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Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

B

Battery Muncher

Senior Member
Messages
620
Mark said:
Actually I don't think the suggestion that Dr Mikovits is responsible for the Rituximab connection has much weight behind it - I'm not aware of any evidence supporting that suggestion. From what I've gathered, I think the Norwegian study began before the publication of Lombardi et al in 2009, and the original spark for the Norwegian research was about 3 years ago, if I remember correctly. The Norwegian results have been quite widely known - though very much under wraps - for about 6 months now, and it's possible that the promising trial results were known to some researchers within the ME/CFS research community even before that.

There is an interesting connection with Dr Mikovits' research though: I may misremember some of the details, but Currer has posted on this forum a link to a paper from Mikovits et al, 2010, concerning XMRV expression in those same CD20 cells that Rituximab targets. Hopefully someone will add the details here. It does seem quite interesting if Dr Mikovits was investigating XMRV in CD20 specifically, though whether that is suggestive of a valid link, advance knowledge of the Norwegian progress, or common reasons to be interested in CD20, I'm afraid I don't know. I'm also curious to recall the specific details of what IrsiCaixa in Spain reported, again concerning XMRV expression in antibodies I think...again, perhaps someone has the details to hand?
Click to expand...

Good post. Just to add to this - at the start of this thread, wasn't it mentioned that Mikovits was present when Mella and Fluge first presented their results? Surely she would have spoken out if she felt her research was stolen.

I'm afraid that I don't know anything re IrsiCaixa.
 
redo

redo

Senior Member
Messages
874
Yes, of course it's not "stolen". Fluge and Mella had their first patient on Rituximab over four years ago. Than they applied for ethics approval for the three patient case study sometime in 2007. The patients than was on Rituximab and obervation. One for over 1.5 years. Than they wrote the text for the case study. Than the sent it for publication, and it was received in May 2009. Than, almost a half year after that occurred, the XMRV study got published.
 
B

barbc56

Senior Member
Messages
3,657
I have heard about cancer/me/cfs patients feeling better after chemotherapy for years. All anecdotal/hearsay reports, of course. It will be interesting to see how this plays out.

What ever happened to the research at George Washington University about proteins in the spinal fluid of PWMECFS? I was going to participate in that study but guess what. Didn't have the energy to participate.

I can't think of the Doctor's name but will look for it and post it later. I do know he was at one of the important conferences. If I find my brain, that is. :>)
 
C

currer

Senior Member
Messages
1,409
http://www.retrovirology.com/content/8/S1/A230

Hi Mark.

The above link is the paper you are interested in where Mikovits and Ruscetti look at the CD20 B cells and find XMRV in them.

I agree that the rituximab studies were planned quite independently of Dr Mikovits research, however she could be credited with helping to change the political stance on ME, as she did go over to Norway at a time when her XMRV research was getting massive publicity.

This, by itself, would make the Norwegians aware of the ME problem.

We have to be grateful to Dr Mikovits for always being a wholehearted advocate for people with ME and raising awareness of the severity of this disorder and the need for proper treatment and care. This would have been well publicised while she was in Norway.

I think it was pure chance that these researchers, acting independently of each other, both came to focus their attention on these immune cells.

But the co-incidence is significant.
 
C

currer

Senior Member
Messages
1,409
Well remembered Mark.

Here is the Irsi Caixa paper, and yes, they found XMRV in the B cells again.

I think I must have missed this paper, I have no memory of reading it before.

http://xmrv.blogspot.com/2010/09/irsi-caixa-finds-xmrv-in-spain.html
http://forums.phoenixrising.me/show...-Spanish-XMRV-studies&highlight=spanish+study
Did this paper ever get published? Or was it presented only as a poster at the XMRV conference? can anyone remember or find out?
Why do these papers not get published?

There is also another paper at the above link by Curriu which discusses the immune abnormalities and dysfunction in ME which ties in with the paper fron Mikovits and Lombardi on the distinct inflammatory signature in XMRV infection.
 
B

Battery Muncher

Senior Member
Messages
620
currer said:
http://www.retrovirology.com/content/8/S1/A230

Hi Mark.

The above link is the paper you are interested in where Mikovits and Ruscetti look at the CD20 B cells and find XMRV in them.

I agree that the rituximab studies were planned quite independently of Dr Mikovits research, however she could be credited with helping to change the political stance on ME, as she did go over to Norway at a time when her XMRV research was getting massive publicity.

This, by itself, would make the Norwegians aware of the ME problem.

We have to be grateful to Dr Mikovits for always being a wholehearted advocate for people with ME and raising awareness of the severity of this disorder and the need for proper treatment and care. This would have been well publicised while she was in Norway.

