Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

News from Norway - ongoing thread

Discussion in 'General ME/CFS News' started by Purple, Dec 19, 2012.

  1. Purple

    Purple Bundle of purpliness

    Messages:
    1,436
    Likes:
    2,489
    I just thought I would start a thread on which we could post all the media coverage and other relevant information and developments on ME/CFS and the Rituximab trials and everything relevant to ME/CFS and fundraising initiatives from Norway. There seems so much going on currently! It would be nice to have it all consolidated in one place.


    To translate - either copy the link address to Google Translate or, if you use Chrome, you will be asked if you would like Norwegian to be automatically translated.

    Any Norwegian speakers - feel free to weight in and help with translating if Google Translate and/or letting us know contents of videos.
     
    Sasha and Roy S like this.
  2. Purple

    Purple Bundle of purpliness

    Messages:
    1,436
    Likes:
    2,489
    Jarod, Bob and Merry like this.
  3. Purple

    Purple Bundle of purpliness

    Messages:
    1,436
    Likes:
    2,489
    This is a blog post on http://debortgjemte.com/ from 6 December, after the funding for the Rituximab trial was not allocated.

    http://debortgjemte.com/2012/12/06/me-forskningen-frustrasjonen-fremtiden/

    It ends rather poignantly:
    "This costs ie 9 million. People in this country are buying condos that cost more money. Here is an opportunity to influence the entire world for the same price."


    (Note: 9 million Norwegian Krona is approximately £1 million or US$1.6 million at today's rates)
     
    Sasha likes this.
  4. Bob

    Bob

    Messages:
    12,422
    Likes:
    37,493
    England (south coast)
  5. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,916
    UK
    That Xmas cards article is about Drs Fluge & Melle getting loads of Xmas cards from ME patients! Great story. Here's the translation on Co-Cure from the link above:

    Cancer Doctors flood of Christmas cards
    Olav and Øystein get up to 50 cards from ME patients daily.

    Anne Huso
    E-mail anne[dot]huso[at]ba[dot]no
    Published 19/12/2012 at 7:26

    Cancer Doctors Olav Mella and Øystein Fluge get Christmas cards for
    their efforts to solve ME-mystery.

    - We realized that there was something going on when we got so many
    letters with the address written correctly, because people tend to
    struggle with it, says Professor Olav Mella of Haukeland to BA.

    Christmas cards ACTION

    He says that Christmas cards began to flow into his job at the
    beginning of last week.

    Because he has been a lot of traveling, he has no visibility, but
    estimates that he together must have been over a hundred cards.

    Also colleague Øystein Fluge get more Christmas cards than normal this year.

    However, it is not quite common and Mella Cards Fluge received. The
    cards are a result of the Norwegian ME Association's Christmas card
    campaign, and is written by people who have ME, or have family or
    friends with ME.

    - Gripping tale

    - I have read all that has come, and it's compelling stories that are
    told. I have included received cards from a mother to her daughter who
    has been ill-ME for 25 years, says Mella.

    The reason for the action is that Fluge and Mella not received funding
    to conduct a larger study on ME.

    Previously they have had success with treating ME with cancer
    medicine, and believes to understand better what kind of disease ME is
    and how many patients can be significantly improved, some also feel
    completely healthy.

    They need, however, more extensive studies to confirm this. This
    searched the Research Council for funding, but they were not allocated
    funds for 2013.

    DON Drawers

    - Many people have a desire to make use of this medicine in future
    treatment, and when I know how desperate this group is, I realize that
    they were very disappointed. It is a patient group that has been
    misunderstood for many years.

    According to Mella was not unexpected that they received funding.

    - I think maybe part had some unrealistic expectations that we would
    receive these funds. There's very few projects that can get. ME is a
    disease that really have something special medical field, and
    therefore falls between two stools.

    Study they want to do to be performed on more patients than last time,
    and at several centers in Norway.

    - The problem with a small study is that it is possible that the group
    we have investigated by chance is different than the rest of the group
    who have ME. In the previous study, there were 15 who received active
    drug (medicine) and 15 who received placebo. Now we want to do the
    survey so that 70 patients receiving active drug, while 70 receiving
    placebo, says Mella.

    - Number of patients selected by statistical calculations of risk of
    ignoring a positive result. We also wish to draw experience from a
    study we've done in the meantime, showing that maintenance therapy
    prolongs the effect of the drug.

    2013 at the earliest

    He says that they do not intend to give up the fight.

    - We are going to make some smaller studies, including laboratory work
    to understand disease mechanisms - supported by the Kavli Foundation.
    In February, we will seek new funds to be awarded by the Research
    Council.

    It is also an opportunity to do the study in collaboration with
    researchers in other countries, but it is more demanding, says Mella.

    Anyway, he is happy that people send Christmas cards.

    - We are grateful for the commitment, and it encourages us to keep
    working. Christmas cards are a reminder of how much this disease costs
    both for those who are affected by it and those around.

    He estimates that if they are granted adequate funds, the earliest
    start with the large study in autumn 2013.

    PAPER-BA WEDNESDAY PLEASE READ WHY ME ASSOCIATION HAS STARTED CAMPAIGN.
     
    Merry, justy and taniaaust1 like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,916
    UK
    Only had time to skim this but you're finding good stuff, Purple! Thanks!
     
  7. justy

    justy Senior Member

    Messages:
    5,088
    Likes:
    10,707
    U.K
  8. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,916
    UK

See more popular forum discussions.

Share This Page