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Lipkin finds biomarkers not bugs

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 12, 2013.

  1. Firestormm

    Firestormm Guest

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    He wasn't asking specifically for funds - unless (my impression) you have access to a large trust fund - although the CFI is a registered charity: so I suppose you could ask them about establishing a means to donate smaller sums from the community perhaps - that might be a good idea.

    Mainly he was talking about applying pressure to your political representatives. He said that Facui and (I forget) - the CDC and NIH - were receptive to his ideas and to ME research being pursued - but the implication was that of the funds that were available: we just don't have enough of a profile to gain access to what is needed.

    This sequestration that is being applied globally isn't helping: but if we can somehow raise the profile of ME in terms of solid research direction e.g. the kind of collaborative efforts on large scale that CFI is pursuing - and for things like (not my own preference) the microbiome - with some more background from Lipkin himself perhaps: you could try and pressure the government to increase funding for ME.

    I think it needs to be specific. More specific than campaigns in the past. And personal - from you to your own Congressman etc. but it could be planned as part of a PR campaign or an even larger effort. We have - preliminary - biomarkers now: we'd need I think to wait for publication - but that's more credible now than ever before: so it gives us, well, some credibility and we'd not just be demanding funds as before.

    We might also have more background detail from the publication of Lipkin's paper (whenever that will be). Be nice to hear something more solid (excuse the pun) about the microbiome and crap-shoot that he appeared so energised by. I think it could be an expensive waste: but I admit to knowing very little about the direction he wishes to take here.

    In the transcript - and review - I provided a link I think to the Autism and microbiome paper he co-authored. Might be worth taking a look. I will when I get round to it.

    Here's a general piece from Carl Zimmer (also there was another one (NYT I think) linked to in the transcript). You might find it interesting to read more about the possibilities:

    And another recent one from Nat Geo:

    I think the Microbiome is fascinating, don't get me wrong, but I also think it can be a wild goose chase: unless you know what you are looking for it's very easy to get lost.

    There are a hell of a lot of theories out there, and remedies for things that nobody can yet prove: but it would be good to get some hard science on the table in relation to PwME at last.

    In a very mean spirited way, I am pleased that Lipkin and CFI are taking this challenge on. It is very expensive - as he said - and there's obviously no guarantees.

    But I guess it has to be done by somebody - and I'd rather it was him and the incredible team he has assembled within CFI and elsewhere in collaboration.
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  2. snowathlete

    snowathlete

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    One possible explaination for the zero cases in this study might be that anyone with Lyme disease did not make it into the study in the first place, as the people picking the partisipants are good ME/CFS docs who can spot the difference and if I remember correctly Borrelia is in the CCC under conditions that should be excluded before diagnosis.

    Which is why there are still plenty of people with Lyme disease who get misdiagnosed with ME/CFS without Lyme having been ruled out by their non-expert doctors, and subsequently ME/CFS docs find a fair number of patients that come to them with diagnosed ME/CFS actually have Lyme.
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  3. Firestormm

    Firestormm Guest

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    From MECFS Forums:

    I don't believe the forthcoming paper will provide any further detail about these sequences. Not sure when we might discover more.
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  4. snowathlete

    snowathlete

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    Same here. I can't say when it happened exactly, but I was ill for quite a while with sore throats etc, still working etc. trying to find out what was wrong. Then BAM, something changed, the sore throats disappeared but I got much more ill.
  5. snowathlete

    snowathlete

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    Great article Simon, thank you!
    And thanks Russ for your work on all this too!

    Some really interesting stuff there. Lots of questions spring to mind! But I agree that one of the reasons why there is so much value to these studies is the large and robust cohort.

    A nice surprise to hear about some of these results up front before publication. I guess that helps speed the process up of getting the funding he needs to keep things going, else it might take even longer.

