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Norwegian Research Council with 30 mill NOK (3,7 mill USD - 2.9 mill GPB) to ME-research

Discussion in 'Latest ME/CFS Research' started by Kalliope, Oct 3, 2016.

  1. Kalliope

    Kalliope Senior Member

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    The Norwegian Research Council just announced that there are 30 mill NOK available for ME-research. An English version of the article will arrive soon, according to their website.

    Requirements for applications are that the Canadian criteria are used, exclusion of patients with other explanations of fatigue (such as psychological illnesses), objective measures of interventions, research which might lead to a biomarker, applications building on existing knowledge. National and/or international cooperation across professions is important and will be regarded as positive.

    They are asking for applications on
    1 Aetiology
    2 Treatment
    3 Identification and prognosis
    4 Care and follow-up

    Applications must be written in Norwegian.
     
    Joh, Snowdrop, Cheesus and 53 others like this.
  2. daisybell

    daisybell Senior Member

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    Now that's great news! I think I love Norwegians!
     
    helen1, Cornishbird, Theodore and 7 others like this.
  3. Sidereal

    Sidereal Senior Member

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  4. slysaint

    slysaint Senior Member

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    See it can be done. MEGA organisers take note.
     
    Sean, Cornishbird, Jan and 6 others like this.
  5. Jill

    Jill Senior Member

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    Well how bout some other country doing rituxan trials . Eg Uk, or maybe NZ .
     
    Cornishbird and MEMum like this.
  6. Sasha

    Sasha Fine, thank you

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    Wow - @Kalliope, would you like to put $3.7 m and $2.9 m in your title, to make those giant numbers easier to read?

    This is great news - not just the amounts, but the criteria.
     
    Cornishbird, Jan, MEMum and 5 others like this.
  7. A.B.

    A.B. Senior Member

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    Tiny Norway spends half as much as the big US on research into this illness.

    Norway GDP $500 billion.
    US GDP $16000 billion.
     
    L'engle, Jan, MEMum and 8 others like this.
  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    That`s amazing, proud to be norwegian.

    Ironically they are inspired by the english national institute of health research, well at least ironically with regards to the treatment of ME/CFS in the U.K.
     
    Daisymay, Theodore, *GG* and 9 others like this.
  9. Simon

    Simon

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    So as well as putting money into the Rituximab trial, Norway, a tiny country relative to the UK, has just put up more money for mecfs research than all the major uk funders have put into biomedical mecfs research - ever. It really is time the UK funders took this illness seriously.
     
    Comet, helen1, alex3619 and 26 others like this.
  10. veganmua

    veganmua Senior Member

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    Yes! I'm first in the queue for the UK trial!
     
    MEMum likes this.
  11. TiredSam

    TiredSam The wise nematode hibernates

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    I'd check who's running it first ...
     
    Hutan, hixxy, *GG* and 3 others like this.
  12. veganmua

    veganmua Senior Member

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    University College London, with Dr Amolak Bansal, Dr Jo Cambridge, and Professor Jonathan Edwards as advisor. Will be heavily based on the Norwegian trials. Info from http://www.ukrituximabtrial.org/IIMEUKRT FAQ.htm
     
  13. RogerBlack

    RogerBlack Senior Member

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    I question if a trial is needed.
    The Norway trial of ~150 patients and controls is to report back next year.
    It seems clear from the prior work that it's not a 'cure' for most.
    It very significantly benefits probably over half of people taking it.

    However.
    A percent of people get quite serious reactions to it.
    About one or two a thousand get PML - which is a severe, often fatal condition called PML - Progressive multifocal leukoencephalopathy.

    This is not a hugely safe drug.
    It is possible or perhaps probable the Norwegien tial will give better data on responders to this, and subgroups for who it's appropriate in.

    It's even possible that the 'Elite responder' effect may dissapear on the larger blinded trial, though I don't consider this likely.
    But, if you can identify that quarter of responders by some marker - or indeed the half that won't benefit at all, this is vitally important before starting to treat many, or indeed doing a much larger trial.

    A trial of 500 patients likely will have one die due to treatment.
     
    natasa778 and Solstice like this.
  14. Cinders66

    Cinders66 Senior Member

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    Heartening news, we so need multiple research teams in every developed country. Example to rest of the world. I'm quite surprised by the relatively short time frame too. State funders offering up guaranteed money is the best way to draw in drs quickly and saves time them applying for rounds of funds or crowdfunding for cash which can take years.
     
  15. TiredSam

    TiredSam The wise nematode hibernates

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    I was being flippant, it slipped my mind that that there really was a trial. Didn't mean to disparage anyone involved.
     
    veganmua and BurnA like this.
  16. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I also think a trial should wait until phase 3 results are clear.

    By the way: No one in the literature have gotten PML by rituximab alone. The ones u refer to were old (the immune system gets "weaker" and weaker the older u get), and were either on chemotherapy as well, or severe immunosuppressived from having it in the past. Neither does serious reactions with rituximab alone seem to be frequent (based on what is reported in the fb-group with pasients taking it privately), I have yet to see it reported.

    Based on this I would disagree and rather state that rituximab taken alone is hugely safe compared to almost all other treatments of chronic conditions. our bodies does not heavily rely on b-cells in the blood.
     
    snowathlete, bctjr1993, rebar and 4 others like this.
  17. TiredSam

    TiredSam The wise nematode hibernates

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    German footballer (Olaf Bodden) was given rituximab 20 years ago, reacted allergically and never recovered, he's currently in a wheelchair and hasn't left his flat for 18 months. I heard somewhere that's the reason the Charite don't try rituximab on CFS patients.
     
    Theodore likes this.
  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    yes but he really does seem to be a 1 in 50 case or something the like. i think we must accept that when we try to get rid of a disease that completely alters your daily function
     
  19. BurnA

    BurnA Senior Member

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    1 in 50 doesn't exactly reassure me! Chances of getting ME are a lot lower than that I imagine, and look how that worked out for all of us :)

    But anyway this thread shouldn't end up being another rtx discussion - it's about Norway spending more money on ME and they are the only country actually doing an RTX trial !
     
  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Well there are varying degrees of getting worse, the bodden case seems to be very rare

    didnt work out great

    at least we didnt get elephantiosis or zombie disease (just something that mimicks it)
     
    BurnA likes this.

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