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Norwegian rituximab study NOT started

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

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is not good. I wonder about US studies.

    <http://translate.google.com/transla...=X&ei=DNh4UNu0BaTe2QXqyYGoCA&ved=0CDsQ7gEwAA>
     
    ME patient: - We got hope, but now we face a wall of silence It is almost a year since the ME patients had hopes of a treatment. The researchers are ready to begin study but lacks money.

    It is nearly a year since news of the ME breakthrough at Haukeland University Hospital <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg> came.

    Cancer Doctors Fluge Øystein and Olav Mella has found what may be a possible treatment for ME and not least a possible explanation of what the disease actually is.

    See also: Norwegian breakthrough can solve CFS mystery <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg>

    This gave hope to the ME patients <http://translate.googleusercontent.....html&usg=ALkJrhjEL82yOLvWJa-u7UqihlojkawdhQ> across the country on a larger study that may include many more patients. It has not happened. - What does the Minister of Health? ME sufferers Petter Schjelderup (57) from Harstad was one of the subjects began to believe that he could get help. Health Minister Anne-Grete Strøm-Erichsen (AP) promised in October to follow the ME-breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ> .

    - We got hope, but now we face a wall of silence, says Schjelderup. What does the Minister for 10000-15000 seriously ill people Now calls Schjelderup action Strøm-Erichsen.

    Read also: Strøm-Erichsen promise to follow up on ME Breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ>

    - What does the Minister for 10000-15000 seriously ill people, he asks. Something happens, but lack of money Cancer Doctors Olav Mella and Øystein Fluge the past year had a huge influx of patients who wish to be included in their studies.

    After last year's breakthrough wanted the two doctors to get started with a so-called multi-center study in which more hospitals participate <http://translate.googleusercontent.....html&usg=ALkJrhjB_k-r7y73C1jowyIXDGhUEHgRxQ> , but there is no money yet.

    However, they have applied for funds from sources such as the Research Council.

    - If we get the funding we hope to get started on a new study. We anticipate approximately 140 patients, half of which will Rituximab and half saline, says Fluge the website of TV2

    The study would include maintenance, i.e. multiple infusions over time.

    See also: Missing eleven million of ME study <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w>

    In November of last year, the doctors two million to further research the health minister <http://translate.googleusercontent.....html&usg=ALkJrhh3VbpgMWgxJiWMT_2ALdjVe-C7wQ> , but still lacks a double-digit million amount before a multi-center trial <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w> to see the light of day.

    - This is a work they have done outside of his job at Haukeland University Hospital. We want to get the research continued in a slightly larger context, and to achieve that, we have allocated two million. Western Health will also use the money to continue this research, said Health Minister Anne-Grete Strøm-Erichsen to TV 2 in november.

    As time goes on ME patients waiting for help. Calls for speed in processing - I have had ME for 12 years. I'm tired, says Schjelderup the website of TV2

    - I calls for more speed in processing and more money for research. I am distressed that there are solutions, but nothing happens, says harstad people here.

    Read also: Elene (26) recovered from ME <http://translate.googleusercontent.....html&usg=ALkJrhgvSjJDgk-dEAN1ILrUKI7xhCOr-g>

    Schjelderup calls for information and assistance from the public.

    - We are told that there is no treatment, he said.

    Although he has tried most in an effort to stay healthy.

    - I was partly set antidepressants, but it's not helped, he said. Genetic study Despite the fact that there is no money for a multi-center study yet on the other things in Haukeland.

    Doctors jobs including in the laboratory to understand the disease better.

    - This work will hopefully give us a better understanding of the disease mechanisms, says Fluge the website of TV2

    Read also: Requires investigation of Norwegian ME treatment <http://translate.googleusercontent.....html&usg=ALkJrhj_SipNjQoFvJ3DVEDgonwMAKiNig>

    In addition, we perform a study in which doctors will look at those who are genetically predisposed to the disease. It has been shown in studies that there is an inherited predisposition to ME.

    - We are in the process of a genetic study in which we look at families with a clear accumulation of ME. Several such families have contacted our research group at the Cancer Department, said Fluge. - Keeps going crazy Schjelderup previously ran their own business with several employees. Today he is 100 percent disabled and living with daily pain.

    - I am going mad with pain, says Schjelderup.

    Also read: ME sufferers "Gunnar" was not believed - was admitted to a psychiatric <http://translate.googleusercontent.....html&usg=ALkJrhgqx8YQrJC0tQUxAEtvvlkjYSGMiw>

    - It's hopeless and the worst is that you do not see any solution, he says.

