New Paper - Gammaretroviruses - Maureen Hanson, David Bell

[asleep]

I think the people who are still so desperately hanging on to the theory that xmrv is harmful, are hindering other theories. Yes, and I have said this before ,even looking for other RVs or viruses is important but the latter should at this point way down the list of priorities. If this were some other issue it would have been discarded by now. So my opinion goes beyond the philosophical.

Honestly, there seems to be far more "desperation" from the handful of people who, without fail, show up to every single XMRV conversation to smother curiosity and derail the exchange of ideas with heavily value- and bias-laden proclamations. Of course everyone is allowed their opinions and entitled to present whatever arguments and evidence they want, but there is a starkly qualitative difference between those engaged in genuine skepticism and those attempting to ride roughshod over the conversation with their agendas. It can be difficult to distinguish these in one-off instances, but over many iterations a rather clear picture emerges, as evidenced by more and more people following this research catching on to the truly bizarre and reflexive nature of these inevitable attempts to scuttle honest conversation. This constant haranguing and unremitting need to sow doubt, distrust, and confusion seems to be exclusive to XMRV discussions.

I also disagree with your claim that XMRV would have been discarded by now if it were any other issue. Off the top of my head, the only other research avenues that I can recall being fully discarded in ME are prior retroviral discoveries. In the world of ME research, it instead seems to be the case that the likelihood of an issue being discarded is positively correlated to its hypothetical explanatory power and inversely correlated to the strength of evidence for discarding it.

 

[currer]

I am surprised anyone with ME can quote approvingly from ERV who has admitted she knows little about our illness.

Saying "the immune system is involved" does not explain WHY autoimmune disorders are becoming more common.

Why the resistance to looking for root causes? If ME is an autoimmune disease - WHY?
All those months ago - that was why the WPI and MIkovits investigated the immune system IN THE FIRST PLACE - because it was clearly an immune system disorder. Cant you see the circular path you are reasoning in Barb, Mikovits hypothesis accounts for the abnormalities in the immune functioning. Instead of moving forwards this research is constantly redirected back on its own tracks.

I am interested in the retroviral research for iits own sake. I want to see it pursued fully. It does not detract from other research into the causes of ME. In fact "XMRV" has focused interest and money on our neglected disease. It is a false argument to imply that more or better research will be carried out once "XMRV" is forgotten.
No-one has looked into the blood markers in Dr Snyderman's case yet these clearly reveal responses to treatment that merit investigation. So where is this "better" research?

It would be worth investigating the role adjuvants have in disrupting the immune system as this is another plausible cause for this "autoimmune" disease. But it will not happen.

 

[Bob]

Saying "the immune system is involved" does not explain WHY autoimmune disorders are becoming more common.

Why the resistance to looking for root causes? If ME is an autoimmune disease - WHY?

I am interested in the retroviral research for iits own sake. I want to see it pursued fully. It does not detract from other research into the causes of ME. In fact "XMRV" has focused interest and money on our neglected disease. It is a false argument to imply that more or better research will be carried out once "XMRV" is forgotten.

Yes, XMRV has brought vastly more resources and interest into researching our disease. Even the CAA has acknowledged that, repeatedly.
And also, the XMRV research has stimulated further research paths, ideas and inspiration, in relation to the immune system, such as the WPI's cytokine study, and Lipkin's pathogen study.
I think XMRV has helped to create a virtuous circle in terms of research and funding.

 

[barbc56]

the handful of people who, without fail, show up to every single XMRV conversation to smother curiosity and derail the exchange of ideas with heavily value- and bias-laden proclamations.

I agree.

Barb C.

 

[ukxmrv]

I could write a whole thesis on why XMRV is a contaminant and shouldn't have to go over this once again. Read my previous posts. Look at what the major retrovirologist/scientest are saying. I am analyzing them critically and not just following blindly and agree with many. Yes, I even think ERV is a credible source despite her way of presenting information. The core of what she says is accurate, IMHO.

