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Norwegian rituximab study NOT started

Discussion in 'Rituximab: News and Research' started by Roy S, Oct 13, 2012.

  1. Sing

    Sing Senior Member

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    Good research takes a long time. Probably when results from further study do come out, there will be results from several other research projects all crowding for attention at the same time. (I wish) "Don't all talk at once!" is what I want to say to this silence.
    MishMash likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Unfortunately if there is a crowding for attention at same time .. it will probably be having to complete with psychological CFS studies. They always seem to put a lot of those out around the same time when a good ME/CFS study comes out (its a tactic I believe is used to try to make sure the good studies dont get as much attention)
    heapsreal and ukxmrv like this.
  3. Snow Leopard

    Snow Leopard Senior Member

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    It takes months to get a paper published, so any timing is limited to the media, rather than the actual publishing of the article.
    alex3619 likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    True.. but I think the Wessely schoolers, that they probably are right now already arranging psych studies to be published when they hear the rituximab study is.. They are having more then enough time to do so so they could submit their studies (while also holding some in reserve to follow up.. to try to drown out info they dont like) .

    Look at how fast some psych schoolers did and got out a XMRV study after the original finding was.. before anyone else could do follow up studies.. I was shocked at how fast they did a study and got it published to debunk.

    and then that was followed up by more psych studies (not XMRV ones done by psych school people). Some of them being on journal boards I think dont even have to go throu peer review process (from what Ive heard). They can just have a study ready to be put in...submit it skipping peer review (depending on what journal they are putting it in and how they are linked).

    Watch and see, either this or they start to do a ton of media Interviews (usually Wessely speaking out)
  5. Roy S

    Roy S former DC ME/CFS lobbyist

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    http://www.tv2.no/nyheter/magasinet/marian-levde-23-timer-i-doegnet-paa-soverommet-3931188.html

    (translation: Google Chrome)

    Marian lived 23 hours a day in the bedroom

    -ME patients are desperateto get healthy, says Marian Ripel, hoping that the Research Council next week will put the money to further research into ME riddle.

    In 2006, the 41-year-old mother of three from Husnes in Hordaland diagnosed with ME, also known as chronic fatigue syndrome at Haukeland University Hospital.

    - At the worst, I was lying on the bedroom blindfolded and plugs in his ears 23 hours a day, she said to TV 2

    ALSO READ:
    ME patient: - We got hope, but now we face a wall of silence

    Progress- I got an offer to be part of a research program in which they were to test a cancer drug as a treatment for CFS symptoms. It took two months before I felt any effect, but then I felt that I could stretch my own abilities longer and longer, says 41-year-old.

    She has experienced several relapses, but every time she has a new dose, the advances repeated.

    - I know I can not go on this forever, but now I rejoice to have power back, says Marian Ripel.

    Help educator is today partly in the job, and also takes extra shifts in the ambulance service. On top, she started nursing education.

    - Not long ago it was I who needed help. Now I can help others. This is as it should be, says Ripel.

    ALSO READ:
    Anne was sick with CFS for four years - so did her boss well

    ME sufferers are an invisible group Next week Research distributing 520 million from the scheme independent projects (FRIPRO).

    Council has received 1,026 applications for a total of 6.8 billion dollars.Researchers from all disciplines can apply, and there is scientific quality is the primary criterion for the award.

    Haukeland project Marian Ripel has been missing for nine million dollars to do a study to a much larger scale than the first.

    - I sincerely hope ME research gets the money it needs. Most ME sufferers are desperate to recover. They are an invisible group that has received little attention, says Marian Ripel.

    ALSO READ:
    ME sufferers "Gunnar" was not believed - was admitted to a psychiatric
  6. Belive

    Belive

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    Norwegian ME asociation has started collecting donations to kick the next large rituximab study by Fluga and Mella. If you want to support, use this link for payment by web:
    http://me-forskning.no/english/

    They need about 1,3 million dollars, some of wich already recived.
    taniaaust1 and Roy S like this.
  7. Battery Muncher

    Battery Muncher Senior Member

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    This seems pretty important - why don't you post it in the "Action Alerts and Advocacy" forum?
  8. Bob

    Bob

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    Cort's blog, on his new site, has some interesting info:
    http://www.cortjohnson.org/blog/2012/12/29/rituximab-watch/

    He says that the next round of funding from the Norwegian government's research funding body will be in spring 2013, and that the Rituximab study has attracted a lot of public and political attention in Norway, and that the health minister has promised action on ME. Government funding for the trial sounds promising, but not definite.

