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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. Nielk

    Nielk

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  2. Bob

    Bob

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  3. Bob

    Bob

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    Re Dr Snell's repeat CPET testing; Dr Snell seems not to be aware of any other illnesses which show the same pattern of results in repeat CPET tests. But even if it turns out not to be an absolutely unique biomarker, it could still be a useful diagnostic and research tool. A word of caution though: I think Dr Snell has indicated that some other researchers have not managed to replicate his research, and he has not exactly replicated his own past test results in his latest study, and the latest study was not large, with 51 CFS patients. So although it could potentially be an exceptionally useful biomarker, if the research proves to be reliably replicable, it stills seems to be an exploratory area of research. Dr Snell's latest study was able to distinguish CFS patients from healthy controls with 95% accuracy with a two-day CPET test.

    There's a helpful PR article about Dr Snell's latest research paper, via Simon, here:
    http://forums.phoenixrising.me/inde...matic-drop-in-me-cfs-exercise-capacity.24485/

    Here are a couple of extracts that are relevant to some of the discussions in this thread:
     
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  4. aimossy

    aimossy Senior Member

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    I am tired right now but wondering about this agent that they found, cant remember accurately did he say in spinal fluid and plasma and did not elaborate any further from that.im suspicious that there is something he is holding back on probably for good reason but man that peaked my interest.tehe I am looking forward to anything published.
     
  5. vli

    vli

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    Can someone explain this as well to me PLEASE. I have been wondering this ever since lipkin said he wants to look at microbiome.
     
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  6. jspotila

    jspotila Senior Member

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    Some ME/CFS patients have an abnormal blunted heart rate response on day 1, but not everybody does. So the utility of day 1 for distinguishing from deconditioning will be limited.
     
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  7. jspotila

    jspotila Senior Member

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    Excellent question! I don't know if any data has been published on people with infectious diseases and two day test. Perhaps HIV/AIDS or Hep C? Great question. There's a lot of data about two day CPET in congestive heart failure, etc. I would have to go through the Snell et al papers and check the references, as they cite that work.
     
  8. alex3619

    alex3619 Senior Member

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    But how is a blunted heart rate response different from deconditioning? I don't think the issue with one single test and discriminating it from deconditioning has ever been adequately dealt with, but if a single test is to substitute for a double test, we need to be sure its adequate. I know some of us show problems on day one, and I think if we could use a supine bike then many more severe patients would show issues in mere moments. My question is about the sometimes claim that a one day test is OK. I don't know that it is. This would be a good question to pose to Snell or Stevens etc.

    At the moment the two day CPET seems to be the gold standard. One day CPET might be the silver standard, but I suspect its more like bronze - I suspect other muscle or cardiovascular testing might be better, including how much blood is being pumped through the heart, or a test for blood volume, or even a test for muscle lactate. Of course the 6 minute walking test is then a cheap silver-coated plastic knockoff.
     
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  9. aimossy

    aimossy Senior Member

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    I would like to learn a bit more about that too, my instinct is that its a start and poo is 50% bacteria in weight and he has knowledge in this area he may move on to gut biopsy eventually.
     
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  10. alex3619

    alex3619 Senior Member

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    They have stated they have tested other diseases, recently. I don't really recall the list though, and I am not sure its been formally published. These include MS and perhaps lupus, or was it sjogrens? The CPET is a standard test, we know what other diseases give as a response, what I am not sure is clear is what other disease always do on a second consecutive CPET.
     
  11. alex3619

    alex3619 Senior Member

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    Many years ago I posed a question to, iirc, KDM if CFS could be from a bacteriophage, a virus that infects bacteria. I put this question to him in the context of mitochondria, which are very similar to bacteria, but I think (I no longer recall) that I also discussed gut bacteria.

    A lot of people are concerned about gut bacteria and the immune system. Its a hot topic in research. The immune system and gut bacteria develop together. There is evidence that a disturbed gut microbiome, which is the collection of different gut bacteria species and how they operate together, may disrupt the immune system. There is also evidence that a disturbed immune system may disrupt the gut microbiome. The question is whether or not this is important in ME. Its quite likely it is, but nothing substitutes for doing the science. This might eventually look less like a search for a pathogen, than an analysis of gut ecology.

    What I suggested many years ago now, quite a number of times I think, is what happens if the virus is infecting the gut bacteria? It would not be a human virus, and most likely would not show up in blood or CSF. So nobody might even be looking for it. I am not sure Lipkin is looking at this either ... but if its discovered there are consistent problems with the gut microbiome then issues like this may be looked at more closely.

    Unless Lipkin is talking about something else? Does anyone have any other ideas?
     
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  12. outofstep

    outofstep

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    I agree with Daffodil about the tissue testing. That's a no-brainer, and it seems really irresponsible to imply that there are no pathogens without testing tissue, particularly since they've been found in tissue by other researchers. His poop fixation is making me very nervous, because what if he blows through all of that money and he's wrong? Where does he go from there? It seems very likely that the pathogen could be in gut tissue, but does that necessarily mean that it is excreted? And does it make anyone else uncomfortable that he's basically discredited viral CFS research done for the past almost 30 years? And where does that leave patients who have active infections per antibody testing and are responding to antiviral and antibiotic therapies? And why can't I find any comments on this study from any other CFS researchers? And why is Fauci suddenly our friend? I am having some major misgivings about all of this, and am wondering if anyone else is feeling the same way.
     
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  13. biophile

    biophile Places I'd rather be.

