The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Kalliope, Apr 10, 2016.

  1. Kalliope

    Kalliope Senior Member

    Messages:
    366
    Likes:
    3,530
    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.
     
    Simon, actup, rosie26 and 21 others like this.
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,217
    Likes:
    31,670
    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.
     
  3. Kalliope

    Kalliope Senior Member

    Messages:
    366
    Likes:
    3,530
    Norway
    Maybe they should get an invitation to the upcoming Invest in ME-conference and meet with researchers, doctors and patients from many countries.
     
  4. Tuha

    Tuha Senior Member

    Messages:
    628
    Likes:
    1,071
    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?
     
    perrier, rosie26 and MeSci like this.
  5. A.B.

    A.B. Senior Member

    Messages:
    3,733
    Likes:
    23,092
    So what kind of people are on the panel? Hopefully not Norway's worst psychobabblers and their patient-puppets...
     
    mango likes this.
  6. Kalliope

    Kalliope Senior Member

    Messages:
    366
    Likes:
    3,530
    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.
     
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,160
    UK
    I hope you'll write and tell them!
     
    mango likes this.
  8. msf

    msf Senior Member

    Messages:
    3,186
    Likes:
    4,437
    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: Apr 10, 2016
    justy, alkt, helen1 and 1 other person like this.
  9. Tuha

    Tuha Senior Member

    Messages:
    628
    Likes:
    1,071
    If this is confirmed what would it suggest? Why would this information be important?
     
    rosie26 and helen1 like this.
  10. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,974
  11. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,426
    South Australia
    Valentijn, NL93, A.B. and 2 others like this.
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,217
    Likes:
    31,670
    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.
     
    actup, rosie26, medfeb and 5 others like this.
  13. helen1

    helen1 Senior Member

    Messages:
    970
    Likes:
    1,346
    Canada
    Snow Leopard likes this.
  14. Dolphin

    Dolphin Senior Member

    Messages:
    10,640
    Likes:
    28,096
    Also:

     
  15. ryan31337

    ryan31337 Senior Member

    Messages:
    430
    Likes:
    960
    South East, England
    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:
     
    actup, sarah darwins and Old Bones like this.
  16. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    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?
     
    Hutan, actup, ryan31337 and 1 other person like this.
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,160
    UK
    We're a bit OT but why would this suggest CNS/ANS stuff rather than immune stuff?
     
  18. Webdog

    Webdog Nothing left to say

    Another anecdotal. Onset age 15. Relapses every few years, but the relapse I never recovered from was right around my 38th birthday.
     
    actup and sarah darwins like this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    10,640
    Likes:
    28,096
    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.
     
    Cheshire, Kati and Marco like this.
  20. A.B.

    A.B. Senior Member

    Messages:
    3,733
    Likes:
    23,092
    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.
     
    panckage and actup like this.

See more popular forum discussions.

Share This Page