I think it was pure chance that these researchers, acting independently of each other, both came to focus their attention on these immune cells.

But the co-incidence is significant.
Click to expand...

True. When we have someone who works as hard for the ME/CFS community as Mikovits, we should always be grateful.
 
shannah

shannah

Senior Member
Messages
1,429
The ME/CFS study by Mella and Fluge is a key study for our field


Professor Nancy Klimas, MD, is director at the ME/CFS and Gulf War Illness Research Center as well as Professor of Medicine at University of Miami Miller School of Medicine. She has expressed the following about the ME/CFS study that was recently published:

The recent study of Drs. ystein Fluge and Olav Mella demonstrating significant improvement in ME/CFS patients treated with the B cell depleting agent Rituximab is a key study for our field.

By showing that depleting B cells can cause dramatic improvement, the investigators point the field in the direction of autoimmunity, and autoimmunity caused by an autoantibody. However, there is one other plausible explanation: that the B cells were acting as a reservoir of infection and by depleting the B cell line the viral load can be brought down to the point of suppression by the immune system. Because EBV infection is harbored by B cells, as are several other putative latent viruses that could contribute to illness persistence, I believe both of these theories deserve vigorous scientific pursuit.

Many clinicians fail to realize the severity of the illness that has been termed ME/CFS. This is a profoundly ill population, the severity of illness scores are similar to congestive heart failure and severe rheumatic disorders such as rheumatoid arthritis. If a medication like Rituximab is found to be effective in validation studies, the risk/benefit ratio would justify its use in very ill ME/CFS patients.

http://bergento.no/the-mecfs-study-by-mella-and-fluge-is-a-key-study-for-our-field/
 
Tia

Tia

Senior Member
Messages
247
​
Mark said:
Actually I don't think the suggestion that Dr Mikovits is responsible for the Rituximab connection has much weight behind it - I'm not aware of any evidence supporting that suggestion. From what I've gathered, I think the Norwegian study began before the publication of Lombardi et al in 2009, and the original spark for the Norwegian research was about 3 years ago, if I remember correctly. The Norwegian results have been quite widely known - though very much under wraps - for about 6 months now, and it's possible that the promising trial results were known to some researchers within the ME/CFS research community even before that.

There is an interesting connection with Dr Mikovits' research though: I may misremember some of the details, but Currer has posted on this forum a link to a paper from Mikovits et al, 2010, concerning XMRV expression in those same CD20 cells that Rituximab targets. Hopefully someone will add the details here. It does seem quite interesting if Dr Mikovits was investigating XMRV in CD20 specifically, though whether that is suggestive of a valid link, advance knowledge of the Norwegian progress, or common reasons to be interested in CD20, I'm afraid I don't know. I'm also curious to recall the specific details of what IrsiCaixa in Spain reported, again concerning XMRV expression in antibodies I think...again, perhaps someone has the details to hand?
Click to expand...

Aaaahaa! You know, you hit the nail on that one because that girl Elena, who was part of the Norweigan study, she has been well for three years now, since 2008 in fact so maybe that's where Mikovitz got the fact from then? Interesting..

Ps: And good for us that Elena's stil well..;):D
 
shannah

shannah

Senior Member
Messages
1,429
ME/CFS Alert #12

Llewellyn King interviews Torsten Potwol on the Norwegian Therapy

Excerpt from shortly after the 5:00 minute mark:
?"they (the Norwegian treating oncologists) claim that these patients (with ME/CFS) are really affected as severely as late stage cancer patients and I think that is something that has not been fully understood by society."

http://www.youtube.com/user/MECFSAlert#p/u/0/Cv1naaJ4cVY
 
Timaca

Timaca

Senior Member
Messages
792
Here's the full article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936947/pdf/keq159.pdf

I liked this paragraph: on p.1912, just above "Materials and methods": "Our finding clearly show that RA patients having EBV replication at baseline, not only cleared their EBV load, but responded significantly better to the RTX treatment and presented a longer lasting response than patients who do not have EBV replication in the bone marrow.

I honestly think that within CFS there are subsets of patients who have one or more pathogen making them sick. I'm guessing that Elene got well because the rituximab got rid of her chronic EBV infection: http://bergento.no/?page_id=3242&preview=true

But, rituximab doesn't work on all infections that may be behind CFS. So, not everyone gets the same amount of benefit from the drug. It is very exciting to me to see these articles.....

Best, Timaca
 
fla

fla

Senior Member
Messages
234
Location
Montreal, Canada
Can we expect to see M.E. patients travelling to other countries to get experimental rituximab treatments just like M.S. patients use medical tourism to get experimental stents inserted into their neck veins?
 
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