    Schjelderup says that he sees the disease as very disabling, but that he still considers himself lucky.

    - I is in any case not to bed all the time. I manage a few hours a day, but then it stops, he says to the website of TV2

    Thanks to Patricia Carter for posting this on mecfsforums
     
  2. Bob

    Bob

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    So it seems that Fluge and Mela already have some funding and have applied to the Research Council for the full funding for their Rituximab trial.

    And they are carrying out a genetic research study, looking at families with ME.

    I don't think it looks too bad. It all depends on whether their research grant application is awarded.
     
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    I find delays like this totally unacceptable. People are dying and living in misery. One of my best friends in Washington from when I was the volunteer lobbyist for us died just this year. I've been living with this curse of a disease for 42 years and my patience is about used up.
     
  4. dsdmom

    dsdmom Senior Member

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    I'm not sure what to make of this post. I was recently told that they have been performing ongoing studies and hope to publish early next year.
     
  5. Bob

    Bob

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    My understanding, based on what I've read about it previously, is that there is not a delay due to funding, because they aren't yet ready to start the Rituximab trial. So the preparations are currently ongoing, and not delayed.
    I think it's just a case of keeping pressure on the Norwegian government to stick to their promises.
     
    Tia and Valentijn like this.
  6. August59

    August59 Daughters High School Graduation

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    This nothing short of just a damn shame. The chance at a study that may bring an end to suffering of millions, but in the case it did not end up being a cure it could provide substantial clinical data in a manner for which we have never had before. SNAFU!!!
     
  7. maryb

    maryb iherb code TAK122

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    Is there anyway we can help to do this Bob?
     
  8. Bob

    Bob

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    Hi Mary,
    I'm afraid I've no idea.
    I suppose writing to their department of health might help.
    If they get letters from international patients, it might show them how important it is.
    I hadn't thought of it before, but it seems like quite a good idea.
    Bob
     
  9. Bob

    Bob

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  10. Enid

    Enid Senior Member

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    Battling for funding (like all) I hear from friends in Norway. Let's hope they get it.
     
    taniaaust1 likes this.
  11. maryb

    maryb iherb code TAK122

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    I seem to remember writing/e-mailing the Norwegian Dept of Health not long ago, think that may have been about something else though, anyone any sugestions.
     
  12. Snow Leopard

    Snow Leopard Senior Member

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    I'm not yet worried, so long as their research funding applications are currently under review... These things do take time.
     
  13. MishMash

    MishMash *****

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    It's like a kettle on the stove; if you stand and wait for it to boil it'll take forever. Frankly, just forgetting about the future Norwegian study is probably the best thing to do now. Because between now and when they come up with new results I'll bet there will be a new study, drug, compound relating ot CFS that grabs all our attention. I ignored the whole XMRV thing, and when it crashed at the end I was glad I didn't waste any high expectations on it (not that I'm a downer or anything..)
     
    PhoenixDown likes this.
  14. taniaaust1

    taniaaust1

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    I think I heard somewhere that they were asking for donations... so the study can go ahead.
     
  15. user9876

    user9876 Senior Member

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    I just came across this message in a comment from a journalist who has done a lot of reporting of the Rituximab trial. Its via google translate hence the confused text. But it seems like things are going as expected with some more exploritory work having been done prior to the trial design.




    Jørgen Jelstad
    October 2012 at. 7:58 am
    Thanks for the feedback, Andrew.
    Now, unfortunately, research funding is usually a tedious process, and researchers at Haukeland has said that the matter would wait to initiate a large study until they had more data from further follow-up studies (which now largely been completed).​
    They have now applied for funding through normal channels, ie Council, and a decision which will probably fall towards the end of November so I understood it.​
    Will the funds from there, then comes the study started. And since in the course of the past year has continued with new studies (both on Rituximab and causality - which will be published later), so they will have better starting point for designing the best new randomized, controlled trial (RCT) of Rituximab than if they had run off a large study immediately.
    So this is the trade-offs that must be made, and that unfortunately takes time.​
    But it happens a lot at Haukeland - it is important to know - it's not like they are now just sitting and waiting for the money.
    The research is ongoing, and it is also established contacts with international researchers.​
    Then you hope that the money also going to a new, bigger and better RCTs of Rituximab in ME / CFS patients.

    http://translate.google.com/transla...2/10/21/diagnoseforvirringen/&act=url&act=url
     
  16. Roy S

    Roy S former DC ME/CFS lobbyist

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    http://me-foreningen.com/meforeningen/?p=4172

    (translation from google chrome)

    ME Association will take responsibility if the government fails - launches fundraising for ME researchNorwegian ME Association | Monday 29 October 2012 | Comments Off
    Shortly launched a major fundraising campaign organized by the ME Association and telethon for Krone Scrolling Rituximab for research.