    Cort includes links through which donations can be made, towards funding the Norwegian Rituximab study, including this link, which has paypal, Visa, and Mastercard payment options:
    http://www.meandyoufoundation.no/
    (Note the English text translation in the second column of the webpage.)
    (Also please note that I have not personally checked the credentials of this website, nor read the content.)
    justy likes this.
  9. Bob

    Bob

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  10. Bob

    Bob

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    I've just been looking at the Mella and Fluge Rituximab Trial paper.

    I might have got all of this wrong, because I've only had a quick look at it, I haven't studied it in detail, or double-checked my calculations, but the Rituximab Trial makes an interesting comparison to the PACE results.

    It's not a totally like-for-like comparison, because many factors maybe different, but it's an interesting superficial comparison.

    For PACE, 65% 'improved' in the control group, and an extra 11% to 15% improved in the treatment groups. (Chalder fatigue scores.)
    For Rituximab, 7% experienced 'major' improvement in the placebo control group, and an extra 53% experienced 'major' improvement in the treatment group. (Based on 'fatigue' scores: "a Fatigue score was calculated as the mean of the four symptoms: Fatigue, Post-exertional exhaustion, Need for rest, Daily functioning." - I'm not clear about what this means in practise.)
    http://www.plosone.org/article/fetc...ournal.pone.0026358.t003&representation=PNG_M

    For PACE, SF-36 physical function scores, there was an 11.6 point mean improvement in the control group, and an extra 7.1 to 9.4 point mean improvement for the treatment groups.
    For Rituximab, SF-36 physical function scores, there was a 4 point mean maximum improvement in the placebo control group, and an extra 9 point mean maximum improvement for the treatment group.
    http://www.plosone.org/article/fetc...ournal.pone.0026358.t004&representation=PNG_M

    Considering the latter set of figures (above), the Rituximab study doesn't look very impressive.
    But maybe I'm missing something.

    Considering the first set of results (above), in which the results are very different in each trial, I'm not sure why the second set of results are so similar in the treatment arms of each trial.

    I'll have to read through the paper again. I've read it before, but I can't remember any details! :confused:
  11. Firestormm

    Firestormm Guest

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    Am rather kerfuddled by the status of the trials. I thought we'd heard the Norwegian Government had passed on further funding quite recently. And yet the other day I read this from IiME on their conference blurb:

    Is that still then 'technically' correct but simply hasn't happened because they didn't have the money - or are these funding allocations no longer applicable?

    Thanks in advance.
  12. Bob

    Bob

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    That info is not current, Firestormm. I don't know if it applies to what was promised or expected from the Norwegian government, but the recent round of research funding did not allocate funds to the Rituximab trial.
    Firestormm likes this.
  13. Firestormm

    Firestormm Guest

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    Thanks Bob. You know it comes as an immense relief when ones memory is shown to have not let one down for a change :)
    Bob likes this.
  14. Bob

    Bob

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    Yes, it's very welcome when the memory actual works, isn't it! :)
    Firestormm likes this.
  15. ibenagnes

    ibenagnes

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    merylg and Bob like this.
  16. alex3619

    alex3619 Senior Member

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    PACE tested a mature technology. The Rituximab study if I recall correctly was a phase 2 pilot study. It included full recoveries. This stage of study is not about getting the protocol right, its just a test along the way. Phase 3 is much more important in terms of actual results.
    Valentijn likes this.
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    [ http://www.tv2.no/nyheter/innenriks/helse/ingen-penger-til-videre-meforskning-3940193.html

    (Translation: Google Translate)

    No money to continue ME research

    [​IMG]

    NO MONEY: The National ME study by doctors at Haukeland University Hospital, Olav Melle (right) and Øystein Fluge plan received no funding from the Research Council. Foto: Barbro Eikesdal / TV 2


    Research shared Wednesday from 215 million allocated to projects in medicine, health and biology in 2013. ME research received no money.

    Many ME patients and their families have been waiting for news about the Research Council grant money for 2013. The doctors at Haukeland University Hospital had applied for money to start a so-called multi-center study. Research project to Fluge and Mella was not on the list of those receiving support.

    Fluge and Mella received great attention both at home and internationally, when, in October 2011 published a study on the treatment of ME. For the first time there was a medicine that seemed to help this patient group. This gave hope.

