Rituximab, a Possible XMRV Treatment?

[acer2000]

Its encouraging that a drug used for cancer and other "autoimmune" diseases has a positive effect on our illness. However, I'd be very careful assuming that this means out illness is "autoimmune". Thats a very ill defined and slippery slope to go down. It seams that many times, scientists who can't figure out an obvious cause for an illness that involves immune activation will deem it "autoimmune" and then call it a day and stop looking for the actual cause. That would be a huge blow to ME/CFS research as there is much evidence that our illness is actually an infectious disease - cluster outbreaks, family members getting sick at the same time, people becoming ill following blood transfusion, etc... In other words, the epidemiological history of ME/CFS does not lend itself to an autoimmune pattern.

Not to mention that Rituximab basically obliterates the B cells, which while reducing symptoms, might not be such a good thing in the long run. I'm sure some of us would feel better on prednisone as well because it knocks back the immune response. But you better be sure the immune system isn't actually doing something useful (like battling a chronic infection) before you try that.

 

[liquid sky]

It may be that B cells are where the virus lives. Judy and others have thought this may be the case. I agree they need to keep looking for the infectious agent. I'm still looking for a retroviral cause. I think HGRV's may be the cause of a lot of what we call "autoimmune" diseases at present.

 

[Hope123]

Its encouraging that a drug used for cancer and other "autoimmune" diseases has a positive effect on our illness. However, I'd be very careful assuming that this means out illness is "autoimmune". Thats a very ill defined and slippery slope to go down. It seams that many times, scientists who can't figure out an obvious cause for an illness that involves immune activation will deem it "autoimmune" and then call it a day and stop looking for the actual cause. That would be a huge blow to ME/CFS research as there is much evidence that our illness is actually an infectious disease - cluster outbreaks, family members getting sick at the same time, people becoming ill following blood transfusion, etc... In other words, the epidemiological history of ME/CFS does not lend itself to an autoimmune pattern.

Not to mention that Rituximab basically obliterates the B cells, which while reducing symptoms, might not be such a good thing in the long run. I'm sure some of us would feel better on prednisone as well because it knocks back the immune response. But you better be sure the immune system isn't actually doing something useful (like battling a chronic infection) before you try that.

I agree with the concerns about using an immunosuppressive drug.

In addition, I read a blurb somewhere (can't recall now) that Mella's group presented at Invest in ME this year and my impression was that the results were not phenomenal although the blurb I read said they could not go into details until the work was published.

Anyone see them present at IiME or have the video to it and can give a summary?

 

[ukxmrv]

I saw the IiME presentation but they asked for it not to be discussed in public until published. They did say that they were recruiting for a new study as they had some ideas on length of treatment (or something like that). Sorry I don't know when it will be released.

 

[liquid sky]

That's one study I would really like to see. If anyone could pm me what they heard at the conference, I would appreciate it. Am able to get this drug, but would like to see if the results are good in the larger study. The first one was only 3 patients who all had a good reaction, but that's such a tiny study to draw inferences from.

 

[Snow Leopard]

I'm certainly looking forward to the paper.

 

[redo]

I'm certainly looking forward to the paper.

If you'd want, you could write a quick question to the scientist, asking which journal he submitted the paper to.

All you'd have to do is to is ask which journal it is. The scientists email address is here. I am sure he wouldn't mind at all.

http://forums.phoenixrising.me/show...XMRV-Treatment&p=186026&viewfull=1#post186026

The double-blinded, placebo controlled study of Rituximab is completed, the paper written and has been sent to a journal for publication (no word on its fate). The study was apparently successfu as he states
​

 

[fla]

I'm also looking forward to this paper being published since it looks likely that I'm in the subset with an autoimmune cause to ME/CFS. I mentioned this study to my neurologist who I'm seeing for POTS and his reaction was quite strong. He strongly stated that killing B cells is a highly risky treatment but that I should ask my immunologist what he thinks.

 

[redo]

I'm also looking forward to this paper being published since it looks likely that I'm in the subset with an autoimmune cause to ME/CFS. I mentioned this study to my neurologist who I'm seeing for POTS and his reaction was quite strong. He strongly stated that killing B cells is a highly risky treatment but that I should ask my immunologist what he thinks.

I'd like to see a risk assesment for doing nothing. Risk is probability that something would happen multiplied with consequence if it happens. If nothing is done, the probability that things would stay as terrible as they are is close to 100%, and the consequence of things staying like they are, are harsh if your symptoms are harsh.

When doctors do these risk assesments, it seems like they think the choice is between staying in the hunky-dory happy days (status quo) or doing this ohhhh so dangerous treatment.

 

[redo]

This thread is really a merged one. And the title of it is mine. The thought was: "we know Rituximab worked in 3/3 ME patients, could this be because it has wiped out a virus (of the B cells)". The thread has taken a different direction, so I am suggesting we rename it and move it to the "Antivirals, Antibiotics and Immune modulators" section.