Barb,

In my opinion

Ayone could write a thesis on "why XMRV is a contaminent" but they would not necessarily be right if they looked at the bigger picture of MLV's

Dr Mikovits was stopped refering to XMRV only she tested the UK patients and found other MLV's

The theory that patients with ME and CFS could be infected with a retrovirus and that it could be a MLV is worthy of further investigations.

If you would like to produce a thesis on "why XMRV is a contamination" and at the time time all the other possible MLV's are as well I'd like to see it. Maybe just a paragraph or two of your major points instead - sticking to scientific facts and with references if needed. I think that what you will find though is that other patients will provide scientific facts to counter your arguments.

It's not desperate of me to want to this research continue. Obviously I've happy with any research that provides understanding of ME and treatment and cure. It's doesn't have to be a retrovirus. It doesn't matter what it is.

After my own discussions with doctors who have been researching CFS and ME for a long time plus researchers and scientists I am not alone in wanting retroviral possibilities explored and the MLV's (or whatever is being picked up by some researchers).

I'm not sure why you would see that as desperate. I'm also not sure why you it bother you to keep posting about something that you are not interested in. There is plenty of research that I think is a dead alley but I don't concentrate on that. The money doesn't all come from one pot. There is no reason why MLV and retroviral research cannot continue at the same time as other research.

I saw after the first retroviral saga how desperate some CFS patients were that an infectious cause was not found for the disease.

Maybe the question should be "are some patients desperate that it isn't a retrovirus" instead.

 

[natasa778]

I'm also not sure why you it bother you to keep posting about something that you are not interested in. There is plenty of research that I think is a dead alley but I don't concentrate on that....

Maybe the question should be "are some patients desperate that it isn't a retrovirus" instead.

Like

 

[Bob]

the handful of people who, without fail, show up to every single XMRV conversation to smother curiosity and derail the exchange of ideas with heavily value- and bias-laden proclamations.

I agree.

Barb C.

Yes, I have to agree with 'asleep'... It confounds me why ME patients who believe that XMRV is a dead-end persist on posting, energetically, and with motivation, about a subject that they don't think is leading anywhere. I know they have every right to, but it confounds me.

Surely there are other promising avenues of research that are worthy of attention, discussion, investigation, and support, such as the Rituximab research or what Bond University are doing.

I'm not interested in some subjects surrounding ME, such as some of the health supplement discussions, so I just don't go to those threads.

Barb, I honestly think it would be helpful if you read up on some of the history of ME, and you would see how XMRV has not diverted funds away from ME research, but has brought massive funds into it. And how XMRV has not meant that ME is taken less seriously, but has raised its profile, a hundred-fold, and brought loads of new funding, and new researchers into the field. In my opinion, XMRV has led to a transformation of the field over past two years.

Osler's web is good for a bit of background information.
Or feel free to ask questions, as some people here have been ill for a long time, and are aware of the history of ME, and the history of the politics.

 

[FancyMyBlood]

Jørgen Jelstad (who is visiting the InvestinME conference) just twittered that the Lipkin XMRV/MLV is done and will be released on June 30th.

 

[jace]

Yes, that news was in Peterson's speech. I've put some tweets and hashtags on the conference thread.

 

[Bob]

Jørgen Jelstad (who is visiting the InvestinME conference) just twittered that the Lipkin XMRV/MLV is done and will be released on June 30th.

Thanks for that.
He didn't happen to tweet what the results are did he?
That would save us a month of anticipation and speculation!

 

[jace]

Darn it, no. But without sight of the full paper, you can never tell anyway.

 

[FancyMyBlood]

Thanks for that.
He didn't happen to tweet what the results are did he?
That would save us a month of anticipation and speculation!

He didn't say anything about the results, but I I'm pretty sure it will be negative. I just hope everyone can finally leave this behind and concentrate on other things.

