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

[redo]

Hi SOC, When reading up on MS type Auto Immunity ... its difference from say, Rheumatoid Auto immunity it the Auto Antibodies are found in the BRAIN/SPINAL fluids. Whereas Rheumatoid Auto antibodies are found in and around joint areas similar to Lupus.

MS Auto Immunity makes a better model when looking at an Auto Immune disorder in ME/CFS because of Neuro dysfunction. I've always thought since 2008 studies that there was an Auto Immune disorder in ME/CFS Via the HPA axis.

SOC though a bit dated knowledge on Auto Immune disorders its still a pretty good read and helps you understand the possible mechinism behind it in many mention AUTO IMMUNE disorders. http://www.ucl.ac.uk/~regfjxe/Arthritis.htm This article also Talks about treating Rheumatoid with Rituximab.

+1 for the link Gary. I can't help but think there are significant similarities between the syndromes. Diabetes (unknown cause), RA (unknown cause) and MS (unknown cause). All are reckoned to be autoimmune diseases. The same medicines help various of the conditions, such as Kineret working for RA and also for diabetes. And Rituximab working for MS (Hauser 2008, nemj) and also for RA. It's obvious that the autoimmunity something sparks have some overlap, since the drugs can help several of the (so different) groups. The one 64000 dollar question is what makes the autoimmunity remain in the patients; are there some microbal cause.

 

[Guido den Broeder]

If ME is an autoimmune disease, what cells are being attacked that would cause so many body systems to be affected?

Amyloid beta(A?), for one, according to Xu and Gaskin (1997).

 

[urbantravels]

Cort, could you please provide the link to where this interview appears on the PR site? I want to direct someone else to it, but not to the middle of this discussion.

 

[urbantravels]

Points of terminology: I believe that Rituximab is *not* itself a chemotherapy drug, but it is used in conjunction with chemotherapy agents.

 

[Snow Leopard]

Points of terminology: I believe that Rituximab is *not* itself a chemotherapy drug, but it is used in conjunction with chemotherapy agents.

It is considered a chemotherapy drug for B-Cell Lymphomas.

 

[Kaoru]

I found this paper very interesting.

http://www.ncf-net.org/pdf/AnticardiolipinAntibodies.pdf

I think the Norwegian paper mentioned they hadn't identified but where going to look for antibodies possibly causing ME/CFS symptoms. Could anticardiolipin antibodies be it? Wikipedia mentions they attack the mitochondrias (http://en.wikipedia.org/wiki/Anti-cardiolipin_antibodies) which of course are responsible for energy production. Also the paper found the antibodies in 95% of patients and when they review the literature they mention they are present in 23% of healthy people. If confirmed at least such a test could help diagnosis. They already mention that rituximab could be of benefit and this was 2 years ago. I don't think the Norwegian paper cites this one.

Those who are recently jumping on the autoimmunity and rituximab regarding ME/CFS bandwagon may now be interested in this paper discussing exactly this from a couple years ago. The National CFIDS Foundation is the most scientific & least political oriented group I have seen.

 

[redo]

Very well observed Kauro! The pilot study for Rituximab was published the same year, but whether they knew about it when publishing their own paper is hard to say without dates. It takes some months from sending it to print until it's published.

The wikipedia intro for ACA was really fascinating: "Anti-cardiolipin antibodies (ACA) are antibodies often directed against cardiolipin and found in several diseases including syphilis[1], antiphospholipid syndrome, livedoid vasculitis, vertebrobasilar insufficiency, Behet's syndrome[2], idiopathic spontaneous abortion,[3] and systemic lupus erythematosus(SLE)."

@Snowleapard. It's considered the chemotherapy which isn't chemotherapy :Retro wink: It's not really a chemo in any way, but some refer to it as that as it kills a certain type of cells in the body. Monoclonal antibody therapy is really called "targeted therapy" when used against cancers, and it's a lot more gentle than chemotherapy. Many, if not most, who use Rituximab experience little or no side effects after the infusion part is over width.

