Article: Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope

Article: Treatment Breakthrough and Paradigm Shift For CFS?: Rituximab Trial Works!

You can view the page at http://forums.phoenixrising.me/content.php?496-Treatment-Breakthrough-Paradigm-Shift-CFS-ME-Rituximab-Trial-Works-ME-CFS

 

I wonder what Dr. Chia thinks. He uses the herb oxymatrine to treat subgroups of patients, but warns that if the patient has a family history of autoimmune disease that it might not be a good option. The herb has been known to trigger autoimmune reactions. This highlights the possibility that just because patients have core symptoms in common it doesn't necessarily mean that the same treatment will work for everyone.

 

Well my family does not have a history of autoimmune disease. Some suspicion from prostrate cancer (it's cause - viral - passed to my generation may hold a key). This is the best breakthrough for ME ever, a complete health breakdown - why - and researchers are on the way;

 

I wonder what Dr. Chia thinks. He uses the herb oxymatrine to treat subgroups of patients, but warns that if the patient has a family history of autoimmune disease that it might not be a good option. The herb has been known to trigger autoimmune reactions. This highlights the possibility that just because patients have core symptoms in common it doesn't necessarily mean that the same treatment will work for everyone.

That's a really interesting point....Could you start to determine what percentage of patients have an autoimmunity by looking at who doesn't do well with oxymatrine??? or other immune stimulants? The more I learn about autoimmunity the more complex it is though. There are different kinds of autoimmune disorders and things that work for one will wipe out people with others.

I have heard of 2 people with CFS who tried Rituximab and had bad results.....On the other hand Dr. Bateman noted that she has also seen people with CFS get better while they were on chemotherapy.

 

I'm really looking forward to Montoya finally publishing his PCDBT on Valcyte, which he outlined in his widely circulated talk in March, 2011 so that you can get over comments like the one above. The first three patients in the early Rituximab trial were wildly successful compared to the latest Rituximab study. The two "CFS" patients that responded to the placebo in the Rituximab study apparently did not meet the Canadian Consensus Dx (CCD) criteria in a dost hoc analyses. Rituximab may be a huge clue as to an underlying mechanism in a SUBSET but 33% of patients had no response and all but two eventually relapsed. There are going to be a lot of questions about subsets and I believe that organizations hanging on to anything less than the CCD criteria are going to be revealed as having impeded progress out of a misguided fear of leaving anyone out.

Everyone is noise when their data is included in somebody else's cohort!

Montoya on Rituximab:

I agree about the need to get the 'noise' down and Rituximab might just be the drug to do it - splitting ME/CFS into those who respond and those who do not. I also imagine, as you noted, that the rate of positives will go down as more heterogeneous studies are done. Maes said he has data indicating that about 30% of people with CFS have a ve strong auto-immune condition and the rest do not. I wouldn't be surprised if it ends somewhere around there...which would be a huge win.

Unless they can find a way to get more long lasting results my guess is that Rituximab, given its expense, will be more important for what it points to than the drug itself. The finding that some sort of auto-immune reaction is present in a subset of CFS patients, if its validated, has the much the same potential as XMRV to redefine the illness. The fact that it was 60% (as opposed to the upper 90% as the WPI felt as some point) is in its own way encouraging - since its hard to imagine that any one factor will be determinative for all patient.s

 

Drug companies unlikely to pursue trials for drugs with a "low" success rate

I agree about the need to get the 'noise' down and Rituximab might just be the drug to do it - splitting ME/CFS into those who respond and those who do not. I also imagine, as you noted, that the rate of positives will go down as more heterogeneous studies are done. Maes said he has data indicating that about 30% of people with CFS have a ve strong auto-immune condition and the rest do not. I wouldn't be surprised if it ends somewhere around there...which would be a huge win.

Unless they can find a way to get more long lasting results my guess is that Rituximab, given its expense, will be more important for what it points to than the drug itself. The finding that some sort of auto-immune reaction is present in a subset of CFS patients, if its validated, has the much the same potential as XMRV to redefine the illness. The fact that it was 60% (as opposed to the upper 90% as the WPI felt as some point) is in its own way encouraging - since its hard to imagine that any one factor will be determinative for all patient.s

An issue that is rarely addressed is whether drug companies are interested in exploring treatments that appear to only work on a small percentage of patients. I think Ampligen works for about 15 % of patients and lets say Rituximab works for 30% of patients. For big companies that's not enough. Obviously, as Ian Lipkin noted in his WPI talk, in terms of advocacy patients need to stick together rather than splintering apart. But, in terms of effective treatment scientists must subset. Figuring out why only subsets of patients respond to certain treatments will go a long way toward figuring out the various disease mechanisms at play. Plus, if you define subsets accurately then in one sense, the treatment rate goes up.

 

I'm not sure that is true--that drug companies won't work to market a drug without a high success rate. A lot of drugs they have marketed do not work well for everyone--anti-depressants, ED drugs--to name some of the big sellers. Also they refer to their own positive studies only, and omit the negative ones, which they are allowed to do, amazingly. When more objective outcomes are noted years later, it turns out these drugs didn't work nearly as well as touted.

 

similar to antibiotics, if you make a person very toxic then the appearance of improvement via less microbes etc can appear significant, however the very treatment itself will stop them crossing the finishing line and the affects of long term high toxicity, which is what will happen like with abx because folk think their improving, is potentially harmfull to their condition and could create extra symptons/illnesses. stuff like this is scary because it may eventually be foisted on people who don't wish to take this course but may be encouraged/pushed to do so due to trial "results". why don't they completely recover?

 

hoMEy, I agree that sometimes we are overdosed with antibiotics, as with other drugs and treatments. We are floundering in the wilderness, it could be said, waging our own experimental wars or venturing on exploratory expeditions. I am very grateful for this forum where we try to share information and help each other with this struggle. It is fun to be in this with "you guys". Well, we just have to keep going!