Any news on Lipkin study?

[leela]

I'm for drawing a very clear, direct, brightly colored, impossible-to-miss line straight to All Better Now!

 

[Marg]

I'm for drawing a very clear, direct, brightly colored, impossible-to-miss line straight to All Better Now!

I will second that motion!

 

[CJB]

I always thought "draw a line under" was for emphasis thus the phrase "the bottom line". But then I also thought the Lipkin study was coming out on the 28th. I think this is the first time my fog has had a positive outcome.

Of course now I have to stop doing anything productive and find the phrase on the internet, etc., etc. etc.

I don't get out much, either.

Barb C.:>)

Now this has led me to wonder about the phrase "drawing a line in the sand" and how it's related to the above. Learning new things is a never ending battle.

Let us know! Many of us don't get out much.

I know the "bottom line" has to do with a balance sheet. The bottom line shows net profit. Which is why they say corporations are only interested in the bottom line.

 

[SOC]

So.... what are we all expecting from this publication? I don't really mean "Do we think they found a retrovirus or not". I'm thinking more along the lines of what are we thinking the impact of this publication will be on PWME, or what are the implications for us.

There have been great hopes pinned on publications in the past -- only to be dashed later. I suspect that some of those hopes weren't accounting for the slowness of scientific research and the crazy-slow transference of research conclusions to clinical treatments.

I'm not seeing any immediate change to our circumstances medically however this study turns out. If they do find that we have a retrovirus in common, it will probably be years and years before there's a antiretroviral approved for common use, although some of us will -- eventually -- get in some clinical studies. If they don't find any retrovirus in the majority of us, we're not in a very different place than we are now, medically.

I wonder if there will be significant social implications from the results of this study, though. If they don't find a retrovirus, I think we can bet that there will be an almost unbearable amount of gloating from certain fronts, to say nothing of stretching the conclusions beyond the data from our psychobabble friends.

However, if they do find a retrovirus in most of us, it could go a long way towards improving our public image (Now isn't that back-asswards?). A lot more people will believe we are "really sick" as opposed to malingering or suffering from some peculiar and unsubstantiated mental illness. That could go a long way towards making our lives a little easier I suppose.

While I'm looking forward to the results of this study, I can't say I'm expecting it to change much in my life in the short term. Obviously, finding a major infection would be a huge step in getting us where we want to be, which is wonderful, just not any kind of immediate gratification.

I'm thinking the more general study -- looking for all types of infection -- is more likely to give us more immediate results, so I'm a little more excited about that one, although if it comes up completely negative we will be so totally screwed even I may end up in a deep depression.

So... what is everybody else expecting from the publication of this study in another couple of weeks?

 

[urbantravels]

In terms of public perception, I think very much will depend on the way the information is released to the media. The exact wording of press releases, any quotes uttered on the record by Lipkin or other researchers, etc.

The spin could be either that this is the end of a string of failed research and that ME/CFS is "more mysterious than ever"...

...or it could segue into "In the time since the initial publication of the Science paper, many new clues have been gathered amid an atmosphere of renewed inquiry and interest by the scientific community. These findings include:" etc etc.

It could even make the point that the original XMRV findings have been a great impetus to catch the attention of scientists and propel new research in many areas. Which I think is definitely true, although you would never know it from most of the media coverage, which has decided that all stories about XMRV should make the Sad Trombone noise.

http://sadtrombone.com/

 

[August59]

Hi SOC - New treatments that fall in line with the objective this clinical trial could eventually be useful for us. Although I do need to read into it a lot more, but the title in itself is encouraging. Being able to target multiple viruses with one treatment would be a good thing as long as our bodies can handle this type of treatment. Hopefully the final product covers viruses that are determined to be the targets for us. I would expect EBV, CMV, HHV6 and others to be a target for reducing or eliminating them, but as these new studies come down the line there could quite possibly be another picture painted as to what is actually involved with our disease.

http://clinicaltrials.gov/show/NCT01570283

 

[Bob]

Good questions, SOC. I'm expecting Lipkin's XMRV study to be negative. And I think there will be a bit of a storm within the ME community for a while after the results are published. I'm sure that there will be some heated words from both sides of the debate. And, like you say, we will probably see some of the usual idiotic views about ME in the media and from the pschiatric lobby. And then, after a while, I'm expecting everything to quieten down, and to carry on as it has been recently. There really is loads of other very interesting research being carried out now, including the Rituximab research, so we do have other promising research to give us hope. I think we won't hear very much more about HGRV's now, for some time, except in low-key studies that continue to investigate the nature of XMRV-like viruses.

That's how I see it playing out, but I might be totally wrong, of course.

I hope that ME patients won't be hit too hard if the results are negative. I expect that some of our community will have pinned their hopes on Lipkin's study being positive. I mentally prepared myself for a negative result some time ago, as all indications seem to be that it will be negative. But I expect that some of us will be vulnerable to negative news.

