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I would like to know what is causing muscle fatigue, accumulation of lactate, possible oxigen distribution in our bodies.
I think these problems are significant in lmost each patient. I think this is the reason why we are so exhausted. I can live quite good with other symptomps but what kills me is that horrible exhaustion.
I think that muscle exhaustion is a significant part why we are so exhausted. Maybe a research in this area could move us significantly and give us a treatement soon

Very interesting indeed. Fluge et. al suggests that we suffer from a endothelial dysfunction, possibly due to impaired regulation of NO(?). FMD in patients with ME is greatly reduced.
 

Mark

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Apologies if this has already been covered (sadly I don't have time to read the whole thread right now) but do we know what the deadline is for this? This sounds like a fantastic opportunity, and we're in a great position here to draft the outline for a study (or studies) as a community. If we were to do so in sufficient detail, we might stand a good chance of our proposal being accepted, and we could also avoid the common danger of asking for something and getting something that fits the description technically, but which is awful in other respects. We could also hold surveys or polls, to see which of the proposed ideas the community is most enthusiastic about, and which proposed study they prefer. That evidence, and Phoenix Rising's endorsement, might help our proposal to stand out. I don't know how much time we have to put something together but it would be wonderful if a community-submitted research proposal actually ended up in real science; that would be kind of like our first real study.

ETA: This might be a good thing to work on anyway, even if we miss the deadline for this one, as similar opportunities may arise in the future and it'd be good to have proposals waiting in the wings.

It seems to me from a very quick scan that what they are talking about in the invitation is really 'chronic fatigue', and while this isn't of course ME, if that's what they want to study then I agree with the idea of focusing on epidemiology. What matters, really, is that a good definition is used somewhere within the study, so that results are available to compare that subgroup with the rest of the CF patients. For example, if all participants were carefully diagnosed such that we can tell whether they have CCC, ICC, Fukuda etc, and that comparison was included in the results, that could tell us something useful about ME even if it's a CF study.

I suggest we follow Jonathan's thoughts re: epidemiology and genetics, as those are important areas and clearly the Norwegians are very strong in these areas. One thing I'd like to know, if it could be included under this heading, is whether there's any connection between ME/CFS and people with autism or asperger's. From comments on the forums, and in my real life, there seem to be disproportionate number of ME/CFS people who have autism or aspergers, including quite a few accounts of women with ME who have autistic children. There may well be genetic links there; anyway I'd like these kind of associations to be teased out, seems to me they might tell us something if we found such links.
 

Sasha

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It seems to me from a very quick scan that what they are talking about in the invitation is really 'chronic fatigue'
In the actual call from the govt it's ME/CFS. :woot:

Mark said:
but do we know what the deadline is for this?
May 3. Here's the actual call for proposals, via Google Translate (I think from the Research Council's site? Not sure what "forskningsradet" means):

http://www.forskningsradet.no/progn...t_behov_for_a_forske_pa/1254016809461&lang=no

forskningsradet said:
Disease states with 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.

Written by:
Published:
04/10/2016
Last updated:
04/10/2016
 

Sasha

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I wonder if this bit is key:

Norway said:
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.
Maybe that's a bad translation but is the implication that they want something that will pay off in the short term? I think we need a proper Norwegian to translate this!
 

Kalliope

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May 3. Here's the actual call for proposals, via Google Translate (I think from the Research Council's site? Not sure what "forskningsradet" means):

http://www.forskningsradet.no/progn...t_behov_for_a_forske_pa/1254016809461&lang=no
Forskningsrådet = The Norwegian Research Council

Maybe that's a bad translation but is the implication that they want something that will pay off in the short term? I think we need a proper Norwegian to translate this!
Agree completely, @Sasha If no one else can take the job, I'll try to make a go on a more proper translation in a day or two.

Someone asked Forskningsrådet/The Norwegian Research Council on Facebook the same question as you, and they seem to be open for all kinds of proposals. This is a pilot project (asking patients for input). I guess they expect answers only from Norwegians, but I see no reason why ME-patients from other countries shouldn't contribute. In fact, I think it is important for them to become aware of already existing research projects world wide, the Invest in ME-conference and international collaboration among patients and researchers.

A new google-translation (sorry!) from their website with more info on the process:
(The person who has written this works on this project. His name is Geir Ås and his e-mail address is gaa@forskningsradet.no Maybe someone would like to get in touch with him and ask if they would be interested in proposals from patients abroad - and if it would be ok to send those proposals as e-mail to him rather than using the form on their website in Norwegian).

