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Good news! Norwegian govt funds Rituximab trial - possibly partial, amount not yet announced

Discussion in 'General ME/CFS News' started by Sasha, Jun 6, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Just seen this on Maria's blog! I've tidied up the translation a bit but I'm no Norwegian speaker so if anyone can do better, please do:

    http://mariasmetode.no/2013/06/forskningsradet-norwegian-research-council-today/

    Hooray! Good news! The Research Council has granted funding to the Phase 3 study at Haukeland Hospital today! This is a study to examine whether the results from previous studies are consistent. In previous studies, the researchers Dr. Fluge and Dr. Mella of the cancer ward at Haukeland Hospital found that 67% of ME patients had a good or moderately good effect of the immune drug Rituximab. We may face a medical breakthrough. Such findings have never been made ​​in this field.

    It is not yet announced how much funding the department at Haukeland Hospital has been assigned. At the website of the Research Council we can read that 40 million krone has been allocated across 10 projects.

    Through MEandYou I have collected roughly 2.5 million krone ($430,500, £279,400, 328,800 Euros) in 90 days through social media and through a tremendous commitment worldwide. It's good to see that funding health authorities can no longer watch the sick, their friends, relatives and supporters give their own benefits and savings to fund research on their own disease.

    I want to assure you that all the money you have given will go to Haukeland hospital and the scientists there, no matter what the outcome of the provisions taken by the Research Council and the amount given. I have great respect for all of you who have given of your savings or insurance to ensure further research into ME at Haukeland Hospital, and I long since established a contract with Haukeland, so that you can be completely safe. You will not feel cheated or deceived.

    I spoke with Professor Mella today. The funding deal from the council will not be ready before January. With our funding, they are comfortable to start right now. Actually they need more funding than they receive from the council. Those of you who want to continute to donate, please do so. I also hope that those who have fundraised for Haukeland will also transfer the money to the scientists now.

    This could be the beginning of a shift in the understanding of what ME is, how the disease should be treated and how it can be diagnosed. This could be the beginning of more prestige for researchers in this field, which will help recruit talented scientists, which in turn will lead to good-quality research - and not least, we will have findings that can actually help patients.

    This again will stop the eternal round dance of stigmatization of sick patients, either the idea that patients are imagining their illness, or that they have a fashionable diagnosis. This could mean that sufferers worldwide can get the right treatment they need and are entitled to have.

    Today we celebrate. We will be celebrating for a long time.

    Congratulations, everyone, who has helped make the injustice and the need for research into ME so visible, that today we see the results of our work.

    Cheers to all of us, The Knowledge Activists!
     
  2. Sasha

    Sasha Fine, thank you

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  3. urbantravels

    urbantravels disjecta membra

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    Maria has got English on that page underneath the Norwegian. The "two optometrists" must be Google Translate being especially creative because her post says in English, "Those of you who wants to continue donate, do so. "
     
  4. Sasha

    Sasha Fine, thank you

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    Considerably less weird than the version I had, that's for sure. :cool:

    Someone has posted a message of congratulations in Norwegian on Maria's Facebook page that Google Translate starts off as, 'Bolters for a good job'. I think that's how I will now congratulate people in future.

    Bolters, everyone! :balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
    snowathlete, Nielk, beaker and 5 others like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "Today, we slap the psychobbable in the face!
    Tomorrow we dance on it's grave!"
    :alien:

    (and no rodents were threatened in this post, :p
    just been playing "Civilization V" a lot, and a mod added some classic lines like that to the Kings & Queens, lol)
     
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  6. Maria Gjerpe

    Maria Gjerpe

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    Yeeeessss!

    Thank you for lifting MEandYou and the campaign! I think the pressure from all the donations from sick, together with the pile of money funded, was unbearably to watch in the long run. Don´t you?

    Lets celebrate the step in right direction!:hug:
     
  7. Sasha

    Sasha Fine, thank you

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    Yes, I think there must have been a lot of pressure on the funding council by now.