    So if I understand correctly, the sequencing for bacteria and fungi is yet to be completed. Would it be a surprise if he found something here? I'd have thought not as bacterias can be just as nasty as viruses and cause cytokine changes. Perhaps though, they have started and not found anything yet, so although they can't confirm it's not bacteria at this stage, they are fairly confident that it's not going to be?

    If anything, it seems to me that Lipkin is even more convinced now of an infectious agent being involved, with these immune results, than he was before.

    Regarding cytokine results not matching other studies, as I understood it, processing has a major impact on the result, so the important thing would be consistancy within Lipkin's tests (which I am sure will be the case) and any subsequent validation tests by someone else.
    Simon likes this.
  6. PDXhausted

    PDXhausted Senior Member

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    Has anyone ever done research looking for pathogens in ear/nose/throat tissue? It seems that many people that have a post-viral onset do so from mono or a mono-like illness where the symptoms concentrate in those areas. I'm under the impression that viruses that park in those areas don't always infect the blood or spinal fluid.

    For me personally, one of my first symptoms was tinnitus. It just popped up one day, and progressively got worse, and then I crashed a few weeks later and developed the rest of my symptoms. Along with that I developed excessive earwax and get ear infections that come and go. I think the microbiome is interesting and important, but I'd love for someone to virus-hunt in my ears.
  7. Firestormm

    Firestormm Guest

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    I tend to agree and Lyme Disease is an exclusion under CCC. This result though does rule out Borellia as am infectious agent involved in CFS it would seem which would endorse the view that CFS is a distinct disease.

    I'd be pretty darn careful who tested me for Borellia before being ruled out and treated - because there's a lot of uncertainty surrounding some of the tests and treatments - but we needn't get into any of that here.

    There was one virus that was omitted which I did think about: Q Fever. I think from my early days with ME is was one of those that was considered a trigger at least. I guess it could show up for some people as a 'shadow'.

    Made me wonder how Mady and Lipkin might have arrived at their choice of pathogens?

    And finally, here is someone who is evidently not impressed with Lipkin's work:

    Dr J Deckoff-Jones and her Bats in the Belfry :zippit:
  8. alex3619

    alex3619 Senior Member

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    Firestormm , Q fever would be part of the bacterial studies, not viral studies. As a result we have yet to hear the verdict on that. Q fever can lead to Post Q Fever, and some of those become indistinguishable from ME. There are parts of the world where outbreaks of this are still common, including in Europe.

    Let me reiterate again, the current results from Lipkin are about acute viral infection and immune markers. Viruses are still not ruled out, just acute viral infection of likely viral pathogens.
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  9. alex3619

    alex3619 Senior Member

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    Just to clarify what I think Lipkin found (or did not find): he did not find evidence of acute viral infection, but did find immune markers. HHV-6 etc. do not always present as acute viral infections, and are not ruled out except as acute viral infections. In other words, the classic viral model, the one doctors learn in med school, does not fit ME. Is that somehow a surprise?
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  10. Firestormm

    Firestormm Guest

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    Thanks Alex. Isn't Borellia a bacteria? This was what he said, prior to listing the agents he could test for:

    I know he later - when talking about what they are also doing at present - he says:

    And it's that part that obviously hasn't been reported on. But the results he did talk about were for active infections as per the list I cited above.

    Not sure if these bacteria and fungi searches will be part of the microbiome and poo-hunt or not: I'd presume so - what do you think?
  11. alex3619

    alex3619 Senior Member

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    You might find this abstract interesting. Be warned its only an abstract. Many of us have circadian issues, particularly long term patients, which I have noted before I start to see after year 3 ... which matches the timing of the shift in cytokines Lipkin observed.

    http://jap.physiology.org/content/early/2013/07/16/japplphysiol.00630.2013.abstract

    Then there is this:

    http://onlinelibrary.wiley.com/doi/10.1111/cpf.12030/abstract
    I wonder if our leptin goes up on day two of a repeat CPET test? It would be interesting to find out.
    anne_likes_red likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    PDXhausted. Some time ago, Newcastle University (Australia) did a study on the bacteria Staph in the nose and found that those who have ME/CFS tend to carry a toxin producing kind of Staph there (25% of healthies carry Staph there but not the kind we tend to do).

