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A disease with two faces? Re-naming ME/CFS
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Lipkin finds biomarkers not bugs

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

  1. Legendrew

    Legendrew Content team

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    As far as i'm aware Borrelia is an exclusionary criteria from ME anyway although I guess that depends upon which diagnostic criteria the physician is using. This extensive search is certainly worthwhile but I think it's unwise to pin hopes on this given the history pathogens have had in terms of ME research. From a personal standpoint I doubt any infectious agent lies at the heart - perhaps they simply serve to exacerbate the problem in those who have them.

    I agree that even if these pathogens are hiding away in tissues there should be some evidence of the active infection. As far as i'm concerned if the pathogen is inert in these tissues there should be no symptoms so I feel that line of thought should be throw out instantly.
     
  2. Firestormm

    Firestormm Guest

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    The microbiome and poo

    This is a gentle introduction to the microbiome and also to Jeroen Raes who quite coincidentally I was informed of by Linda Vasteenwinckel when discussing the article on Lipkin above.

    Linda produces ME/CFS Evolving Science on Facebook - always my first port of call for new publications - and said of Dr Raes:

    I'd certainly not encountered him before and need to do some reading I think.

    Thanks to Antares in NYC for posting the programme on a separate thread.​
    I believe DOB is still featured on BBC2 each week - though I may be wrong as I don't have a television.​
    :cool:
     
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  3. Legendrew

    Legendrew Content team

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    Interesting video - yet again the vagus nerve comes up. Seems to be linked to everything.
     
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  4. alex3619

    alex3619 Senior Member

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    I think they will find viruses in tissue, but those require different testing.

    On the other hand, if our B cell immunity is nuts, and our T cells cranked up, and our RNase L modified and amplified, we might indeed have something like normal virus immunity. The problem is that under these conditions if we get a virus then our immune systems are getting a boot and will go into overdrive. Also I think it more likely we will get more viral infections. Its about frequency, not acute viral severity. It would be about immune severity i.e. how hard the symptoms are going to hit us, and how long it will take to recover. This point of view can be summed up in the phrase "its the immune system, not a virus".
     
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  5. Sparrowhawk

    Sparrowhawk Senior Member

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    So this is one of those puzzlers. For some with ME/CFS they have very overt and ongoing signs of illness like swollen lymph nodes, sore throat, headaches etc. My particular thing presented with months of pervasive dizziness as a prelude to a complete collapse with headache and the whole nine yards. But since that three month period I have literally not gotten "sick" while all of my famiy members (kids got to school and wife is a teacher) have brought home all sorts of things. That seems to jive with what some others on this board have also reported. Like the immune system is in overdrive, but while you're not getting "better" you still don't get "sick." Not complaining because if I got flu or a cold on top of this it wouldn't be pretty. But it doesn't make sense to me.
     
  6. chronix

    chronix

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    "However, they did find that patients had elevated levels of the ⁠TH-2 type⁠ cytokines IL-10 and IL-13 and elevated levels of four TH-1 cytokine: IL-1 beta, TNF-alpha, IL-5, and IL-17."

    Haven't elevated cytokines been found in depression and other psychiatric conditions as well as diseases with co-morbid depression, where in the latter, cytokines are thought to play a role in the depression but not the main illness?

    Can cytokine profiles serve as reliable biomarkers, and if so, will CFS be distinguishable from psychiatric disorders?
     
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  7. natasa778

    natasa778 Senior Member

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    Interesting that lowered production of these very cytokines are associated with disease progression and immunological damage in HIV patients – HIV+ long-term nonprogressors retain the ability to make these cytokines, while individuals with progressive disease start producing less of Il-17, TNF-α and IL-2 after a while…


    Also interesting to read that this sudden downturn in cytokine levels happened after exactly 3.1 years in this patient
    Patient maintained a stable/low viral set point for 3.1 years before control of viral replication was lost … Gradual loss of functionality was observed in these responses, characterized by early loss of IL-2 …



    This paper could give us further clues on reduced IL-17 levels in chronic sufferers (also possibly linking to gut barrier breakdown)

     
  8. acer2000

    acer2000 Senior Member

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    I will have to go back and check, but I'm fairly certain the Lyme PCR yield is in the low single digits. In this case, that would mean that if all 200-something people he was studying had proven Lyme disease, only a few would show up as positive using that method. My point is not to argue that Lyme is or isn't the cause here, its to show that for any of the hundreds of pathogens he tested for using the blood and CSF with sequencing, the negative result he got could be enough to rule out their involvement completely, or it could mean nothing – it all depends on the nature of that particular bug.
     
  9. SOC

    SOC Senior Member

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    It is somewhat outdated and oversimplified to consider only the Th-1 and Th-2 branches. In fact, the Th-17 branch may be at the root of our difficulties.