    Congratulations, Maria, and thank you! This is a fantastic achievement and you have led it. :balloons:
     
  8. alex3619

    alex3619 Senior Member

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    I think Rituximab is a potential cure. With funding we have a chance to find out. That could change the lives of millions of people around the world. Now I feel like a small child the night before Christmas waiting for Santa to arrive. I hate that waiting, but tomorrow will be a better day.
     
    justinreilly, Omar88, SOC and 8 others like this.
  9. Sasha

    Sasha Fine, thank you

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    So do I, as far as I'm able to understand this stuff (which isn't very far). The Open Medicine Institute have as their top priority project a megabucks $7.65 million Rituximab x Valcyte study - the hypothesis, as I understand it, is that you need not only to reset the B-cells but also clear the viral load for lasting benefit (according to Dr Peterson at the IiME conference, something Mark mentioned in his summary).
     
  10. anniekim

    anniekim Senior Member

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    Absolutely delighted. Such a huge step in the right direction and thank you Norway and you Maria :)
     
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  11. beaker

    beaker CFS/ME 1986

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    Thank you . I so needed that !! :lol::thumbsup: Bolters right back at you !
     
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  12. Sasha

    Sasha Fine, thank you

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    Bolters, beaker! :thumbsup:

    Here's a Google-Translate-mangled article in an online Norwegian news site:

    http://translate.google.com/transla...//www.vg.no/helse/artikkel.php?artid=10117089

    Allocates millions to find the answer to the riddle ME
    ** 140 patients to be treated
    ** Norwegian researchers receive international attention

    Two Norwegian researchers will now give 140 ME patients cancer medicine. The result can be the final step towards a solution to the ME enigma.

    AP follows
    Health and Medicine

    Research Friday gave several million to a national survey of the disease ME. The survey could be a seminal contribution to the country's ME patients.

    - This is very good news, especially for patients. Given the results of the maintenance study we have conducted, I shall not be surprised if we get positive results of this study, professor and consultant at Haukeland University Hospital, Olav Mella.

    It is not clear how many millions the two scientists will get the project. Basically, they requested 10 million dollars, but the total should reach to negotiation between the Research and researchers.

    Mella, together with his colleague, Chief Oystein Fluge, researched the effects of the cancer drug, Rituximab, in ME patients. The medication decreases drastically the level of immune cells B lymphocytes, which make antibodies in the body and also can make antibodies against the body's own tissues.

    - By taking the lymphocytes so you can get a significant symptom relief in two-thirds of patients, says Mella.

    This means that ME patients can finally be offered a medication that can relieve the mysterious disease. No one has so far failed to determine the reasons for fatigue syndrome.

    The results of the first study was published in 2011 and received international attention . Meanwhile Mella and Fluge investigated long-term exposure by the use of the cancer drug. Also it has yielded positive results.

    - We have given patients Feast of Rituximab up to fifteen months and then the effect is clearly more prolonged, says Mella.

    Author Hans Olav Lahlum gave 5,000 million in funding for the same research after he participated in the world's longest interview on VGTV.

    Content minister

    The two researchers are now testing the treatment on 140 ME patients across the country over two years. The results of the survey can be a big and important step towards finding treatment to between 10-15,000 ME patients in Norway.

    Health and Human Services Jonas Gahr Støre is satisfied that the two scientists now have the opportunity to examine the treatment also nationally.


    PRIORITY: Health and Human Services Minister Jonas Gahr Støre has sent a letter to the Research Council in which they ask that ME research priority. Photo: KRISTIAN HELGESEN
    - I am very happy for this decision. In my letter of award from the Ministry of Health, I asked the Research Council to prioritize applications on ME and fatigue states, said Health and Human Services Jonas Gahr Støre (Labour).

    In the survey, the 140 patients divided into two groups where one is a mock drug, and the other is cancer drug. Neither the patients nor the physicians know what medication the individual has received. After two years, the results of treatment must be considered.

    If results are positive, it may mean that the cancer drug can apply to be approved by the Norwegian Medicines Agency and similar agencies abroad.

    - Because of the cost will not get any medication widespread without such approval. I hope this study can lead to medication may be available to more patients, says Mella.

