Wednesday, October 19, 2011


The long-awaited Norwegian study on Rituximab and ME was finally published today. This story is here. This is a very big deal. It will be interesting if this is picked up by the mainstream media, and this reality will be a key to determining if ME has reached a higher level in the the consciousness of "Important People". Where are Amy Dockser Marcus and David Tuller when we need them, when there is a real thread or story to be followed? I mean it is not like they didn't know this was coming?

Many who had seen the presentation by the two Norwegian cancer researchers, Drs. Fluge and Mella, at the InvestinME conference in May in London, or had seen the subsequent DVD lecture, knew what was coming - and awaited the official publication with excitement. This is going to open up an entire potential new branch of investigation of ME as an autoimmune illness characterized by immune disregulations. This association, which needs further study, potentially puts ME a step closer to an acquired immune deficiency. Another door has been opened into research and treatment - but many new questions can now be asked.

These two Norwegian cancer researchers stumbled upon the association of Rituximab and ME by serendipity. However they immediately realized they had struck upon something interesting, and aggressively pursued a double-blind, placebo-controlled trial with thirty patients. While the trial was small, the results were impressive.

A larger trial is underway, and we can be assured that these two researchers will continue to pursue and investigate this treatment - even though it is a side-light to their main cancer work. Both these researchers give the impression of being extremely serious in their studies - and they make no false claims. They are both cautious and optimistic.

Other clinician/researchers will also pick up on this study and build on it. Further studies investigating treatment protocols, involving dosage and timing, with Rituximab or with upcoming drugs in this class will now also occur. A ball has started rolling here. Clinician/researchers in the United States and perhaps elsewhere will explore the use of Rituximab off-label in ME. Kogelnick in CA is rumored to be doing a trial with Rituximab. Peterson is known to have interest in this drug. One can imagine the WPI or the new Mount Sinai ME/CFS research and treatment center giving Rituximab a try.

The most interesting thing about Rituximab is that it is an existing drug that is heavily used world-wide. Rituximab is not without side effects, but future drugs in the same class promise to be more tolerable and safe.

Cort Johnson has written an excellent essay of Rituximab in December 2010 and I refer you to that here.


  1. Yes, Kogelnik is doing a trial with Rituxan and Valcyte.

  2. Just because Rituxan si sometimes used for autoimmune disease and according to this study has an impact on ME symptoms doesn't mean that ME has an autoimmune etiology. Saying this would sound just as silly as saying that cancer must be autoimmune if rituxan has an effect on it (it does).

    With ME/CFS how would one explain the outbreaks? It would be the first contagious auto-immune illness that I have heard of.

    Also, did this study use any objective entrance and outcome measures? Did NK cell function correlate with improvement? Did the usual ME elevated cytokines improve (IL-8, etc)? Did exercise tests and standardized cognitive test improve?

    Don't get me wrong, I am not down on this study. Its really cool. But it would be a tragedy to just declare CFS "autoimmune" and call it a day. They need to ask *why* rituxan seems to help and how.

  3. Hah - OK. Keep those poor ME patients away from trials with ARVs - drugs that are relatively benign, have known mechanisms, and have well known side effect profiles and long term effect data. But blast them with a cancer drug that knocks out half their immune system with little idea of what is even being targeted or no understanding of the long term effects? Interesting logic...

  4. This study supports the human gamma retroviruses hypothesis for ME/CFS as HGRVs infect B cells.

  5. The assays used in this study were optimised to VP62/XMRV and could not have detect a HGRV.

  6. It is not an acquired immune deficiency (the agenda pursued by Mikovits who calls ME "XMRV AIDS") but immune dysfunction. Rituximab actually works by attacking a section of the immune system which now appears to have been the cause of the problems. They do not treat AIDS, in which a virus attacks and weakens the immune system, this way: they go for the virus. However, when the Rituximab treatment stopped, the patients who initially responded (which was not all those judged to have ME or CFS) relapsed, so the treatment will have to be continuous (or at least, longer than a few weeks) to be effective in the long term.

  7. Dr Frank Ruscetti has also compared ME to AIDS, as has Dr Klimas and many other HIV doctors.

    A deficiency is generally a lack of something. A dysfunction is a malfunctioning, as of an organ or structure of the body.

    Both of those are true of ME and HIV/AIDS.

    Rituximab depletes B cells. It is incorrect to assume that B cells are the cause of the disease. You are jumpting to conclusions not supported by the limited evidence.

    If HGRVs are the cause of ME/CFS, Rituximab will not be a good treatment for the diseae and the viruses will not be erradicated as they will also be in certain tissue and organs. Over time the disease or other disesaes will return. Again it is your assumption that this has nothing to do with a virus.

    If the treatment is used long term and the cause is HGRVs, chances are without B cells the viruses will be much more able to cause harm. After all they are oncogenic. So long term use may very well be worse.

  8. I'm thinking it might be a very very good Idea to get the Norwegian team and Dr. Snyderman in the same room for a good long chat

  9. It is another serious immuno suppressant. Be very careful - know and read ALL the side effects of the fine print in case they catch up with you.

    The longer you are on it the more you will be vulnerable to viruses, infections and aspergillus fungus attacking you.

    Good luck

  10. Doesn't anyone reading have Amy Dockser Marcus' email address and can contact her about this story in case somehow she herself was not aware of it?

    edit: I have just sent her an email.

  11. I have a great doc that is open to all new research. I'll have to bring this to his attention in case he hasn't heard about it. He uses a combination of traditional medicine and alternative medicine. Wish I would have found him sooner!

  12. Guys this is an interesting and hopeful development but in perspective - a trial of ARVs would be much safer. This just shows the hypocrisy of the scientific establishment. They put HIV drugs, which are relatively safe, up on a pedestal and make excuses why a clinical trial can't be done in another suspected retroviral infection - yet they cheer clinical trials of cancer chemotherapy drugs that have significantly higher risk and unknown long term effects.

    Anyways, I look forward to seeing more data on this approach. They need to look at whether it is actually fixing the immune problems in CFS (NK cells, etc, or just improving symptoms by general immuno supression.

  13. I wrote to Amy Dockser Marcus and received the following reply as to why they are not covering this development: "Yes, I’m aware of the study but we do not typically cover phase 2, very small treatment studies. We will continue to follow the research as it continues. Best, Amy"

  14. (At the Beginning I apologize for my bad English). And then I keep thinking: if CFIDS is "just" an autoimmune disease, why became my partner sick too just after having safe sex with me? And why I became sick after having sex (1986) with that bastard who had became HIV+ two years earlier, without telling me? Well. It would be wonderful living without symptoms, no matter what kind of stuff were causing them. But I think we have to keep distance from people (at least sexualy) for while. I believe there's an easy contagious agent in me.

  15. Such great news!! I would like to see at least a blogpost from Dockser-Marcus! Is she serious that this isn't big enuf news?