    From ebioscience:
    [my bolding]
     
  10. SOC

    SOC Senior Member

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    Also, immune dysregulation can result in multiple infections which, as in HIV infection, cause the vast majority of the negative symptoms. Such infections don't have to be continuous or acute. Recurring or reactivating infections, as well as tissue infections, are not evident 100% if the time in plasma. Finding viral particles in the blood in a population like ours may require taking blood during bad periods or crashes -- just the time when most of us don't go to the doctor.

    The lack of evidence of viral DNA in plasma suggests that we don't have an on-going acute infection with a known virus. That is not surprising -- we've been pretty sure of that for a long time. That does not mean that such infections are not reactivating on a regular basis, chronic in tissues not yet studied, or not detectable by current methods.

    As the world learned from HIV, viruses to not have to be causative for the illness to be causative for many of the symptoms of the illness. The root cause should be found in most of us, secondary infections can be many and varied.

    I think (and it looks like Lipkin thinks so, too) that something is causing immune dysregulation in ME/CFS. That may be an infection that has come and gone, it could be an as yet undetected pathogen, it could be genetic, it could be something else entirely. Lipkin would like to find that something. We would like that, too. :) However, we are also concerned about finding and treating secondary infections. That may not be part of Lipkin's concern at the moment. That doesn't mean investigation of secondary infections should be abandoned.
     
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  11. snowathlete

    snowathlete

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    I'd be interested to see some data on how accurate the methods being used are and what that might mean in terms of the pathogens being looked for. I know some bacteria for instance are very hard to detect, and it's not uncommon for samples to be left to multiply in various growth mediums before they are of sufficient numbers to be detected by PCR.
     
  12. Omar88

    Omar88 Senior Member

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    Here's a story I love to tell but I will keep it brief. What do you do when your beloved college son gets

    ME/CFS? Well, that's a problem.

    What about if you are one of the richest people in the world and you also are a get it done, hard driving

    Harvard business man who is a

    doer? Then you do what any loving, dedicated, brilliant billionaire father would do, you fund the ME/CFS

    research yourself and you.

    bring answers and treatment to your very own son. It's brilliant. Done!

    That's what Glenn Hutchins did, the 56 year old mega successful businessman who single handedly out

    spent the entire United States government's in funding ME/CFS Research during the last three years. Glenn

    has made a habit out of succeeding in life, and his Silver Lake investment firm is one of the most

    successful equity firms in the world. Will he do something major for ME/CFS? That's a silly question. Of course he will!

    Glenn and his son hit the same road blocks we all do when we were diagnosed with ME/CFS, so Glenn

    decided to build a bridge over those blocks by ponying up close to $15 million to buy the services and

    interests of the world’s BEST ME/CFS researchers, virologists, and other medical experts that all the money

    in the world could buy. One of them was the brilliant and lauded virologists, Dr. Ian Lipkin, who you have

    probably seen on the cover or one or another magazines. He is a virus hunter. And he's the best one in the world.

    He just completed a monstrous study looking at a very large number of ME/CFS patients to see what if any

    pathogens is involved in ME/CFS. He looked for everything. And his findings were surprising. Here is the

    complete transcript of a large conference call on Sept. 10. The findings are fascinating and there’s a lot to

    about, and I will be writing more about what they probably mean in the weeks and months ahead. There

    is that much to write about.

    I hope you enjoy this barrier crushing research, with its many ramifications. Isn't it great that we have this

    kind of research going on even when we don't know it is? It's happening everywhere, and it's one of the

    main reasons why patients will eventually have completely effective treatments and one day even the cure.

    A quick note, as I would be remiss not to do this. To Glenn Hutchins, on behalf of all Chronic Fatigue

    Syndrome and (the more difficult to qualify for) Myalgic Encephalomyelitis patients everywhere, thank you

    very, very much.
    https://www.facebook.com/photo.php?...a.10150589792146095.443635.57430136094&type=1
     
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  13. snowathlete

    snowathlete

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    Whatever that something is that triggers, and perhaps maintains that immune dysfunction, my thinking on secondary infections has changed quite a bit in the last year or so. I think with lots of different viruses having been put forward to have links with ME/CFS over the years, the view that we have a lot of coinfections has become fairly common and I used to think that myself. However, when I thought about this some more, I considered that in a disease like HIV-AIDS where you have immune deficiency and you get these secondary infections, they are quite varied and even a relatively mild pathogen can become lethal. Many of these infections are very easily identifiable - not just through testing - but through symtoms; it is usually clearly apparent that a HIV sufferer has hepatitus, tuberculosis, etc. based on symptoms alone.

    Even if we had a less severe immune deficiency than HIV-AIDS, we don't get clear symptoms of secondary infections that allow identification of that secondary infection based on symtoms, as far as I can tell. To me this suggests that we don't have an immune deficiency leading to a variety of seconary infections. Perhaps none at all.