 

[Bob]

He didn't say anything about the results, but I I'm pretty sure it will be negative. I just hope everyone can finally leave this behind and concentrate on other things.

I suspect it will be negative as well.

But I don't understand what you mean about leaving it behind... Exploring XMRV has been highly productive, in my opinion... I think it's helped people think deeper about the immune system in ME patients... Far more productive than discussion and research into CBT.

 

[FancyMyBlood]

I suspect it will be negative as well.

But I don't understand what you mean about leaving it behind... Exploring XMRV has been highly productive, in my opinion... I think it's helped people think deeper about the immune system in ME patients... Far more productive than discussion and research into CBT.

Bob, I agree. XMRV is one of the best things that ever happened to ME/CFS research. It gained much publicity and attracked top scientists to an abandoned field, but the XMRV hypothesis itself is a dead unfortunately.

I believe we need to leave it behind and focus on new interesting research like the rituximab findings, immune abnormalities and autoimmunity in general.

 

[Bob]

Bob, I agree. XMRV is one of the best things that ever happened to ME/CFS research. It gained much publicity and attracked top scientists to an abandoned field, but the XMRV hypothesis itself is a dead unfortunately.

I believe we need to leave it behind and focus on new interesting research like the rituximab findings, immune abnormalities and autoimmunity in general.

I think the subject will quickly disappear into oblivion if the Lipkin study is negative. Especially if Judy has had access to next generation techniques. There will be a huge amount of interest, and possibly even some controversy, when the results are published, of course.

But there will still be unanswered questions, such as what exactly the antibody results indicated. And what is the source of the P-MLV sequences. And working out why their PCR results were inconsistent and unreliable. And looking at all the other diseases with which MLVs have been associated, such as breast cancer. I imagine that quite a number of retrovirologists will carry on researching MLVs, even if ME researchers don't.

 

[FancyMyBlood]

I think the subject will quickly disappear into oblivion if the Lipkin study is negative. Especially if Judy has had access to next generation techniques. There will be a huge amount of interest, and possibly even some controversy, when the results are published, of course.

Unfortunately I believe there will be a very minor part of the ME/CFS community that won't accept any research that goes against their bias. Fortunately, this is just a very minor part of the ME/CFS community.

But there will still be unanswered questions, such as what exactly the antibody results indicated. And what is the source of the P-MLV sequences. And working out why their PCR results were inconsistent and unreliable. And looking at all the other diseases with which MLVs have been associated, such as breast cancer. I imagine that quite a number of retrovirologists will carry on researching MLVs, even if ME researchers don't.

Agreed, but the unanswered questions won't matter for ME/CFS anymore. Assuming the antibody results are genuine it will turn out they're not ME/CFS specific (see the BWG results).

 

[acer2000]

Bob, I agree. XMRV is one of the best things that ever happened to ME/CFS research. It gained much publicity and attracked top scientists to an abandoned field, but the XMRV hypothesis itself is a dead unfortunately.

I believe we need to leave it behind and focus on new interesting research like the rituximab findings, immune abnormalities and autoimmunity in general.

I disagree. I don't think that studying the immune system (and potential autoimmunity) and pathogens such as XMRV need to be mutually exclusive. There are a lot of questions that have yet to be answered about both subjects and abandoning one in favor of the other is in my opinion shortsighted.

For instance: How does autoimmunity explain ME/CFS? How does it explain outbreaks and transmission between people which has been reported for years? How does it explain the common symptoms and signs of ME/CFS (PEM, NK cell abnormalities, T cell abnormalities)? Do these things respond to Rituxan as well, or do people just "feel better"? How does it explain Dr. Snyderman's response to ARVs? How does it explain the re-activation of other (mostly intracellular) pathogens?

Consider this: just because a drug that has been used "off label" for some "autoimmune" diseases seems to have an effect on ME/CFS symptoms doesn't mean that ME/CFS therefore must also be autoimmune. Thats a logical fallacy. In fact, we might as well also consider that ME/CFS is actually cancer because Rituximab was originally developed as a drug for cancer... Or that its actually HIV because Ampligen was originally tried for HIV... etc.. you see my point. Shouldn't we approach this finding with Rituxan with the same high burden of proof as we did other findings (HHV6, XMRV, etc.)?