 

[Andrew]

The wikipedia intro for ACA was really fascinating: "Anti-cardiolipin antibodies (ACA) are antibodies often directed against cardiolipin and found in several diseases including syphilis[1], antiphospholipid syndrome, livedoid vasculitis, vertebrobasilar insufficiency, Behet's syndrome[2], idiopathic spontaneous abortion,[3] and systemic lupus erythematosus(SLE)."

I notice they say "idiopathic spontaneous abortion." If this means the same thing as miscarriage, an Australian outbreak was preceded by sheep having spontaneous abortions. Then the shepherds because ill. Then other people.

 

[jace]

hi Urbantravels, I'm not Cort by a long shot, but he's prob. asleep atm. Here's the link you asked for http://forums.phoenixrising.me/entry.php?698-A-Drug-for-ME-CFS-The-Rituximab-Story

 

[ramakentesh]

Retroviruses dont wax and wane in presentation. Autoimmune diseases nearly all do - Rh. arthritis, ankylosing spondylitis, MS as examples.
Secondly, just like autoimmune disease, CFS comes on after viral infection or other bodily stressors.
Thirdly, CFS patients are more likely than the general population to experience other autoimmune diseases.

I am not surprised by this study in any way. Ive thought this from the moment I contracted CFS/POTS/OI

 

[ramakentesh]

Autoantibodies to inositol were found in one study of a CFS cohort.

 

[Enid]

Interesting video from Norway in case it hasn't been seen. (click cc button for English subtitles).

http://www.youtube.com/watch?v=ZBCXKIRBQ-s

(all the funding in place for continuing research).

 

[redo]

Retroviruses dont wax and wane in presentation. Autoimmune diseases nearly all do - Rh. arthritis, ankylosing spondylitis, MS as examples.

Good points Ramakentesh! But the immune dysfunction a retrovirus might cause, can change rapidly. I think one of the questions as to understanding what's causing the symptoms of ME, is why does the PEM happen. And it's not just malaise, it's pretty much all symptoms which gets worse after exercise. I think the studies showing that cytokines can change in a totally different way in PWME (after exercise) is a clue. When some cytokines can act that way, perhaps also other immune parameters (such as other cytokines than those studied) also changes really differently with ME patients after exercise compared with healthy people...

http://www.ncbi.nlm.nih.gov/pubmed/20230500

 

[redo]

This is a small population sample in a clinical II trail with 3 patients showing improvement. This is a small study in a foreign country that will not probably not get any legs in way of media coverage until they complete their clinical III trials and expand the population group. The research still has to be reviewed and other labs would have to duplicate their results. There is serious side affects to Rituximab so it is a serious drug.

Eco

The study with 3 patients is from 2009, and it didn't get much media coverage. The study being discussed now is with 30 patients, half getting placebo and it's getting plenty of media coverage.

The research still has to be reviewed and other labs would have to duplicate their results.

I did like you suggested, and googled your nick, so being a fellow PWME, I say if we want it to happen sooner rather than later, it's up to us to make it happen. Get case studies going, funding and spark some interest (but of course do it in a good, well behaved way). I made a thread about it here.

Rituximab is being used for RA sufferers as we speak (moderately to severe RA which doesn't respond to TNF inhibitors and some more common RA drugs). It's much more gentle than it's reputation.

 

[urbantravels]

As the work on this class of drugs goes forward, we can also expect more targeted therapies - once the right targets are identified - that bring with them fewer unwanted side effects.

I don't know that "gentle" is the word I'd use about Rituximab - it definitely has a potentially serious side effect profile - but it is more targeted than "chemotherapy" drugs, which are more indiscriminate killers, more like poisons. That's the reason why Rituximab is technically not considered a "chemotherapy" agent. "Chemotherapy drug" is not just another way of saying "cancer drug"; not all cancer drugs are chemotherapy agents.