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    The mRNA gene expression PEM test of Light et al is a one day test. Perhaps that could be useful? I wonder if they have tried a 2 day test? Would be interesting to see what happens then, and order of magnitude greater expression again? Combining the Light et al mRNA test and the Snell et al CPET test (with some other muscle or cardiovascular testing too?), while retaining the 2 day testing, would paint a convincing picture for post-exertional symptomatology.

    Re deconditioning. CFS patients with numerous symptoms and deconditioned people without CFS symptoms performed similarly on the first test. This alone places deconditioning in serious doubt as a primary factor. The burden of evidence should be on those making the claims that deconditioning plays a major primary role in CFS. Where is it?
     
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  14. Daffodil

    Daffodil Senior Member

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    hi out of step. if the HERV/autoimmune theory is correct, the HERV could be activated by the offending infection. this infection could become chronic but respond to antivirals, for example, and the result would be that the HERV gets quieted down. maybe this happens in some people only - people whose disease is newer, who have less HERV activity, less inflammation, whatever...... lol obviously wild guessing here
     
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  15. aimossy

    aimossy Senior Member

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    If they can prove that the immune system is activated/active and isolate a test for that there goes the test for gps.that is kind of what prof Tate is up to. using new tools to isolate a protein that shows that. this was inspired by another study done on immune system stuff elsewhere. Simon put it up in the new research section a wee while ago. Prof Warren Tate Otago university if anyone is interested. Yes New Zealand is small but we pack a punch, fingers crossed for all the researchers building info up on me/cfs everywhere.If you don't have a crack at it you never get anywhere and you find things out in the process. I am just really glad that research is even happening right now. yeah no cures yet but im hopeful for acknowledgment of me/cfs being real in a few years in the health arena.
     
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  16. Otis

    Otis Señor Mumbler

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    That's good anecdotal information about AT. I agree that insurance and disability offices won't accept this data.

    I want folks that read this understand that CPET is the test, one day or two, that we're talking about in the context of this study and not the very much more narrowly used AT. CPET is considered the "Gold Standard" for Cardiopulmonary Exercise Testing. CPET had a long track record before Snell/Stevens turned into a two day test and tested M.E. patients.

    I also want to put forward the idea that we need other measures for people who are completely bed/housebound. I ask that our advocates don't forget that group.

    The most disabled still have to prove to disability (insurance) companies and governments that they can't work. It may seem obvious that this group can't work but the burden of proof still lies with a patient group least able to make their case.
     
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  17. Dolphin

    Dolphin Senior Member

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    I haven't been following this closely. I would fit into a group who wouldn't be able (or want) to do even a single test. However, I could see how the double test could still be useful: it could reduce heterogeneity in studies. If one then does further testing e.g. some sort of blood testing, on the group with the abnormal test results, hopefully results would be more consistent than if one didn't check them/stratify them in this way. The more severely affected could then have the blood test which had been developed, without having to do exercise test.
    (perhaps I'm stating the obvious).
     
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  18. outofstep

    outofstep

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    hey Daffodil, I still think that the HERV hypothesis is very plausible, even though Huber didn't find anything in her HHV-6/7 study. And yeah I agree that antivirals could be treating an HERV, or improving immune function b/c they can have immune modulating properties. But it's weird that people are testing antibody positive for pathogens, and Lipkin can't find them but other researchers can, and he doesn't want to look at tissue because it's too invasive. And CFS specialists (and other specialists who treat infections common in CFS) have been treating patients for specific infections, their titers have decreased, and they've improved, and the pathogens have been found in tissue, but all of that is apparently meaningless now because Lipkin didn't find anything significant in plasma or spinal fluid. I'm not sure how drs are going to justify antiviral/antibiotic treatment if Lipkin says that there's nothing there. I'd really like to hear what CFS specialists think about this.
     
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  19. vli

    vli

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    I really agree w this, in view of the successes seen by members like SOC, heapsreal and RUkiddingME & others who've GOTTEN BETTER on valcyte!!!
     
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  20. SOC

    SOC Senior Member

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    Theoretically, if one has an active infection determined by testing, one should be able to get abx or antivirals for it even if it isn't the cause of ME/CFS. It could be an unrelated infection or a secondary infection. An ME/CFS diagnosis shouldn't preclude one from treatment for other illnesses. Theoretically. :rolleyes:


    Consider that EBV, HHV-6, CMV, HHV-8 (Karposi's sarcoma), for example, are not causative for HIV/AIDS, nor do all (or even most these days) HIV/AIDS patients have those active infections. Those that do, however, get treatment for them. They are known secondary infections that reactivate because of the immune dysfunction caused by HIV. We could be in a similar boat.

    Lipkin's work is still preliminary and what we understand about it is very much less than Lipkin knows. I don't think we should give too much weight to our extrapolations beyond the very, very limited data we currently have. As far as I understand at present, all we know is that Dr Lipkin's team has not found a smoking gun -- a causative agent -- for ME/CFS. That doesn't mean that infections -- different ones in different groups maybe -- aren't 1) causing us a lot of misery, and 2) treatable. Nor does it mean that there is not a single causative infectious agent. They're still looking.

    That said, my best guess at this point is that something is causing immune dysfunction in us which then leads to multiple chronic infections secondary to the primary cause. The question is: What is that something? Decades ago, the answer to a very similar question for a different group of patients turned out to be the HIV retrovirus. Our answer may be genetic, environmental, or an infection with a currently unidentified virus or retrovirus. There's still a lot of work to be done.

    Hold on to your hats, folks. I think this is going to be a pretty wild ride. ;)
     
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