Also, they were able to execute a study with Rituxan (which has lots of potential side effects - some of them fatal) and yet despite a lot of smoke about retroviruses and reports of response to ARVs, nobody has done a trial with them? Surely the side effect profile of ARVs is not bad compared to Rituxan. Certainly there are millions of people taking them, so the effects are well known. Perhaps XMRV proper isn't going to lead anywhere, but if we are trying Rituxan and getting a response (but we don't know why) we might as well try ARVs and see if we can get the same thing. Perhaps there is still something there lurking with a retrorvirus that could explain both phenomena. The results might be unexpected and interesting - and they could actually converge.

Even if you could explain all of this, "autoimmunity" does not occur in a vacuum. Its clearly triggered by something. So I really don't think looking at the immune system or "pathogens" separately is really an option. The goal should be to find a root cause and arrive at the simplest answer to the question. To do so, they need to look at the big picture and figure out how it all fits together. You can't do that by picking and choosing.

 

[FancyMyBlood]

I disagree. I don't think that studying the immune system (and potential autoimmunity) and pathogens such as XMRV need to be mutually exclusive. There are a lot of questions that have yet to be answered about both subjects and abandoning one in favor of the other is in my opinion shortsighted.

For instance: How does autoimmunity explain ME/CFS?

To me autoimmunity is the most elegant explanation. It would explain the autoantibodies found in ME/CFS, it would explain the female/male ratio, it would explain the improvement after rituximab administration and it would also somewhat unify the viral/toxin origin with the psychological origin. I believe both can trigger an autoimmune condition

How does it explain outbreaks and transmission between people which has been reported for years?

How does it explain the common symptoms and signs of ME/CFS (PEM, NK cell abnormalities, T cell abnormalities).

Very simple, different pathogens may cause immune dysregulation that ultimately may result in ME/CFS. Actually the autoimmune hypothesis makes the most sense in all these outbreaks. ME/CFS is associated with many different pathogens (EBV, HHV6, enteroviruses, Giardia) so there has to be a common pathway that leads to these symptoms. I believe Lipkin said the same in his WPI talk.

Do these things respond to Rituxan as well, or do people just "feel better"?

Mella and Fluge said today that all symptoms improved in rituximab responders. No effect on NK and T cells though, but I don't know what kind of testing they did.

How does it explain Dr. Snyderman's response to ARVs?

Obviously it could be all placebo, but Jay Levy said there is evidence ARVs 'calm down' the immune system. Also don't forget there are anecdotal reports that ARVs had no effect on symptom improvement.

How does it explain the re-activation of other (mostly intracellular) pathogens?

We don't know, but we also don't know if pathogen activation really plays a role in the majority of ME/CFS patients. Studies are very conflicting.

Consider this: just because a drug that has been used "off label" for some "autoimmune" diseases seems to have an effect on ME/CFS symptoms doesn't mean that ME/CFS therefore must also be autoimmune. Thats a logical fallacy. In fact, we might as well also consider that ME/CFS is actually cancer because Rituximab was originally developed as a drug for cancer... Or that its actually HIV because Ampligen was originally tried for HIV... etc.. you see my point. Shouldn't we approach this finding with Rituxan with the same high burden of proof as we did other findings (HHV6, XMRV, etc.)?

You're right that the Rituximab reponse doesn't prove that ME/CFS is an autoimmune condition, but it does suggest so. If it was a merely a viral condition with viruses 'hiding' in B-cells the response should be much sooner. The rituximab response combined with other evidence gives validity to the autoimmune hypothesis and it would be a shame if we didn't explore this further.

