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The GIRA Theory, a new A-Z theory of the cause of ME

Discussion in 'General ME/CFS News' started by redo, Jan 6, 2012.

  1. redo

    redo Senior Member

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    The GIRA theory is a general theory of autoimmunity, and here I will present the GIRA theory in relation with myalgic encephalitis. No matter what lies behind ME, a theory must explain these three vital questions.

    Three big questions in ME
    How is the disease transmitted?
    Why has it been increasing so much in prevalence in the Western world?
    Why can so different things such as EBV or giardia, food poisoning or the flu trigger the disease?

    While I don't sit with all the answers yet, I will offer my explanation. First, I'd like to explain what the acronym GIRA stands for.
    G - Gut
    I - (Temporary) Immune suppressing trigger
    R - RNA virus
    A - Autoimmunity/autoinflammation

    Gut
    To understand the chain of events, we'll take them one by one. First out, the gut. The content of the gut consists of more than 200 trillion cells (that is largely microbes, bacteria). It's quite an amazing number. The human body as a whole consists of only a fraction of that number of cells. With that share amount of bacteria, it's of utmost importance which of the bacteria is in a majority, and which is a minority. We know very well what happens when the wrong bacteria becomes a majority in the mouth; we get cavities. And, when the wrong bacteria is in a majority in the gut, we among other things get problems with the immune system. It begins malfunctioning, and especially when it comes to how it is able to handle RNA viruses.

    Immune suppressing trigger
    EBV, the flu, giardia, food poisoning, a tickbite, severe stress are some of the things which can trigger the very specific condition myalgic encephalitis. "Why", is the most important question to understanding the disease. The only common nominator is that they all suppress the immune system for a short period of time. Just for long enough that it can trigger a latent virus. To be specific, a latent endogenous RNA virus, which brings us to the next point on our list.

    RNA virus
    All humans have RNA viruses in our bodies. Endogenous RNA viruses. Throughout evolution human bodies have adapted, and we've learned to silence these RNA viruses. But, if the wrong bacteria dominate the gut, the immune system gets distorted, and all we need for the latent RNA viruses to get active is a immune suppressing trigger. That can be anything for EBV to the flu. What happens when the RNA virus becomes active is autoimmunity/autoinflammation. The RNA virus might be one which is identified, and it might be one which isn't known yet. We don't know.

    Autoimmunity/autoinflammation
    When the latent RNA virus is active, it distort the immune system (like RNA viruses are famous for). What these RNA viruses do, is for the most part to distort the immune system in such a way that autoinflammation/autoimmunity happens, and the myalgic encephalitis patients gets symptomatic, just the same way as RA patients, FMS patients or patients with other autoimmune conditions.

    Autoimmunity/autoinflammation causes (among other things) a myriad of symptoms, neurological and non-neurological. Brain fog, joint pain, malaise, insomnia and so forth. And that's what we call ME.

    Now that's the GIRA. And now, we'll go over to answering the questions.

    How is it transmitted? Endogenous RNA viruses are something we're born with. They are silenced at birth, but may become active sometime throughout life if conditions are "right".
    Why is it increasing so very much in prevalence in the Western world? The reason is that a premise for the virus to become active is that the trillions of bacteria in the gut are dominated by the wrong ones. What determines which bacteria dominate the 30 feet long gut is exactly the same as what determines which bacteria dominate the mouth; and that is what we feed the bacteria. So, in laymen's terms, it's the diet. And that's also the reason why people don't have our western autoimmune diseases in poorer countries.
    Why can such different things as EBV or the flu trigger the disease? All the endogenous RNA virus needs when they immune system is malfunctioning because of overgrowth of the wrong bacteria in the gut is a trigger.

    Other vital questions besides the big three.

    Why is it we get somewhat better with probiotics, antibiotics, antivirals and Rituximab? (they are such different things!)

    With probiotics, what we do is alleviate the gut problems which have risen. What happens is that if we are able to change the gut flora for the better, the body is more able to handle the RNA virus, as very much of immune functioning lies in the gut. The reason why some of the patients get worse so quickly of sugar (within days) is because it temporary changes the gut flora allowing for the wrong bacteria to get a stronger hold.