    What is Rituximab?We assume that anyone reading this knowsRituximab-study (or " Benefit from B-lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome A Double-Blind and Placebo-Controlled Study 'as it really units), which was published in October last year?

    There is an interesting story. Thurs curious oncologist at Haukeland Hospital wondered why a patient with CFS and cancer got rid of all CFS symptoms as a result of cancer treatment. Interest led initially to a small study, three patients were significantly improved by use of the immunomodulatory drug Rituximab. This led to the study - a study that showed that ca. 2/3 of patients experienced a significant improvement of a medication that knocked out parts of the immune system.

    This got a lot of attention here in Norway - and it got at least as much attention abroad. TV2 had wide coverage, and you understand how big this was, if you read Jørgen Jelstads blog post "How important is Haukeland study." Not least gave hope to the results of ME patients that they could get their lives back.

    The road from study to treatment, however long.

    before Rituximab, or other immunomodulatory medications may be used as treatment, there is a need for more, preferably larger studies to confirm the results from Haukeland study. This costs money! It has submitted an application to the Research Council of 9 million for such a study, but it is still uncertain as to what will be granted. The government allocated two million last year, and the research is also supported by the
    Kavli Foundation , but it is not nearly enough.

    Therefore fundraising. We want to ensure that Fluge Mella and shall continue to be curious, and to continue to carry out pioneering work in a field that is so important to us all.

    We think big, and it is much to be in place. The action shall be recorded and entered into the collection control. Electronic solutions for payment shall be in place. We are building a website for the campaign. In the weeks leading up to the formal launch of the campaign takes the intense work. Fortunately, we have in recent years updated and streamlined the ME Association's computer systems for payment and accounting, so that we can handle something like this. We also have a new website that we can use to disseminate information.

    We say we think big, and we'll go after large contributions. It does not mean that we despise the little ones! There will be room for everyone and everything that can help. We need people who can participate in workshops for website, facebook page, contact the media, and much more. If someone wants to make small, local "grassroots campaigns", we will arrange for it. We plan including a brochure that can be posted on the PDF, printed up and distributed.

    What if Rituximab study get money from the research council?Should it turn out that Rituximab study get money from the Research Council, the funds raised go to related studies. Haukeland study indicates namely that CFS may be an autoimmune disease, a disease in which the body's immune system attacks its own tissues. Rituximab is a medicine used to treat other autoimmune diseases, such as arthritis, and it works because it "turns out" the cells that attack the body's own cells.Rituximab study has charted a new course for the search for the cause of ME, and it will certainly be the ancestor of a number of new studies.


    The idea for such a fundraising came in the spring, but it has taken time to get the formalities in place. Now we are ready to launch! We hope that this will be an ongoing action, in line with the pink ribbon campaign, and that we have every year, the ME-12 days May be able to distribute funds for biomedical research into ME.

    Some useful links

    The complete article that was publish in PlosOne last October: "
    Benefit from B-lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome A Double-Blind and Placebo-Controlled Study "

     
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  17. Bob

    Bob

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    I don't know if this has been posted already, but it gives a bit of helpful background to the Norway Rituximab situation.
    It was written, and/or translated, in March 2012:

    http://www.investinme.org/InfoCentre-Library-NMEA-Newsletter-1203.htm

    What is Happening with the Research into ME and Rituximab?
    By Norwegian ME Association


    By Anette Gilje
    Secretary General, Norwegian ME Association

    Translated by
    Ellen V. Piro and Eva Stormorken
    Norwegian ME Association
    16th March 2012
     
    Enid likes this.
  18. snowathlete

    snowathlete

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    Id be interested in helping promote the norwegian effort to raise funds, and i expect others would to. Does anyone know if it has progressed at all?
     
    taniaaust1 likes this.
  19. Bob

    Bob

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    There seems to be a lack of up-to-date information. Maybe because of the language barrier.
    The Norwegian journalist, Jorgen Jelstad, or the Norwegian ME Association, might be the best people to contact.
    Or maybe try a google search, in Norwegian! :confused: ;)
     
  20. snowathlete

    snowathlete

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    thanks Bob. I tried to contact through the MA Association website but on submitting the message i got an error and i presume that the message didnt send. :rolleyes:
     

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