    This of cause isnt causing our ME/CFS but seems to be one of those things which can go with it and just one added thing knocking at our health. (So you may want to consider having a nasal swab done and then treating Staph if found there).
  13. taniaaust1

    taniaaust1 Senior Member

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    For anyone interested in the Anellovirus finding.

    "Anellovirus infections are highly prevalent in the general population. A study in Japan found that 75–100% of patients tested were infected with at least one of the three human anelloviruses, and many were infected with multiple species "

    So it seems that finding of the percentage found in us has no meaning at all (unless of cause the tiers were far higher then normal??).
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  14. acer2000

    acer2000 Senior Member

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    I think the issue with sequencing blood and CSF is that some of these agents don't really inhabit either. For example, Lyme testing via PCR in blood and in CSF is specific, but has very low yield. Its mainly a tissue based infection. Some other pathogens might be the opposite. Its really hard to make hard conclusions as to what extent a pathogen is involved unless you know where it primarily lives and those tissues are sampled. So its important that they also look for the antibodies as well.
    heapsreal likes this.
  15. Tally

    Tally Senior Member

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    Thank you for the elaborate reply.

    Unfortunately I'm not from the US, so there's nothing I can do about the government. The best I can do is donate a bit every month.
    Firestormm likes this.
  16. Simon

    Simon

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    Interesting point. Montoya is an HHV6 expert, and the HHV6 foundation are funding his pilot study:
    Valganciclovir shows promise during first randomized clinical trial for treatment of HHV-6 & EBV in CFS patients | HHV-6 Foundation
    So would be interesting to hear what Montoya would say on that issue (and yes, he did supply the samples for this study)
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  17. Gijs

    Gijs Senior Member

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    The news is that there is no news. Lipkin did find nothing special. Only the CSF findings are interesting as a marker because they are consistent. This need to be validated in a larger population. This can proof 'infection' in the nervous system. Which is the cause of this disease, i believe.
  18. alex3619

    alex3619 Senior Member

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    I think we might find leptin can be used as a treatment biomarker, but will be useless diagnostically. In other words, leptin might tell a doctor if a treatment is more likely to be helping than harming.

    Leptin cannot be used diagnostically for two reasons: its found to be high in many conditions including obesity, diabetes and the metabolic syndrome; and its individually variable. However as a treatment biomarker the comparison will always be your own leptin levels.
    snowathlete likes this.
  19. Legendrew

    Legendrew Content team

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    I'd argue the point that CSF markers serve as proof of an infection, viral or otherwise, of the nervous system. They certainly hint at a form of immune dysregulation within the brain and perhaps entire central nervous system but are not even close to showing an infectious causation, certainly that could be one cause of such a dysregulation but there are numerous others to further explore too.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Many viruses like the nervous system, so its possible that those markers found in csf are from viruses. Meningittis is one that comes to find and a recent study i read somewhere and dont have a link, maybe someone can help out, but with some type of new testing ebv was found to be a major cause of viral meningittis where the older testing methods couldnt detect which infection was the issue. chickenpox/shingles loves the nervous system.

    All comes down to which types of tests are the best for which viruses.

    I still cant get past many of us not having chronic viral infections when most of us have low nk function, who's job it is to kill viruses. if its herpes virus or some other virus, if they cant find them then they probably havent looked in the right places or dont have the right tests.

    A quick search of other auto immune illnesses too show viral infections play apart in some of them. There is even some with MS who have improved on valtrex. Maybe when all this is sorted they will possibly find viral infections implicated in other illnesses that they dont have the final answer in like many auto immune illnesses.

    Thats my opinion anyway.
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