    Read also: Elene (26) recovered from ME

    A larger multi-center study, which can investigate further on ME, has been planned for some time, but funding is still lacking. - We continue - When the chance is 10-15 percent so it is no surprise when one does not get the money, says professor and oncologist Olav Mella to the website of TV2

    [​IMG]

    DISAPPOINTED: Laila Dåvøy (KrF) is extremely disappointed that not Fluge and Mella got money for research. She will now challenge the government to provide what is missing. Foto: Åserud, Lise / Scanpix

    Despite the lack of assignment is Mella still positive with a view to launch a larger study.

    - We will continue to work to start the study. There have been allocated in the state budget this year and next year. It would surprise me if no trial gets underway in the foreseeable future, says Mella.

    Should there be long Mella think that other countries will follow.

    See also: Missing eleven million of ME study

    - There are initiatives in other countries and especially the United States, he said. - It is impossible Member of Parliament for KrF, Laila Dåvøy are very disappointed with the news.

    - It is very sad that we do not have adequate treatment for some of the very sickest people in our country.

    She is disappointed Research Council's decision, but most races against the government.

    See also: Norwegian breakthrough can solve CFS mystery

    - I am furious at the government for not initiating this research project to Fluge and Mella. Nine million is nothing in the state budget, said Dåvøy.

    - It had meant a lot that they had received money. First and foremost, in terms of signal power that this population is believed, says Laila Dåvøy the website of TV2

    - I'll go on the podium today and challenge them, says Dåvøy. Tough competition It was not just Haukeland-doctors who had applied for funding for CFS research. Two other projects, including Public Health, had sought several million. None of the three applications for ME research was granted.

    Read also: Rørte ME patients sees hope after scientific breakthroughs

    - The competition this year, as in previous years, been very hard in this announcement that has scientific merit as the primary criterion for the award. Unfortunately we had to say no to many eligible projects. It has been particularly pronounced commitment applications from Fluge and Mella. Both this and the application of Bruun Wyller considered worthy of support, but funding was insufficient, Research writes in an e-mail to the website of TV2
    Interest in the award has been great and this impresses Research.

    - There has been an impressive commitment from individuals in this matter and we thank you for any input. Research would like more involvement in research, they write in e-mail. 34 projects were supported Although it was not given money for ME research in this round, there are 34 other projects that actually get support. Includes 26 research projects, seven postdoctoral fellowships and support for the event.

    The complete list see the forskningsradet.no .

    Applications for research projects and personal postdoctoral fellowships were technically assessed in a total of twelve international expert panels.

    Get news alert from TV 2 news as SMS. Send NEWS to 1984 (4, - € / msg) <ins><ins></ins></ins>
    [​IMG] (barbro.eikesdal@tv2.no) Barbro Eikesdal (barbro.eikesdal@tv2.no)
    barbro.eikesdal @ tv2.no (barbro.eikesdal@tv2.no)
    Published 05.12.2012 11.44
    Updated 05.12.2012 13.30
    Read also: All about ME breakthrough Facts about ME study that gives hope to millions of people Missing eleven million of ME study [​IMG] Rørte ME patients sees hope after scientific breakthroughs [​IMG] Norwegian breakthrough can solve CFS mystery [​IMG] American professor applaud Norwegian research results [​IMG] From ME-fresh notified Elena diary: - Today I fried minced and extracted record ME doctors get two million to further research [​IMG] Requires investigation of Norwegian ME treatment [​IMG] Elene (26) recovered from ME
  18. Firestormm

    Firestormm Guest

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    Thanks Roy. Perhaps this then is the source of some optimism and frustration? The allocation in 2012 wasn't met due to a general lack of money - not enough to go around - but Mella appears to suggest there is another allocation for 2013 also?

    What strikes me as odd is that an allocation implies money set aside for the purpose. To me at least. Clearly it doesn't. Perhaps it is an intention to fund and not a definite commitment...

    End result is that money wasn't forthcoming.
  19. Bob

    Bob

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    It's been suggested that the research council has acknowledged that the quality of the research funding application was acceptable, but the study just wasn't chosen on this occasion (to fund, from the limited funding pot.) It was simply not the preferred choice to allocate money to, on the last funding round. There is another funding round in spring 2013. It seems that the Norwegian govt has been making positive noises re ME funding in general, if not making an outright promise to fund the Rituximab trial.

    For up-to-date info, I recommend reading Cort's blog (click here), and Jorgen Jelstad's blog (click here.)
    Firestormm likes this.
  20. Snow Leopard

    Snow Leopard Senior Member

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    I was under the impression that the study was supposed to be part funded by the state budget (already allocated) and part funded by the research council (not granted).

    I certainly hope the trial will start in the second half of 2013!

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