Maybe it would be good for us all to take a moment to remember that some of our community might be hit hard by the results if they are negative.

 

[heapsreal]

i agree with Bob, there are other good researchers out there finding stuff and the lipkin study to be the last word on cfs/me just wont happen as the ritux study asks too many questions and the potential biomarkers Bond uni found on NK dysfunction. If lipkin finds something that will be good and hopefully more research dollars go into cfs/me, if not then we have the viking researchers in Norway, the Aussie natural killer cell researchers and the old hands bringing new stuff to the table, peterson, klimas etc etc. lets not forget drK. Dr Lerners research has shown that there is away to treat a subset of us. Its not all doom and gloom.

cheers!!!

 

[heapsreal]

i agree with Bob, there are other good researchers out there finding stuff and the lipkin study to be the last word on cfs/me just wont happen as the ritux study asks too many questions and the potential biomarkers Bond uni found on NK dysfunction. If lipkin finds something that will be good and hopefully more research dollars go into cfs/me, if not then we have the viking researchers in Norway, the Aussie natural killer cell researchers and the old hands bringing new stuff to the table, peterson, klimas etc etc. lets not forget drK. Dr Lerners research has shown that there is away to treat a subset of us. Its not all doom and gloom.

cheers!!!

 

[SOC]

Don't get me wrong I'm not at all discouraged about the current state of research. In fact, I'm quite excited about the amount and quality of the research coming down the pike. We are in the (so far) most hopeful period ever for ME/CFS.

I'm just wondering if there's really anything earth-shattering about Lipkin's XMRV study. Looks like it's likely to be a bit of a yawner at this point. But I could certainly be missing something. Something is niggling at the back of my mind and making me a little uneasy about this imminent publication. Perhaps I have some not-fully-conscious worry that some PWME are expecting more from this study than it is likely to provide. Or maybe my subconscious is anticipating some big, and probably pointless, argument breaking out among patients. Not sure.

I'm far more interested in the studies about biomarkers, the immune system, and other various and sundry viruses. My bet is still on something messing with our immune systems which is then allowing all these normally manageable infections to run rampant. But heck, who knows?

The ritux work is looking really interesting, but I still don't quite follow how the flawed B cells are managing to cause all our symptoms. Hopefully they'll get a good enough handle on it to explain it to me in layman's terms sometime soon.

 

[SOC]

In terms of public perception, I think very much will depend on the way the information is released to the media. The exact wording of press releases, any quotes uttered on the record by Lipkin or other researchers, etc.

I agree. I'm somewhat reassured, though, by earlier statements by Lipkin and the other researchers with regard to this illness. I expect their press release to be carefully worded so as not to be dismissive of the illness itself. We'll see if I'm right.

 

[taniaaust1]

So... what is everybody else expecting from the publication of this study in another couple of weeks?

not much.

As others have said the Wesselyers could once again make a thing out of it. They havent had much about ME/CFS in the media of late and probably looking for another reason to get to express their views on the illness. No matter how well that study if is put out, I can still imagine this possibly happening.

 

[Enid]

Yes one gets the feeling they (Wessely-ites) will be watching out there quietly to throw in their observations when they can with more mumbo jumbo. But I think research is too advanced and the evidence of certain recurring pathogen findings in so many when thorough investigations are done and the effectiveness of Rituximab means a paradigm shift to the Immune system.

 

[Bob]

The ritux work is looking really interesting, but I still don't quite follow how the flawed B cells are managing to cause all our symptoms. Hopefully they'll get a good enough handle on it to explain it to me in layman's terms sometime soon.

One theory is that EBV lives and replicates in B-cells, and reactivates HERVs. The reactivated HERVs tie in with the retroviral research, and could potentially explain some retroviral antibody findings, and even some retroviral sequences. Kill the B-cells, and you kill the EBV virus and reduce HERV reactivation. That's a theory anyway. It might not be the answer.

 

[currer]

Frankly I no longer trust "science".

This episode has educated me on the political interference in scientific research.

If the Lipkin study comes up negative, I will read the detail carefully. If they only look for XMRV, which we already know not to be there, I wont be convinced.

it is a shame, isnt it, that one should be led into such distrust of "science".

 

[Mula]

One theory is that EBV lives and replicates in B-cells, and reactivates HERVs. The reactivated HERVs tie in with the retroviral research, and could potentially explain some retroviral antibody findings, and even some retroviral sequences. Kill the B-cells, and you kill the EBV virus and reduce HERV reactivation. That's a theory anyway. It might not be the answer.

Patients taking Rituximab relapsed shortly after stopping treatment which had removed B cells from the body, suggesting that these cells are not the source of the disease.

This diagram (fig 1) reports on the rebuilding of B cell levels over time and would not correspond with a sharp return to disease status seen in several of the patients
http://bloodjournal.hematologylibrary.org/content/117/7/2275.full

 

[heapsreal]

Patients taking Rituximab relapsed shortly after stopping treatment which had removed B cells from the body, suggesting that these cells are not the source of the disease.