    Using the common cold as an example (which it seems many of us - thought not all - don't get), If we had an immune deficiency of some kind then I'd have thought we would be more suseptible to them, not less so. So this suggests to me (and this is just my current thoughts on this and I'm very open to discussion) that as a whole, we have an up-regulated immune system not down-regulated. That isn't to say that we can't have part of our immune system that are deficient, perhaps that is likely given previously reported findings on NK-cells etc. but I think other parts of our immune system are taking up the slack by being on all the time, meaning as a whole our immune system is not deficient. This alone could explain the vast majority of our symptoms I'd have thought.
     
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  14. SOC

    SOC Senior Member

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    Many of us do have symptoms of herpesvirus infections -- extreme fatigue, sore throat, swollen glands, and elevated antibody titres. The problem is that doctors don't believe that herpesvirus reactivations occur in immunocompetent patients, so they declare that we cannot have those infections. The assumption there is that we are immunocompetent. I actually asked my GP if I had HIV and the symptoms and antibody titres I do, would he believe I had reactivated herpesvirus infections and prescribe antivirals. He said, "Certainly. But you don't have HIV. A healthy person's immune system prevents reactivation of herpesvirus infections, so you can't have reactivations." :rolleyes: That seems to be the ubiquitous thinking in the medical world on herpesvirus reactivations. No one said they teach science or logic in medical school.

    I think there is similar thinking in other pathogens as well -- everyone has them, but healthy immune systems keep them in check, so ME/CFS patients can't have them because they aren't immune-impaired. o_O Doctors like Dr Klimas and KDM, who are aware of immune dysfunction in ME/CFS, often prescribe abx and antivirals for secondary infections detected by relatively common methods.

    Not all people with ME/CFS don't get colds. (Daughter and I are both fighting colds now, as a matter of fact) That seems to me to be more of a stage of the illness thing, although I could certainly be wrong. :) In my case, I went through a catching everything phase, an allergic MCS-type phase where I didn't catch common colds, and a more normal but still inclined to catch things phase.

    The immune system is far more complicated than up-regulated or down-regulated. It's far from a certainty that if one part fails, another part will compensate, or that if some compensation does occurs, the immune system can maintain that abnormal condition long-term.

    I don't know that all of us have the same immune abnormalities. That could explain why we have different secondary infections, and/or different immune reactions. Those different immune abnormalities may be a factor in subsets in the illness.
     
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  15. lansbergen

    lansbergen Senior Member

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    I am convinced it will try to compensate but there is no garantee it will succeed. When one thing fails it will try something else and at one point in time it could push the right button.
     
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  16. Dolche

    Dolche Dolche

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    YES! IT COULD BE A COMBINATION OF OUR BAD DNA DETOX GENES AND MOLD( it's a bacteria).
    I HOPE ALL CFS PATIENTS TAKE A LOOK AT WHAT FUNCTIONAL ALTERNATIVE DOCTORS THAT SPECIALIZE IN MOLD and the connection IAN LIPKIN HAVE FOUND...

    A POSSIBLE BACTERIA OR FUNGI EXPOSURE! LEPTIN HORMONE! IMMUNE INFLAMATION!
    Take a look at DR?SHOEMAKER AND SPANOUGLE AND FINDING ON MOLD EXPOSURE! LEPTIN! IMMUNE INFLAMMATION! AND LEAKY GUT. It would make sense mold is an epidemic 25 percent of people have poor detox pathways.

    http://www.survivingmold.com/diagnosis/the-biotoxin-pathway
    http://sponauglewellness.com/wellness-programs/mold-toxicity/black-mold-used-in-weaponry/



    Functional medicine world meets traditional medicine (please work together!)
     
  17. Rachael

    Rachael

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    I have always said that since childhood I had an immune system that was over-performing; a very good healer and few colds, flues or viruses. The day I developed severe ME/CFS over twenty-five years ago was when my over-achieving immune system crossed the line and became a full-blown autoimmune disease. The genes for (up-regulated immune function) and many triggers (viruses, bacterias, vaccines, chemicals etc) leave some of us more susceptible to develop ME/CFS.
     
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  18. Dolche

    Dolche Dolche

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    Interesting lipkin findings.....funny....Dr.shoemakers a functional doctor feels mold a fungi bacteria is the trigger. Some people with bad detox genes get implicated. His theory revolves mold affecting leptin in hypothalamus, leaky gut, poor ATP production,sleep problems, cytokine upregulation.
    http://www.survivingmold.com/diagnosis/the-biotoxin-pathway
    There is a connection . They need to talk.
     
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  19. Marlène

    Marlène Senior Member

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    I think ME is cancer of the immune system.
     
  20. globalpilot

    globalpilot Senior Member

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    He only tested plasma for infection didn't he ?, and CSF ? He didn't test white blood cells. And there is activated immune system, both Th1 and Th2. I wouldn't throw out the infection impact just yet. Others are finding infections - this needs to be explained.
     
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