New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Olav Mella speaks about Rituximab and the future for ME patients

Discussion in 'Rituximab: News and Research' started by deleder2k, Jul 17, 2014.

  1. deleder2k

    deleder2k Senior Member

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    Olav Mella from Haukeland University Hospital in Norway speaks about the upcoming Rituximab study at the premiere for the film Perversely Dark 12.05.2014.

    http://www.syktmorkt.no/#!in-english/con6

    Unofficial subtitles by me. Feel free to comment.

    Remember to turn on subtitles.
     
    Last edited: Jul 17, 2014
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  2. Sasha

    Sasha Fine, thank you

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    That's great - what a lovely man! And thanks so much, @deleder2k, for doing English subtitles.

    I think he's right - we desperately need a medical specialism to adopt us. I wonder how close we are to getting that - he seemed to be saying that it depends on identifying the molecular mechanism involved.
     
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  3. OverTheHills

    OverTheHills

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    Thanks very much for posting and subtitling the video. Good to be kept informed. OTH
     
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  4. Cheshire

    Cheshire Senior Member

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  5. DanME

    DanME Senior Member

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    deleder2k, thank you so much for translating this fantastic speech!

    I must say, Fluge and Mella are my personal heroes (together with Maria Gjerpe, who started the crowd funding campaign for their current study and raised a lot of public attention).

    Their recent studies and constant effort to find a working treatment are a real game changer. Retuximab is the only treatment so far, which put some patients into complete remission. I cannot imagine, how much work they must have put into their research and their studies, especially confronted with the lack of medical and political attention.

    I especially liked, that he emphasized the absolute necessity to find the underlying mechanisms of the disease to get proper fundings and to be taken more seriously throughout the medical community.

    As well very nice to hear some criticism and disappointment in some of the medical community. He is totally right.
    A lot of doctors have prejudiced the disease and didn't to their job.

    All in all he seems very professional, dedicated and realistic.
     
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  6. Christopher

    Christopher Senior Member

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    They're using saline IV as a control? I hope it's not enough saline to alleviate OI symptoms...
     
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  7. Bob

    Bob

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    @deleder2k, thanku :thumbsup:

    Re Olav Mella, as @Sasha says, what a lovely man!
     
    Last edited: Jul 17, 2014
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  8. catly

    catly Senior Member

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    Thank you so much @deleder2k for keeping us up-to-date on the progress of this really important trial and for your translations into English. It helps to provide some hope for our future.

    I didn't realize Dr. Maella had personal connections to someone with the disease. He is right about the medical community failing us. Hopefully the study is a success and will help to move the field of medical acceptance, research and treatment for ME forward.
     
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  9. Bob

    Bob

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    It's a good point, but we knew this, already, and have discussed it elsewhere. Saline solution may have a transient effect on some symptoms but this is a long-term study that will measure long-term effects. Saline washes out of the system quickly so it's unlikely to affect the outcomes. Also I think rituximab is administered with a saline solution (?) in which case both groups will receive the same.
     
    Last edited: Jul 18, 2014
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  10. Firestormm

    Firestormm Guest

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    Many thanks indeed for the subtitles Jens. Very uplifting video :thumbsup:
     
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  11. rosie26

    rosie26 Senior Member

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    Absolutely Marvelous. Thanks. So impressed. It will be so good to have our own specialty eventually.
     
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  12. shahida

    shahida

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    I'd also like to say thanks to @deleder2k for all your hard work. It's interesting that only a few years ago (2011?) when asked by IiME to do a round table discussion to be filmed for their DVD he point blank refused, such was the very sensitive and risky political situation- he only agreed if it was not filmed. Now here he is chastising the medical profession in public! Quite a turn around- does his confidence indicate the political context for ME research is changing for the good? Only time will tell.
     
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  13. deleder2k

    deleder2k Senior Member

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    Thanks. I really appreciate it. There are two more videos. One from the author of the book "The Hidden" and a presentation from Katarina Lien at the ME/CFS centre at the Oslo University Hospital. The author talks about the history of ME and dr. Lien about the exercise test for ME/CFS (cycloergometer test). Not sure if I am able to translate them. Takes a a few hours to do the translation.

    Edit: Here is the story of me winded up as the most controversial disease of our time:

    http://forums.phoenixrising.me/inde...most-controversial-disease-of-our-time.31503/
     
    Last edited: Jul 18, 2014
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  14. Nielk

    Nielk

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    @deleder2k

    Your work on this is much appreciated!
     
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  15. NK17

    NK17 Senior Member

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    A big TAKK to @deleder2k for uploading, sharing and subtitling this video!
     
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  16. DanME

    DanME Senior Member

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    I would love to hear about the exercise test. I guess, we already know a lot about the history of the disease. Maybe you find some time to translate it one day. But I know, how exhausting translating is (especially, if you are not a professional).

    A couple of month ago Dr. Fluge and Maria Gjerpe gave an interview to a nationwide German radio station (Deutschlandfunk). They told the story of their first patient with lymphoma and ME and how Maria started her campaign. At one point Dr. Fluge asks her, if she is well. And she says, yes, just a little tired, because I worked 15 hours a day. And Dr. Fluge tells her, to be more careful. And I thought, 15 hours a day. Oh, my god. That is incredible. Thx to Retuximab.
     
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  17. deleder2k

    deleder2k Senior Member

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    Last edited: Jul 17, 2014
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  18. SDSue

    SDSue Southeast

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    Nicely done subtitles :thumbsup:
     
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  19. Kati

    Kati Patient in training

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    In order to have true blinded therapies, you need to inject same amount of same color ( in this case clear) fluid - usually the blinding occurs in drug prep pharmacies, in this case in hospital setting. In double blind randomized trials, physicians and patients are not aware of what is being infused to the patient. There is a drug reaction and infusion protocol.
     
    Last edited: Jul 18, 2014
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  20. aimossy

    aimossy Senior Member

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    That was great to see and thanks so much @deleder2k :) for keeping us in the loop.
     
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