Allows patients suggest research questions

Research invites patients with chronic fatigue syndrome (CFS / ME) for a pilot project named "needs identified research". Here, patients even get to suggest what should be researched.

"Needs Identified research" 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.

In 2016 samples Research new methods for identifying knowledge needs. We set including a pilot project where patients, families and clinicians are invited to record research needs that will form the basis for new research projects.

In the pilot project we address ourselves to patients with prolonged pervasive exhaustion with or without pain.

- We want input from those who live with and close to the disease, so that we ensure that we capture the issues and knowledge sought by users of health services. The aim is to produce results quickly be able to be used in services, says CEO of the Research Council Arvid Hallén.

Input to the research questions can be submitted through an online form that will be available until May 3rd, 2016.

A user panel of patients, families, clinicians, health officials and scientists will then be based on input and design a 2-step funding announcements. The plan will be the first application deadline in October. This way to collect input on a trial basis for Research.

- We are very excited about both input and process and hope and believe that through the pilot will have initiated several projects that will be useful for patients and services, says Hallén.

Written by: Geir Aas
 

Sasha

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Thanks for all that info, @Kalliope!

Kalliope said:
In fact, I think it is important for them to become aware of already existing research projects world wide, the Invest in ME-conference and international collaboration among patients and researchers.
I agree - it's very important that they don't accidentally reinvent the wheel because they don't know what's going on. They may not be aware of the total lack of good epidemiology on this that they're in a unique position to do. They need to be part of the international research effort, and use what knowledge others have already provided, and develop research projects in the gaps.

Mark said:
we're in a great position here to draft the outline for a study (or studies) as a community. If we were to do so in sufficient detail, we might stand a good chance of our proposal being accepted, and we could also avoid the common danger of asking for something and getting something that fits the description technically, but which is awful in other respects. We could also hold surveys or polls, to see which of the proposed ideas the community is most enthusiastic about, and which proposed study they prefer. That evidence, and Phoenix Rising's endorsement, might help our proposal to stand out. I don't know how much time we have to put something together but it would be wonderful if a community-submitted research proposal actually ended up in real science; that would be kind of like our first real study.
Mark, I know you've always been keen for PR to have some sort of process for creating something that expresses the community's view (the need or opportunity arises every now and again), but there have always been limits on how much time you've had to put into it. Maybe you could treat this project as a sort of test-run for the decision processes that you've got in mind?

The deadline is three weeks away - it's doable if we focus, but only if we get on with it in a structured way.

What do you see as the first step in the process?

Edit: @Kalliope said "The person who has written this works on this project. His name is Geir Ås and his e-mail address is gaa@forskningsradet.no Maybe someone would like to get in touch with him and ask if they would be interested in proposals from patients abroad - and if it would be ok to send those proposals as e-mail to him rather than using the form on their website in Norwegian)."

So maybe that's the first step - and to check if it's OK to submit in English.
 
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Sasha

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if it would be ok to send those proposals as e-mail to him rather than using the form on their website in Norwegian).
The form reads (Google Translate!):

You are hereby invited to suggest issues that could form the basis for important new research.

Your contribution can help to improve the treatment of and care for patients with CFS / ME.


In what area do we need new research into CFS / ME ? (Max. 1000 characters )

What specific issues should be investigated further ? ( 1000 character limit )

Why is this important for this population ? (Max. 1000 characters )

Why is this important and useful for therapists ( health ) ? (Max. 1000 characters )

Which group do you belong to ?
Patient / family
treat in the primary processes
in the Specialized others treat
other​

Thanks for your input!

Research will publish a newsletter with general discussion of the proposals received after May 3rd.​


1000 characters is about 180 words.
 
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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.
Just speculation but vast majority of pwme women. Is adolescence then 35 related to hormone levels? 36-40 is common time for perimenopause and pregnancy becomes harder at this time. POTS also often comes on at adolescence does it get worse/come back at 35? My POTS got dramatically worse at 34 (not officially diagnosed until 36 though).
 

Marco

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The anecdotes do seem to keep coming in. If there is genuinely a re-dip in health in those with teen onset at 35 I think that may tell us something really important. We know very little about the way brainstem functional regulation shifts with age for instance. The other factor I find intriguing is that the 35 peak is the same as for MS, which affects the whole CNS. But once one has some data it is easier to tease out the options.
I'm a bit late coming back on this but I was reminded lately of Jarred Younger's findings of the correlation of leptin levels with increased symptoms and that he doesn't feel that leptin is the problem but that it sensitises microglia perhaps exposing a peripheral stressor such as a low level infection (or whatever).

