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News from Scandinavia

Discussion in 'Regional news' started by Kalliope, Nov 2, 2017.

  1. inox

    inox Senior Member (Voting Rights)

    Messages:
    539
    Location:
    Norway
    I do agree, overall, but think this is just this years focus for applications? :) It's been focus on biology earlier years, rituximab, Liens lactate study, an unpublished immune study etc have gotten money.

    And I think it's good, to stimulate some research in symptoms relief now. Norwegian patients have problems with for instance access to pain and sleep clinics, as there is no evidence base for such treatments. Even getting to try out B12 and saline can be hard, for the same reason. It would have been good to know, one way or the other, if some of these things could help a bit, as any real treatment realisticly is years away. Or just to get some of the severe patients some deasent pain relife.

    Also, I think it's a wise choice, for this years grants. To both generate continuing interest into donate to research, to this year focus on somehing that might be helpfull in a shorter timespan. And to keep up patients morals, as many people feel quite down over the negative rituximab result and the thought that there is no help coming for years yet.
     
    ladycatlover, MEMarge, Hutan and 3 others like this.
  2. Rain

    Rain Senior Member (Voting Rights)

    Messages:
    180
    Agree, @Dolphin. I believe that the symtoms mentioned will fall into place as soon as the cause is targeted. In my experience, many of us is not even able to tolerate drugs towards symptom relief of sleep and pain.
     
    Dolphin likes this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    The Norwegian ME Association has published a report about severe ME based on a survey among 586 ME-patients and 198 carers. The report has been presented to the Norwegian Directorate of Health today.

    Når nøden er størst er hjelpen nærmest borte

    Not able to give a summary in English at the moment, but perhaps some other forum members can? In that case I suggest a thread is created for the report as I'm sure its contents will be of interest for the forum.
     
    Last edited: Jun 24, 2019
    Aroa, rvallee, MSEsperanza and 11 others like this.
  5. mango

    mango Senior Member (Voting Rights)

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    2,505
    This is brilliant, thank you so much! :)

    I've started a thread here with some quotes from the summary, translated into English.
     
    Aroa, inox, Anna H and 10 others like this.
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    6,237
    Location:
    Norway
    Oh, thank you SO much @mango That was a great help!!
     
    Aroa, inox, Joh and 6 others like this.
  7. mango

    mango Senior Member (Voting Rights)

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    2,505
    Great Twitter thread (in Swedish) about giving informed consent to participate in research and allowing your medical data to be shared, why ethical approval doesn't guarantee that the risk assessment is realistic, advice on how and where to find what you need to know, lack of reporting of harms, etc.

    https://twitter.com/user/status/1144249146536288256
     
    MSEsperanza, inox, Anna H and 8 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    2,042
    Location:
    Aotearoa New Zealand
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    The Danish ME Association is running an online survey for Danish ME patients on illness progression.

    The survey consists of 14 questions, takes about 5 minutes to answer and is anonymous.

    The survey is based on a similar survey from the Norwegian ME Association which received over 5 000 responds. Hopefully the Danish survey will enable a comparison of the situation for Danish and Norwegian ME patients.

    Spørgeskemaundersøgelse om ME-patienter i Danmark - Sygdomsforløp
     
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    The Norwegian Public Broadcaster (NRK) recently had an interview on radio with the former athlete Ingunn Ullerhaug in connection with covering the recent study from Katarina Lien on blood lactate accumulation.

    Now Ingunn Ullerhaug has written a debate article which is currently on the front page of NRK.

    She tells how she got ill with ME and became well again after six years by monitoring her levels of lactate acid.

    She used to be a professional cyclist, and often exercised over 30 hours a week. She says that during such weeks it was seldom she had lactic acid values over 4 for more than a few minutes at the time. When she got ME, she started to monitor her lactate acid levels and discovered her levels could stay over 4 for several hours in a row. Every day. After having done simple things as walking up a staircase her levels could be so high that her device couldn't even measure it, as it stops on 25.

    She says that by monitoring her lactate acid levels and using her knowledge from top level athlete, she is now healthy again and works as a psychologist. (In the previous radio interview however she said she worked part time and had improved, not recovered)

    She says she now meets ME patients through her work and that the stories she hears are frightening about the incompetence of ME among health care workers.

    Ingunn Ullerhaug - Fra Tour de France til ME
    google translation: From Tour de France to ME

    Imagine participating in the Tour de France. You ride about four hours a day, which is 28 hours a week. For most of this time, you cannot have lactic acid values above four, otherwise you will not be able to continue. When sprinting or when moving in the mountains, you cross the border, but rarely for more than one hour per day. That amounts to a maximum of seven hours per week.

    By comparison, as an ME patient, I could have a lactic acid measurement over four for more than 70 hours per week. In other words, I was over the pain limits ten times as long as a cyclist in the Tour de France. Believe me, that's also how it felt.
     
    Last edited: Jul 6, 2019
  11. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Measuring her blood lactate sounds very similar to what Mark Vink has done (he published a paper about it).
     
    Amw66, It's M.E. Linda, Hutan and 5 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I just read the following in the ME Global Chronicle:
    Is that correct? Is there an annual membership fee, and if so what is it?
    That association seems like it might be by far the best I am aware of in terms of its membership based on the population. Any idea how many are in other countries? I imagine the figures mightn't be huge, given the information is in Norwegian.

    Background: the population of Norway is just 5.28 million.
     
  13. andypants

    andypants Senior Member (Voting Rights)

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    1,334
    Location:
    Norway
    Correct.

    Membership is around $40/year, and the government matches that with around $55 per member if I remember correctly.
     
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    4,986
    So am I reading this correctly that there is an agreement that the government contributes based on the membership figure?
     
  15. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,494
    Location:
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    Ow, so that's approximately 5000 x 100 or 50.000 dollars per year of revenue through membership. Whish we could set something up like that in Belgium...
     
  16. Trish

    Trish Moderator Staff Member

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    Location:
    UK
    500,000?
     
  17. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
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    Location:
    Belgium
    Yes, sorry. Wow, that's a good model.

    I always thought it was best to keep membership cheap to attract enough followers and then try to collect money by fundraising and reaching out to healthy people (ME/CFS patients usually don't have a lot of money). But if those numbers are correct, then this seems like a pretty amazing model to collect revenues to invest in research. Even if the government doesn't help out, that's still 40 x 5000 or 200.000 dollars a year.
     
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,986
    One can't necessarily assume a big turnover means a lot of money for research. Action for ME stopped having a research fund in the early 2000s when its income was around 1 million UK pounds* per year. It has restarted but it is still relatively small compared to its turnover; though some is better than none.

    A lot of national patient organisations seem not to have research funds at all.

    *Around US$1.25 million
     
  19. inox

    inox Senior Member (Voting Rights)

    Messages:
    539
    Location:
    Norway
    Yes, this is the same for (almost) all voluntary/nonprofit organisations. There is also possible to apply for extra funds based on the organisations activity level - at least organisations aimed at children/youth (not familiar with for adults). Activities in the form of a course/classes. Different departments also have funds for spesific causes one can apply for.

    Is this uncommon? It's just such an everyday thing, I've never thought to ask how it's done other places. If interested, there is a general description of the politics in the link, a commentary to the national budget:

    https://translate.google.com/transl...el-3-Andre-saker-/8-Frivillighetspolitikken-/
     
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,986
    I don't think I remember coming across it in any English-speaking countries.
     

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