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Norwegian prime minister concerned about young ME-patients

Discussion in 'General ME/CFS News' started by Kalliope, Feb 6, 2017.

  1. Kalliope

    Kalliope Senior Member

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    Norwegian media have reported several places today the prime minister's concern for young ME-patients.

    Last year she asked Ministry of Health and Care Services to find out how many young people have ME. Today the report was given to her, and showed that about 270 pupils were absent from school last year for more than three months due to ME. The prime minister is worried the number might be even higher.

    She says to the newspaper Aftenposten:
    - These are conditions that may not have received enough priority because they do not fit into obvious categories. It's not like when a child has cancer. Then the hospitals and communities know what they should line up with, says Erna Solberg.

    From the article:
    - 27 percent of the municipalities / districts and 44 percent of counties have indicated that the figures are incomplete, but according to the Government, this is the best numbers you can expect to get now.

    - Overall 1877 pupils were absent for more than three months in the previous school year. 735 had another known diagnosis than ME, and 873 had unknown diagnosis. 14 percent of the long absence is explained by ME.

    More articles on this:
    Adresseavisa: "This strikes a lot of families"
    http://www.adressa.no/nyheter/innenriks/2017/02/06/Dette-rammer-mange-familier-14171865.ece
    NRK: "Erna wants to help young people with ME"
    https://www.nrk.no/trondelag/erna-vil-hjelpe-unge-med-me-1.13362260
     
    Last edited: Feb 6, 2017
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  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Kalliope do you know what criteria were used? Also the percentage of children in general, not just of long term Sick?
     
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  3. RogerBlack

    RogerBlack Senior Member

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    If we assume prime onset is 5 years, and the average age of the population is 50, that's 500000 people in the school system in the age in question, or 270/500000 or one in 2000.
    Out of school for >3 months is pretty much 'stopped going to school' I suspect.
    A lot more are likely to be struggling on I suspect.
     
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  4. AndyPR

    AndyPR RIP PR :'(

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  5. Kalliope

    Kalliope Senior Member

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    Good questions! I guess we have to assume different criteria have been used.

    As I recall this was an inquiry on long term absence from school due to illness in general, not just about ME, and it was not mandatory to report the diagnosis.

    So it's a start, and it's great to get some attention to this issue, but further identification of the problem is needed.

    The Norwegian ME Association - Department Rogaland - has worked on a similar report for two years together with the local hospital and the chief county medical officer. It turned out difficult to get exact numbers on how many young people with ME there are in the region.
    NRK: "Nobody knows how many ME-sick children there are"
    https://www.nrk.no/rogaland/ingen-vet-hvor-mange-me-syke-barn-som-finnes-1.13341757
     
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  6. Kalliope

    Kalliope Senior Member

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    Thanks @AndyPR . I assume your links generate traffic to the original articles too? Haven't figured out how to do that myself :confused:
     
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  7. AndyPR

    AndyPR RIP PR :'(

    Got to be honest I don't know but the translation is generated from the original URL for each page, so my assumption is each view of a translated page still counts as viewing the original page, I could be wrong though.
     
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  8. Cinders66

    Cinders66 Senior Member

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    She and other leaders need to be concerned about the numbers of under 65s long-term severely affected. I watched a BBC health report yesterday presenting as awful the fact that a man, waiting for an operation, was effectively house bound. I don't understand why in ME it's just accepted as fine for that population to suck up when for others it wouldn't.
     
  9. Barry53

    Barry53 Senior Member

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    What I cannot see in the links is whether treatment/research is likely to be psychological or physiological.
     
  10. aaron_c

    aaron_c Senior Member

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    Frankly, I'm pretty thrilled that a prime minister asked for a report on ME in the first place. Hooray for them! Or is Norway one of those countries where this will just lead to separated families and brainwashing?
     
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  11. Kalliope

    Kalliope Senior Member

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    Agree. My impression is that the prime minster's concern for ME-patients is genuine.

    However, she must listen to the expertise - and far from everyone's knowledge on ME among doctors is up to date.

    This report resulted in 38 mill NOK for a pilot project to develop a multi-disciplinary assessment for patients with longterm pain and fatigue. I am sure this is needed and maybe a lot of good can come out of it. However, my worry is that ME once again will be mushed together with other conditions. I would like to se more user-representation (as in ME-patients) among decision makers to avoid problems like this.

    We need to build up proper assessment and care for ME-patients specifically.

    Here is the press release from the prime minister's office (in Norwegian) for those who'd like to read.

    - The need for more research is highlighted, which is good.
    - Prevention of patients having to go back and forth in the system looking for help without receiving it, is also good of course.
    - Better financial support for parents who takes care of children with severe ME is also excellent.

    However, I get concerned with sentences like this:
    "Prolonged fatigue states (CFS / ME) are diseases that scientists know little about"

    Why on earth is ME described here as plural diseases?

    EDIT: I translated the Norwegian word "sykdom" to "disease", but "sykdom" has a wider meaning in Norwegian, and can cover all kinds of ailments, including biological diseases (but not only).
     
    Last edited: Feb 8, 2017
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  12. sarah darwins

    sarah darwins I told you I was ill

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    There's the catch, though, isn't it. Expertise means experts. And the question is — which experts?

    We know who we would say are the experts. But people like Chalder, Fink, White, Wessely, Crawley have been calling themselves the experts for so long that the medical establishment tends to assume it's true. And taking advice from these people is worse than not taking advice at all. Most politicians don't know any better and just assume that the people who say "we're the CFS experts" actually are.
     
  13. Kalliope

    Kalliope Senior Member

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    The pilot project will initiate at St. Olav's Hospital in Trondheim. I am not familiar with that hospital. Some doctors there have a psychosomatic view on ME, but the hospital is also part of the RituxME multi-centre trial. Let's hope they talk together..
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    I'll try to share your optimism :)
     
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  15. user9876

    user9876 Senior Member

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    I think the description of diseases goes against the psychosocial view point as they prefer syndrome so as not to acknowledge a biological cause.

    More generally I think quite a lot of researchers have the idea that there may be a number of different causal mechanisms behind similar symptom sets and hence there may be multiple different diseases. As a working hypothesis it seems sensible to look for multiple causes until one seems to be common. It may also be there are differing causes but some common mechanisms. But we don't know.

    So that sentence wouldn't worry me.
     
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  16. Grigor

    Grigor Senior Member

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    Wasn't last time when she made a public apology right after Fluge and Mella did something awesome??
    I think she's aware of the biomedical side of things??
     
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  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I agree with user9876. Pretty much everyone researching ME from a biological standpoint thinks of it as a cluster of diseases, if by disease one means a cause of a set of symptoms rather than just a name for a syndrome of symptoms. The idea that there is one special disease called ME is very likely unhelpful. That is why I am not so keen on SEID - which implies that there is one disease. There may be one final pathway to the symptoms but that is not what most people mean by 'a disease'.
     
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  18. Kalliope

    Kalliope Senior Member

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    Let's hope the doctors who are going to work on this pilot project are up to date on research, have a biological standpoint on ME and don't consider long term fatigue and pain conditions (including ME) as MUS/psychosomatic disorders.

    Things are moving along in this country, but there are still doctors who don't believe ME exists at all.
     
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  19. Valentijn

    Valentijn WE ARE KINA

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    Those types of doctors would never refer to it as a "disease". Disease = real & biological. Illness/disorder/syndrome/condition = debatable.

    It's basically the litmus test for quacks :p
     
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  20. Barry53

    Barry53 Senior Member

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    A very good observation I think.
     

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