    With antibiotics, there's more a mixed bag of results. I've heard many stories of people getting worse from certain antibiotics, and what they do is suppress helpful bacteria in the gut, and allows the harmful bacteria to get a stronger hold. But, with other antibiotics, it could really go after the right bacteria, and be very effective at it, doing much more good than harm. What happens than is that patient feels better, because the immune system functions better as a result of less of the wrong bacteria in the 200 trillion cell thing which is our gut content. And on top of that some antibiotics may act as anti inflammatory drugs regardless of the gut pathway of action.

    With (normal) antivirals, many have immune modulating properties (such as also Montoya have proposed is the mechanism of action) and it alleviates symptoms. It might do it via going after a somewhat active co-virus, or directly by immune modulation.

    With Rituximab and other immune modulators you go more directly at the immune dysfunction caused by the RNA virus. Autoantibodies or cytokines could very well be it. Wiping out the pathogenic ones, could work wonders on the patients.

    Why do more women than men get ME? The endogenous RNA virus model would be a parallel to the HERV-W model in MS. While much is uncertain about the gender bias in ME, it seems to affect more women than men. MS affects women two to three times more often than men. The reason for this is the same as what's behind the HERV-W (RNA virus) hypothesis of MS. The genders respond differently, and much of the reason if the differences in the immune system.

    Graphical presentation (just click the link, and the image will pop up).
    http://i42.tinypic.com/nq39m1.jpg

    Note. The links in the text are meant to be sources where one could read more about the general idea of a topic. More like a interesting to read list, than actual sources for evidence.

    Further reading:
    Microbes which defend and define us
    Microbes which may be a reason for disease if they're the wrong ones
    Gut Bacteria Lend a Molecular Hand to Viruses, and aids in making viruses pathogenic
    Of Bugs and Brains: Gut Bacteria Affect Multiple Sclerosis
    Research is actually pointing towards a new gut flora being responsible for giving RNA viruses the possibility to act out.
    Endogenous RNA viruses
    Human Endogenous Retrovirus W (HERV W), thought to play a role in MS
    HERV W and MS, the Perron et al study

    Input is very appreciated. Please do tell me why you think I am wrong or why I am right. What doesn't fit the the hypothesis, and what does.
     
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  2. Tony Mach

    Tony Mach Show me the evidence.

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    You lost me at vaccine. There is no documentation of vaccine involvement in ME/CFS. None. Just take a look at the cases with flu-like onset and you will see that those went from healthy to ill with practically none report getting a vaccine even somewhere close to the onset of their disease.

    Nor is there evidence for "vaccine triggers" in any other major disease, for that matter.

    I think it is nice that you want to understand this disease, but in paraphrasing your motto I would say "If you want to understand the world, try to find evidence."

    I am sorry to be so critical, but I just think it is sloppy to throw in "vaccine triggers" just like that. Read "Osler's Web", read "Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease" by A. Melvin Ramsay. There is some much knowledge there and it is a pity that no one is using it while everybody tries to reinvent the wheel.
     
  3. alex3619

    alex3619 Senior Member

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    Hi Tony Mach, Hep B vaccine is known to trigger ME symptoms. This doesn't mean its causal, but it certainly is an exacerbating factor. The immunological impact of vaccines on CFS (CCC I thnik but I am not sure, might be Fukuda) is either currently being investigated or planned to be investigated at Bond University in my state, Queensland. The findings, whatever they are, will be interesting.

    Bye, Alex
     
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  4. redo

    redo Senior Member

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    The whole reason I put the theory out in the open is to get constructive criticism, so that's just what I was after.

    If vaccines is one of the many triggers or not, wouldn't really mean much to the hypothesis. If it would be a trigger, than it fits in there right along with the other triggers which temporarily gives the immune system more to handle, if it isn't, than it's just to drop it from the hypothesis (as it's not central to the understanding of the disease). I know one large study which points towards vaccines not being one of the triggers, although there are cases which pops up time and time again, such as this just recently. Case stories can't prove anything, so I wiped the vaccine part out of the thread.