Also, I think we'd need to discuss how to use the results for the best of the community. If the blinded study about to be published show a distinct and certain effect, how could we than use that to stop more CFS research money going into the black hole of psychiatric research? We need a strategy, and we need one of the ME organizations to contribute/push the "non-psycho" angle of this disease forward.

 

[ukxmrv]

When the paper is published it sounds as if they are going for a media splash in the UK. There was a request through the MEA here for patients to be interviewed by a PR company. The name of the study was not mentioned in the original request but speculation is that this is for the Norwegian Rituximab study.

The MEA asked for patients willing to be interviewed and they specified what kind of patients they wanted. It did sound as if the PR company had a strategy for how to publicise the study once it was published.

Only a guess and I could be wrong.

Dr Shepherd from the MEA is not part of the Medical Research Council group for CFS/ME now so he'll be aware of the findings. Be interested to see how the MEA spins the results of the study.

 

[currer]

Remember we are not to discuss the details of this paper until publication.

 

[ukxmrv]

Hopefully not too long away now. Currer. Be interesting to see if this is the same one as the PR request (which was on a public forum by the MEA).

 

[redo]

That's very important to stress currer. Agree. The last thing the authors would want would be to have data "floating around" showing this and that, and after peer review they'd have to made some adjustments. So, if anyone's an "insider" and knows about how the 30 patient, double blind, placebo controlled randomized study panned out, don't write about it.

There was a request through the MEA here for patients to be interviewed by a PR company.

If the study will be positive I think the US organizations should plan for something as well. CFS has a psychological stigma also in the US, and US research money is still being spend for the "mental illness and ME" stuff. A PR company sounds well. And as good would be to get some journalists or talented writers to push the non psycho story forward. Also, if this study is positive, I think feature stories/letter to the editor sent to the large newspapers would be a good idea, posing the question about whether it's right to spend tax payer money for dead end research like the "how is ME and anorexia similar" stuff.

 

[redo]

Good news for those who are worried about the PML aspect of the treatment. A casse report shows that it may be stopped with an antimalarial drug:
www.ncbi.nlm.nih.gov/pubmed/20562463

Here's some more info about stopping PML if it occurs. "CMX001 is also being touted as possibly the first effective drug able to treat progressive multifocal leukoencephalopathy (PML), a frequently fatal brain disease in immunodeficient patients, caused by the Polyomavirus JC." (hat tip, cort)

Chances for PML are anyways small, but it's good to have certain "outs" if it does happen.

 

[ukxmrv]

Right - it's been published finally

Redo, it does sound as if the ME Association are going to be supportive

(start)
"It's the most encouraging drug result so far in the history of this disease," according to Charles Shepherd, medical adviser to the UK ME Association. "Although it's a small trial, it's produced dramatic results


http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html

 

[Jemal]

The big question: is this disease truly autoimmune or are our B-cells infected by a certain virus, say a gammaretrovirus?
Knocking out the B cells might cause some new issues then... like cause cancer?

Anyway, it will be interesting to see if this study makes a splash in the media. It might be helpful to get the point across this is not all in our heads.

 

[LaurieM]

The Published Paper

The full published paper is now available:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358

 

[fla]

This significantly strengthens the argument that a subgroup of M.E. sufferers have an autoimmune disease as the NCF has been stating for years. It is a concern that other autoimmune diseases like psoriasis worsened through rituximab treatment as my family has a history of autoimmune diseases including serious ones like Walter Payton's disease. In richvank's videos he mentions worsening of some autoimmune diseases while on his protocol as well.

 

[acer2000]

This significantly strengthens the argument that a subgroup of M.E. sufferers have an autoimmune disease as the NCF has been stating for years. It is a concern that other autoimmune diseases like psoriasis worsened through rituximab treatment as my family has a history of autoimmune diseases including serious ones like Walter Payton's disease. In richvank's videos he mentions worsening of some autoimmune diseases while on his protocol as well.

While its encouraging that there appears to be a treatment that impacts the symptoms of ME/CFS - i don't think we can really draw any conclusions about it being an autoimmune illness. We don't know why rituxan works to change the symptoms in CFS - its a drug that was originally designed for cancer, then later used to some effect for some autoimmune illnesses. Just because it can work in some autoimmune illnesses doesn't mean that any illness it seems to have an effect on is by definition autoimmune.

Furthermore, current evidence of auto-antibodies in CFS is not conclusive, and the epidemiology of ME/CFS doesn't support appear to support an autoimmune etiology (cluster outbreaks, reported transmission between spouses or mother to child, ability to impact the disease with drugs that don't suppress the immune system, lack of response to typical immune suppressants like steroids, etc..) Most symptoms in infection are caused by immune activity, so it would be no surprise that someone with ongoing immune activity might *feel* better when taking a drug that knocks out half of their immune system. But I sure hope researchers don't just stop at that, but move on to ask the question of why rituxan might work in CFS, do some objective measurements of CFS markers (NK cells, cytokines, cognitive tests, exercise tests, etc..). Plus, what are the long term effects of knocking out all of your b-cells?

Anyways, encouraging start to a line of research that I think needs to be continued.