Also, they were able to execute a study with Rituxan (which has lots of potential side effects - some of them fatal) and yet despite a lot of smoke about retroviruses and reports of response to ARVs, nobody has done a trial with them? Surely the side effect profile of ARVs is not bad compared to Rituxan. Certainly there are millions of people taking them, so the effects are well known. Perhaps XMRV proper isn't going to lead anywhere, but if we are trying Rituxan and getting a response (but we don't know why) we might as well try ARVs and see if we can get the same thing. The results might be interesting - and they could actually converge.
Even if you could explain all of this, "autoimmunity" does not occur in a vacuum. Its clearly triggered by something. So I really don't think looking at the immune system or "pathogens" separately is really an option. The goal should be to find a root cause and arrive at the simplest answer to the question. To do so, they need to look at the big picture and figure out how it all fits together. You can't do that by picking and choosing.

I disagree. The safety profile of rituximab definetely doesn't compare to the daily horrors of ME/CFS and I have no doubt I'd take it as soon as it becomes available to me. Wether the side effect profile of ARVs is better compared to rituximab is irrelevant at this point in time. There is no evidence of retroviral involvement in ME/CFS so it makes no sense to do a trial.

 

[acer2000]

To me autoimmunity is the most elegant explanation. It would explain the autoantibodies found in ME/CFS, it would explain the female/male ratio, it would explain the improvement after rituximab administration and it would also somewhat unify the viral/toxin origin with the psychological origin. I believe both can trigger an autoimmune condition

Very simple, different pathogens may cause immune dysregulation that ultimately may result in ME/CFS. Actually the autoimmune hypothesis makes the most sense in all these outbreaks. ME/CFS is associated with many different pathogens (EBV, HHV6, enteroviruses, Giardia) so there has to be a common pathway that leads to these symptoms. I believe Lipkin said the same in his WPI talk.

Mella and Fluge said today that all symptoms improved in rituximab responders. No effect on NK and T cells though, but I don't know what kind of testing they did.

Obviously it could be all placebo, but Jay Levy said there is evidence ARVs 'calm down' the immune system. Also don't forget there are anecdotal reports that ARVs had no effect on symptom improvement.

We don't know, but we also don't know if pathogen activation really plays a role in the majority of ME/CFS patients. Studies are very conflicting.

You're right that the Rituximab reponse doesn't prove that ME/CFS is an autoimmune condition, but it does suggest so. If it was a merely a viral condition with viruses 'hiding' in B-cells the response should be much sooner. The rituximab response combined with other evidence gives validity to the autoimmune hypothesis and it would be a shame if we didn't explore this further.

I disagree. The safety profile of rituximab definetely doesn't compare to the daily horrors of ME/CFS and I have no doubt I'd take it as soon as it becomes available to me. Wether the side effect profile of ARVs is better compared to rituximab is irrelevant at this point in time. There is no evidence of retroviral involvement in ME/CFS so it makes no sense to do a trial.

While I 100% agree with you that the Rituxan thing need further study, I guess we will have to agree to disagree on these points about what some of these things mean. My main point in responding to the earlier comment was that we shouldn't look at the response to Rituxan (and possible autoimmunity) *or* the a pathogen causing ME/CFS in a vacuum. Both could be true, neither could be true, or one or the other could be true - and for reasons we don't yet understand. There are many scientists with different interests and background and they should be capable of simultaneously pursuing different theories until they find the cause.

Personally, I'm just concerned that *everything* get explained adequately and nervous that some currently unexplained phenomena in this illness that came to light during the XMRV study don't get passed over for the "theory of the moment". We should be looking to tie everything together.

 

[August59]

I believe the Lipkin study is going to be negative, but I also believe it is going to bring up a huge ? of some sorts. There will be a lingering unanswered question about the wide scope of the whole retrovirus detection or analysis and probably bring about another study. I don't believe contamination is going to answer all the positives and XMRV was not the only thing being seen and there might even be the mention of a mutation. I also think they will be testing a certain number of lab technicians looking for ???? who knows!