Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 1, 2013.
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It's great to hear these details! Very well summed up. So pleasing that every time that I hear something more about the pathogens study it is something good. It's really great that they are looking at gene expression too and immune abnormalities too.
I like everything about this study; its the kind of thing we couldn't have dreamed of a few years ago. Can't wait for it to finish. 2013 really could be our year!
Thanks for this well-written, informative article. It's refreshing to read about a study that wll actually make a substantial contribution to the knowledge base, instead of the usual junk research whose main endpoint is to avoid the business end of 'publish or perish'.
Fantastic, Simon - I've been dying to know what kind of progress they've been making on this! Thanks for such a good summary.
I'm pleased that they're expecting to start to submit papers in the next few months.
You're right, we couldn't have expected anything like this a few years ago - XMRV, even though it was a dead end, bought us this opportunity.
Thanks snowathlete, jimmells and Sasha - glad you liked it!
The presentation iteself was quite complex but Mady Hornig was enormously helpful answering my many questions so hope it's all correct. And I really hope they can get funding for all the cohorts they would like to study
I wholeheartedly agree: Mady Hornig and Ian Lipkin are class acts and whatever the findings from the study they will be robust conclusions that others (and hopefully they themselves) can build on.
I just wanted to say I love that cute pathogen image
I've recently been having bad reactions to probiotics. I've never had this problem before. I've been wondering if it's related to some pathogen. I stopped probiotics for a month or longer and then once I started is when I started having trouble.
Yeah!!! This is great news!! Thank you for posting this!!
What's the significance of gene expression and where can I read more about it? I've heard someone mention that methylation affects gene expression which I'm curious about since I'm following a methylation protocol. It's also been referenced in Life Extension magazine in relation to calorie restriction and mimetics. They seem to think it's important, but I don't understand any of it.
Thanks Simon! Looking forward to the results. I hope the cohort is well-defined too.
I wish everyone was getting the heavy-duty phase, not just the negatives from the first phase.
Edit: Simon later clarifies that "20% of those positive in stage 1 get sequenced in stage 2 regardless".
Thank you so much for this article! I've also been dying to know what was going on with this study.
Thanks for that info Simon.
When reading about this study, I often get a fear that the likely heterogeneous nature of CFS will lead to a misleading negative result. I know that I've seen Lipkin talk about CFS as being likely to have a number of different causes, but when there is reason to think that (for some) abnormal responses to common infections like EBV play some role, then if we do not understand the mechanism by which these responses occur (look at the trouble there's been understanding the role of EBV in MS) a well designed study which fails to find solid relationships could be taken as 'evidence of absence'.
From what I've read of his work with autism (another difficult area) and his brief work on XMRV, I think Lipkin seems like a great guy to have involved in the science of CFS, and he seems to have a cautious and understanding approach to the politics too... but I've still got a concern about how people at the Science Media Centre could present negative results.
Are they going to be looking at CNS fluid in the studies? Or just blood?
Great article Simon and it's great to have the results of this study to look forward to! Even negative results (which I think are unlikely) are progress, as they narrow down the possibilities. As long as the study is well-run, it'll be useful
I was just thinking that they must've not considered looking at cerebrospinal fluid or tissue biopsies because it costs lots more $ and is lots more cumbersome.
A member here brought my attention to the fact that, for instance, hhv6 may not be found in blood but in tissue such as in gut as I myself have shown (i've never shown hhv6 in blood but have super high levels of it in two gut biopsies). So what if this study shows false negatives?
Bit more on cohorts:
So far, just bloods, but Mady Hornig enthused about Dan Peterson's Cerebro Spinal Fluid samples and hopes to get funding for these too. Peterson has 60 extremely-well defined ME/CFS patients, plus an equal number of healthy controls or 'comparators' i.e. patients with specific illnesses eg MS.
I think they are. Here's a quote from CFI's Scott Carlson about their cohort in a CFS Central Interview:
So that's half of the pathogen samples in this study. I'm fairly sure (but not 100%) that most of the remainder are from the NIH XMRV study (that Lipkin & Hornig ran) which used Canadian Consensus Criteria only.
I would have thought Dr Chia's patients would have been of interest - stomach biopsies??
I didn't see in the article who is funding these studies. Is it the CFI? I imagine they would be very expensive!
Reasonable points, and Mady Hornig and Ian Lipkin have designed the studies to take account of this, at least to some extent.
First off, they have huge samples (esp if they get funding for 800 patients) which will make it easier to detect a real association, even if there are several sub-groups within CFS (which most people expect there to be). But even more important is their work on protein profiles.
One possibility Mady Hornig discusses is where many different pathogens cause the illness (eg if it's a much down to the person's genetic make up, and the environment, as it is to any bug). Their specific search for markers of immune response, inflammation and oxidative stress should show if there are general signs of infection in CFS patients vs controls. But also this seach, plus the wider seach of proteins they are doing on a sub-sample, shuold also pick up any general disturbances in the immune system, or other systems in the body.
So I think it's unlikely that the study would completely find 'evidence of absence' even if no pathogens are definitively found. Mady Hornig's talk was mainly about her work in other hard-to-understand illnesses and the kind of innovative and imaginative work she's done elsewhere strongly suggestss she won't give up even with a negative result - blog coming very soon!
While there's know controlling how the SMC might spin 'no pathogens linked to CFS' results, dismissing Lipkin's work - let's say they finds no pathogens but do find signs of abmormalities - won't be easy: he's a major-league scientist.
Did she say anything in her talk about treatments, Simon, if any of this stuff comes up positive?
I know it's not her area and it would be hard to talk specifically about treatments before the bugs/host end has been done but I wondered if her experience in doing this sort of thing with other diseases had given her any experience about what happens next, once that research is done - does it tend to point to treatments that can be fast-tracked?
And Lipkin has experience from XMRV of how ME/CFS stories get negatively spun, so he'll probably be carefull how anything is published, even potential negative aspects.
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