Leptin is primarily produced in adipose tissue and consequently leptin levels are higher in females. Could peaks in the teens and around 35 coincide with 'puppy fat' and 'middle age spread'?
 
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Yes leptin interesting. Feeling the middle aged spread :(

Does anyone know of previous extended pedigree ME studies? This could be an interesting area to ask for research. A couple of search options aren't really showing any.

When I heard that Darwin candidate for posthumous ME diagnosis I Googled and came across this study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632469/ claiming him for mitochondria issues (which isn't necessarily incompatible with ME). I was interested in this family tree as they took a broad view of different health problems

(See http://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click on image to zoom&p=PMC3&id=3632469_21fig1.jpg if diagram not displaying)
It looks at all the variations in health problems across the family eg

"Erasmus Alvey Darwin (1804–1881), Charles elder brother, graduated in medicine from the University of Edinburgh but never practiced. Instead, he spent a life in London partly as a socialite and partly as a chronic invalid (Healey 2001). He suffered from abdominal pain and lethargy; today he would probably be diagnosed as having chronic fatigue syndrome. His symptoms are consistent with his having had the same mtDNA mutation as his younger brother but with a lower level of heteroplasmy.

Susannah (“Sukey”) Darwin (Wedgwood) (1765–1817), Charles and Erasmus’ mother, suffered chronic ill health... "

They speculate about A3243G mtDNA mutation being a common cause of *different illnesses* within the family.
"If the conclusion that Darwin’s illness was due to a mtDNA mutation is accepted, then the detailed, lifetime history of his illness and those of family members shows us the range of symptoms that may occur with the one mtDNA abnormality."

Do you think it would be useful research to choose case study families with more than 1 pwme and then look in detail at other relatives' medical history and genetic info?

Obviously we suggest things from our own experience (there's even suggestion that Darwin's interest in genetics came about due to his family tree). My sister and I have both had severe ME. A maternal cousin had something similar undiagnosed and recovered. My maternal aunt was seen as someone always feeling ill and had various intolerances/allergies but ended up getting Parkinsons, another Neurological condition (as did her father).

I think there's loads that should be researched. It's very hard to pinpoint one thing to suggest... I'm also leaning with impatience towards something that looks at benefits of existing treatment/supplements in a similar design to Jared Younger's new Gulf War study or Mendus. Although necessary, research into root causes and specific ME medication is likely to be years away from actually helping us. Is there a place for more sticking-plaster, short studies which we can benefit from in about a year?
 
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What about Th2 dominance and things like inosine that might help shift to Th1? Most Internet searching comes up with anecdotal evidence rather than research. Does this need investigating?

Also autoantibodies have come up in recent ME and POTS research. Is there anything that could help this treatment wise? (I think rituximab was related to this but are there other treatments too?)

Glucose issues. There's a lot of anecdotal stuff about problems with sugar but the research doesn't look at this much. One of the Newton studies showed glucose uptake problems in muscle.

Are pwme usually poor metabolisers in a genetic sense?

I've had high creatine kinase on a bad myalgia day and normal on a low pain day. Worth studying in a large sample?

There are so so many topics I'd like researched!
 

Kalliope

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Wow. The Norwegian Research Council has received 737 proposals on ME-research. Not bad!

Here is a google-translation from their website on this from today

737 input for ME research

Research has received 737 suggestions for research on CFS / ME patients and their families. The input proposes research on everything from diagnostic criteria and causes of treatment and follow-up care.

From April 10 to May 3, the Research Council invited patients with CFS / ME and their families to provide input into research topics and research questions.

We have received 737 contributions. They show a very large need for knowledge about everything from diagnostics through causes of treatment and follow-up care. There are also many that give to know that they think that the knowledge about the disease among health workers is inadequate.

Managing Director of the Research Council Arvid Hallén, is impressed with both the breadth and quality of many of the ideas, saying they form a good basis for further work.

- We are very pleased with the massive involvement and desire to help identify knowledge needs of ME, says Hallén.

- Now we look forward to continue working with all input and user panel to facilitate good research that can help improve the lives of patients and their relatives.

The way forward
Research is working on putting together a wide user panel that will discuss the feedback and prepare a funding announcements. Because we have received far more input than expected, it may be necessary to push the original schedule for the announcement, which was in the middle of June. The panel will sit patients, families, clinicians, researchers and health officials.

The composition of the panel is expected published during May. We will also publish a short report with general information about the feedback we have received.