 

[redo]

more gentle than chemotherapy and gentle are two different things urbantravels :Retro wink: The same with the quote "More gentle than it's reputation". It's reputation is almost that of a chemo drug, but it's not. It's an antibody which attaches to the CD20 antigen, and can work for lots of autoimmune diseases. The side effects of the patients in the study are listed here. PWME really come quite well off it compared with side effects for other patient groups. Take oncological patients for example, when Rituximab is used for that it may cause things like a cytokine storm and other things, and the side effects profile is much worse.
http://www.plosone.org/article/slid...RI=info:doi/10.1371/journal.pone.0026358.t005

The biggest concern is really the PML risk (which is really small, but serious if it happens). Discussed in great lenght here: http://forums.phoenixrising.me/showthread.php?2621-Rituximab-a-Possible-XMRV-Treatment

 

[alex3619]

The biggest concern is really the PML risk (which is really small, but serious if it happens). Discussed in great lenght here: http://forums.phoenixrising.me/showthread.php?2621-Rituximab-a-Possible-XMRV-Treatment

Hi redo, the PML question was addressed in the Norwegian paper, in the discussion section I think. Every case where PML has occured the patient was on other drugs, including chemo. They think that there is no case where PML has occurred on Rituximab alone. That remains to be seen in CFS and ME though, which will probably require a phase 3 study. Given the extended phase 2 study has been quoted as finishing in 2013, I don't think we will see a phase 3 study finished until 2015. We have a long wait ahead, presuming they can find funding for a phase 3 trial.

Bye, Alex

 

[leela]

Pardon my scientific ignorance, but my general question is this:
If ME patients have already got low NK cells, and then they kill of a whole bunch of B cells with Rituxan,
what happens over the long term to the immune system?

And since it is frequently the herpes family of virus that appears to be infecting the B cells
(did I get that part right?) when they are active, what happens later, when the latent virus in the CNS pops back out to infect the
new B cells? More Rituxan?

I feel a little frightened of killing off a whole segment of a compromised immune system--although it's not lost on me that that segment is itself infected with something bad.

I like the sound of that new antiviral Cort was talking about that appears to be able to go straight to the CNS--which is where a lot of the nasty buglets we contend with like to hang out (herpes, spirochetes.) It seems it is a non-toxic yet much stronger version of Vistide. (but that's OT on this thread.)

I like that an expensive chemo drug is bringing attention to the ME dilemma. I think that's the only way to gain traction; but big pharma does not always have the best interests of patients in mind, and the view of the disorders/treatments can be myopic. Still I think the best part of this study is the validation and attention from Medical World, and might signal the end of an era of abuse, neglect, and demeaning.

 

[Tristen]

Good points Ramakentesh! But the immune dysfunction a retrovirus might cause, can change rapidly. I think one of the questions as to understanding what's causing the symptoms of ME, is why does the PEM happen. And it's not just malaise, it's pretty much all symptoms which gets worse after exercise. I think the studies showing that cytokines can change in a totally different way in PWME (after exercise) is a clue. When some cytokines can act that way, perhaps also other immune parameters (such as other cytokines than those studied) also changes really differently with ME patients after exercise compared with healthy people...

http://www.ncbi.nlm.nih.gov/pubmed/20230500

Immune suppressants have a dramatic effect on my PEM, allowing me to expand the stress limits significantly. Problem is obvious for long term use of such drugs.

 

[Tristen]

Retroviruses dont wax and wane in presentation. Autoimmune diseases nearly all do - Rh. arthritis, ankylosing spondylitis, MS as examples.
Secondly, just like autoimmune disease, CFS comes on after viral infection or other bodily stressors.
Thirdly, CFS patients are more likely than the general population to experience other autoimmune diseases.

I am not surprised by this study in any way. Ive thought this from the moment I contracted CFS/POTS/OI

Same here, maybe not from the start, but for several years now. Since realizing I get the most relief from these drugs.