    - Incomplete answers

    The Ministry of Health has also allocated money to the four health regions to participate in the study.

    - This is a big problem for many people in our country. It is also one of the areas where health care is incomplete responses both in terms of disease origins and effective treatment. Then we must go the way of important knowledge, says Minister.

    ME researchers and treating physicians have responded that this research has not received money from the government. Research from Bergen has been known for several years.

    - There have been allocated money from the Norwegian government for this type of research even earlier. It is also important that the Research Council considering this professional and I am glad that this is now clear off the ground.

    Research hope appropriation may be the final step towards the treatment of ME patients.

    - This is a disease that has not managed to get an overview of the causes. The special feature of this application is that you have found a drug that has shown promise for the treatment of some patients. It's great if it turns out that this is right, says Department of Health and Society, Jesper Simonsen, the Research Council.
     
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  13. natasa778

    natasa778 Senior Member

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    Popping the champagne for the Feast of Rituximab!
     
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  14. snowathlete

    snowathlete

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    such good news, and Maria Gjerpe you have done a fantastic job achieving this. Sure, people have helped, but you've led it and I'm sure you have earnt a rest now!...nonetheless, I hope we can find a way to enable you to continue running campaigns like this in the future, because you are such an asset to the community.

    Bolters! :balloons:
     
    Blue, Sasha, Valentijn and 2 others like this.
  15. Christine

    Christine

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    Isn't this wonderful news?!

    A big thank you to Maria for a hugely successful and inspiring campaign! The MEandYou crowdfunding effort has been bold, clever, and effective.

    This gives the M.E. community reason to hope. Our community is on the verge of a confirmation study that, if successful, would send a big statement to all corners of medicine. Just think what it would mean to have a large % of these 140 patients with M.E. respond to a cancer drug!

    Many of us have been praying daily that God would provide the money some way, somehow, throughout this 90-day MEandYou campaign and here we are almost exactly on day 90…and can you believe it?!, we can now celebrate that the necessary funds are here to begin this important scientific study!

    It has been a pleasure to meet people around the world through this campaign as we have labored together to raise money and build awareness to end this suffering!

    Your friends,
    Tom and Christine Jarrett
    on behalf of the «Jesus cares about M.E. and You» campaign team in the USA
     
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  16. Christine

    Christine

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    I nominate this news as Front Page article material.

    It would probably encourage many people here to know the news of an imminent Phase 3 clinical trial (finally, a clinical trial!) along with the encouraging story about how the funding came together in such a broad spectrum of support.
     
  17. urbantravels

    urbantravels disjecta membra

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    There will be a Bolus of Patients lined up to enter the Feast of Rituximab!!

    ("Bolus of patients" is from a quote by a pharma industry analyst about some new treatment - I forget for what, it sure wasn't ME/CFS - saying that there was a lot of pent-up demand for the treatment, so patients would be eager to try it. Only he called these eagerly waiting patients a "bolus.")
     
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  18. Bob

    Bob

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    Wonderful news!!! Congratulations to everyone, as this turned into such a huge international community effort. But special thanks to Maria, who is responsible for so much international publicity, which I'm certain made a big difference in Norway, by keeping the pressure on the authorities. And many thanks to Maria for your amazing fundraising work. You've done such an amazing job Maria! You really have. Thank you.

    :balloons: :thumbsup: :balloons: :thumbsup: :balloons:
     
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  19. Bob

    Bob

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    This is a translation error...
    It means 10 million Norwegian Krone (NOK), which is about £1,100,000 and $1,700,000


    And another interesting translation...
    Hopefully, before long, we'll all be 'feasting' on Rituximab! :)



    http://translate.google.com/translate?hl=en&sl=no&u=http://www.vg.no/helse/artikkel.php?artid=10117089
     
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  20. Purple

    Purple Bundle of purpliness

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    Google Translate often translates numbers and currencies incorrectly - best to look at context and/or isolate the bit that's unclear and translate each word/group of words separately.

    The translation also says
    "Author Hans Olav Lahlum gave 5,000 million in funding for the same research after he participated in the world's longest interview on VGTV."

    This was NOK5,000 :) I think.
     
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