Norwegian rituximab study NOT started

Bob

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Now that the XMRV myth has been put to rest, patients with Chronic Fatigue Syndrome (CFS) are no longer jumping the gun to demand anti-retroviral treatments. But they are jumping the gun in new ways, based on very preliminary data coming out of Norway.
A correspondent in Norway wrote to tell me patients from Norway with myalgic encephalitis/chronic fatigue syndrome (ME/CFS) are travelling to the US to have Dr. Andreas Kogelnik in San Francisco treat them with IV infusions of rituximab, apparently to no avail. A course of treatment costs over $6000, not to speak of travel and other expenses.

The full article here: http://www.sciencebasedmedicine.org/index.php/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/
 
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Bob

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Bob

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The Norwegian Research Council is now meeting to decide next funding round.
Drs Fluge & Mella have again applied for funding for their Rituximab study.

The decision is expected to be published in a week's time.

MEandYou have posted info about it here (read below the second photo for English text):
http://www.meyou.no/forskningsradet-the-norwegian-research-council/

Fingers crossed!

As has always been promised, whatever happens with the research council, MEandYou have a promise and a contract to give all the donated money to the Haukeland hospital. (See their promise at the bottom of the webpage.)
 

Sasha

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As has always been promised, whatever happens with the research council, MEandYou have a promise and a contract to give all the donated money to the Haukeland hospital. (See their promise at the bottom of the webpage.)

I can't see the council funding more than they have to so if they do fund I'd expect it to be to cover the shortfall.
 

alex3619

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The thread title is still accurate, but the outlook is now much more certain. Funding from the Norwegian government! What we do not know yet is how much is being funded. This is a huge advance for ME research, and potentially the beginning of the end for doctors being unable to treat ME.

The next step, presuming the phase 3 trial is successful, is to campaign to get treatment out there for everyone who needs it. I doubt FDA approval or the TGA in Australia will be a big hurdle. While it could be argued that mere treatment is not necessarily cost effective, if this can be shown to be a cure then the cost effectiveness counter-arguments go out the window. Its much more expensive to have sick people than well people.
 
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Just attended a meeting where Doctor Fluge spoke last week at Stavanger University Hospital. They are moving forward and are preparing their paper for publishing. They where not able to give us all the details of the results of the study they have been conducting as that would make it more difficult to be published in pair reviewed journals, but there were clearly some interesting developements.

On a question from one of the audience members they did however suggest that non experimental treatment using Rituximab could become a reality in 3-4 years. I didn´t get the impression that they were "stuck" because of lack of funding in any way (of course funding is always a challenge but I guess they are able to work within the limits of what they have).
 

knackers323

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If the autoimmune hypothesis for cfs is correct. What other things are prescribed for autoimmune diseases?

Diet, prednisone. Immunosuppressants. What else?
 
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aimossy

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im really looking forward to the published results. I heard through my organisation that some studies being published early next year that will show more on autoimmune as well. only time will tell.
 

Sing

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If the autoimmune hypothesis for cfs is correct. What other things are prescribed for autoimmune diseases?

Diet, prednisone. Immunosuppressants. What else?
I wonder. The immune system is very complex and different things can be the matter with it. Most of us have an immunodeficiency of some kind, I think. Maybe some have an aspect of the immune system which is overactive, I don't know. Rituximab wipes out the B cells which have gotten programmed with inappropriate instructions, not because there are too many B cells or because they are overfunctioning, right? Both prednisone and immunosuppressants suggest to me that we have an overactive immune system in need of damping down, and that is not my understanding.

Hopefully someone who knows more about how the immune system works can reply....
 

heapsreal

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i still think many of us have some type of ongoing infections, maybe looks auto immune if one as intracellular infections or viruses/retroviruses intergrated into our DNA. I think dampening our whole immune system down with broad spectrum immune supressants like high dose prednisone at this stage sounds dangerous unless needed short term for some other illness and under the care of a good doc.

We know ritux works by depleting B cells but do we have an issue with our B cells?? or does depleting B cells do something else to our immune system eg maybe increases nk function??(just using that as an example, otherwise i have know idea).

Has anything been mentioned by the Norweigans on how ritux is working in cfs or what they think is actually going wrong in cfs people? Do they have any proof that B cells are actually defective in cfs or is depleting B cells help through some secondary mechanism??

Cant wait to hear more on how ritux actually works in cfs people?