This diagram (fig 1) reports on the rebuilding of B cell levels over time and would not correspond with a sharp return to disease status seen in several of the patients
http://bloodjournal.hematologylibrary.org/content/117/7/2275.full

Also herpes viruses also like to hide out in the nerves system. I think the idea of ritux and antivirals together will be more effective. I dont think we can totally get rid of these viruses, probably only lower viral load and maybe if nk cells work then they can keep these viruses dormant. More research dollars is what the scientists need.

cheers!!!

 

[August59]

I don't think the Rituximab kills all the B-cells and that may be the problem as when they stop taken it the B-cells are rapidly replenishing and right behind it is the EBV replinishing itself. Might be a possiblity that taking an AV while on Rituximab or take Rituximab for awhile and then stop and go on AV for awhile and cycle like this a few times.

The more I read about the EBV the more it bothers me in away because it is a mean virus goes virtually anywhere in the body.

I have 2 big lymph nodes pop up on the side of my neck in the last 2 to 3 weeks. CT scan just showed they were 2.3 times their normal size, so now i have to get Fine Needle Aspirations done on them. Out of the blue the radoligist made a note that cervical stenosis has narrowed my cervical canal down to 6mm from C4-C5 and C5-C6.

 

[Firestormm]

If the 'Lipkin' research had been produced shortly after it had been commissioned (or even a year after) then I think it's impact would have been greater because by all accounts it will be a very thorough study. However, given the delay (for whatever reasons) they will hopefully have learned quite a lot from the studies that have been published since 2010 and their own research will be better for it. I expect this to be a more extensive and credible bit of work as a result.

As to the result, bottom line? Well I would be frankly disbelieving if they returned a positive verdict on XMRV but it could well be and indeed I hope that they have taken adequate time and put in the effort to identify any possible sources of contamination that might explain any positive from any one participant's contributions.

Indeed it is my express desire to see the study reach a conclusion that doesn't leave anything 'hanging out there' (positive or negative) but I'm not convinced this is at all likely. As ever it will be the interpretation of the results that will result in any debate and disagreement.

I think it is worth remembering that this study was commissioned as a result of both the Lombardi et al and Lo et al findings - and so I wouldn't personally be looking or expecting anything more than a thorough investigation of those findings and an explanation for what they are likely to have actually found.

What I mean is that whilst 'Lipkin' will not I don't expect produce an exactly replicated (as literally defined) study of either paper using exactly their methodology (because that would be dumb) - I would hope that these methods were studied and at least incorporated into their thinking, then bettered/improved/explained.

The overall aim of 'Lipkin' is to try and replicate the results of both papers and not (I don't believe) to answer the question: Do people with ME have a retrovirus? This is about explaining previously published research (Lombardi and Lo and the XMRV of Silverman).

That e.g. Mikovits is on board is in my esteemed and highly qualified (academically my dear Flex )* view 'a good thing' just as it was for her and others to be in on the Blood Working Group study.

Mainly though I will simply be glad to see the damn thing published after all this time. Time that I sincerely hope and expect has been usefully employed. This will I hope be the 'end' of Lombardi et al. The paper. Not what some folk seem to think it 'actually' might have revealed.

On the other hand it could demonstrate to Mikovits and Lo and Alter what it was they actually found. That would be good science and a good outcome to the study but maybe too much to hope for I don't know.

(*excuse the private 'joke' with my dear old buddy Flexmeister )

 

[heapsreal]

I don't think the Rituximab kills all the B-cells and that may be the problem as when they stop taken it the B-cells are rapidly replenishing and right behind it is the EBV replinishing itself. Might be a possiblity that taking an AV while on Rituximab or take Rituximab for awhile and then stop and go on AV for awhile and cycle like this a few times.

The more I read about the EBV the more it bothers me in away because it is a mean virus goes virtually anywhere in the body.

I have 2 big lymph nodes pop up on the side of my neck in the last 2 to 3 weeks. CT scan just showed they were 2.3 times their normal size, so now i have to get Fine Needle Aspirations done on them. Out of the blue the radoligist made a note that cervical stenosis has narrowed my cervical canal down to 6mm from C4-C5 and C5-C6.

Probably in the last week or so i have had abit of a down turn and glands in neck have been painful, i think i have had a viral reactivation. not as bad as previous episodes, i just hope the antivirals reduce the chance of this reactivation infecting healthy cells. I have increased my famvir dose of late for this.

I think antivirals play a role in stopping viruses replicate especially into new cells but wont stop the virus reactivate from a dormant state, which is why i think people have to be on antivirals for a few years, waiting for the infected cells to die off. Maybe ritux helps speed up this process by killing the infected b-cells and antivirals stop the reactivated viruses infecting new cells. Sort of how i understand it anyway.

cheers!!!