    If you have other remarks, I'd appreciate it very much. What do you think about the three big questions? Are there other questions which should be added, and are there some facts which disprove the hypothesis?
     
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  5. Mark

    Mark Former CEO

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    I think you need to be more accurate with your wording if you want to make your point here, because the above statement is demonstrably untrue. For example, here's Charles Shepherd's 2001 report, from the CFIDS Association of America site:

    http://www.cfids.org/archives/2001rr/2001-rr1-article03.asp

    Dr Byron Hyde and others have also reported case series of ME/CFS triggered by vaccination, these reports are easy to find through Google.

    Here's the summary of a 2005 World Health Organisation report into reported links between Hepatitis B vaccination and arthritis and CFS:
    http://www.who.int/vaccine_safety/topics/hepatitisb/Exec_Summ_hepB_arthritis_CFS.pdf

    Its conclusion notes that the evidence of a link is 'largely generated from publicity' and that the two studies that have addressed the question analytically 'used case control designs with limited power and inappropriate analysis'. Finally, it concludes that there is no current evidence either way.

    This is very different from claiming that there is no documentation or evidence of a link; to be more accurate, there is no solid or reliable scientific evidence either way, there are only anecdotal reports dating back at least 20 years. In the absence of any good scientific evidence either way - that is, in the absence of any serious research into this question - and in the presence of many anecdotal reports, continued speculation is inevitable.

    I'm reminded of my reaction when I hear politicans here arguing against an investigation into a subject 'because there is no evidence'. It just makes me more suspicious when I hear people say that an important question should not be investigated or discussed because we don't know the answer to it.

    If serious questions of public interest cannot be seriously and independently investigated, nobody should be surprised by continued speculation and suspicions. Noting that this speculation is 'unscientific' may be accurate but it's also pointless, because if there is no science, anecdotal evidence is the only information available on which people may base their opinions. Insisting that people may not have or may not express an opinion which is not based on scientific evidence, while at the same time continuing to insist that there should be no scientific investigation into the question they are concerned about 'because there is no evidence', is to attempt to close down any discussion of the question at hand.

    So if anybody argues that 'there is no evidence' that vaccines can cause or precipitate ME/CFS, I think it's equally important to note that, despite decades of speculation and anecotal reports, 'there is no evidence' that they do not.

    But this question is off topic from your interesting thread, redo, so apologies if I've just added to that problem; you're right to ask for constructive criticism on the main body of this hypothesis and to note that the vaccine trigger question doesn't have any particular significance for that hypothesis.
     
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  6. xchocoholic

    xchocoholic Senior Member

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    H redo,

    Interesting thread. I'm happy to see more thought provoking theories on me/cfs.

    I noticed you didn't talk about actual gut damage. Bacteria are important but
    based on my recent experiece with h pylori, don't relate to any my symptoms other
    than gi distress, fatigue and possibly an increase in my dysautonomia.

    My other symptoms apear to be from leaky gut, food intolerance, esp gluten. Between 2005 - 2006, before
    addressing gut bacteria my narcolepsy, ataxia, brain zaps, etc vanished. So imho, bacteria weren't
    causing these. My reactions to foods such as gluten is common, esp
    in the autism community.

    Imho, gut damage can't be left out since most of our immune system is in our gut. I just
    recently learned that people who've undergone gastric bypass / aka gut damage will get hyperinsulinemia
    and ?, darn, lost that word .. Lol .. But it means that they can't process oxalates. I have both of these. Oh and celiac disease.

    Tc .. X
     
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  7. floydguy

    floydguy Senior Member

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    Thanks for taking the time to lay out your theory. My suggestion would be to expand on the neurological part of the equation. The mechanism that affects ANS dysfunction. It might be like MS and EBV potentially being the culprit. I like how you keep the model open for different "triggers". I think it's most likely that there are "many roads to Dublin".
     
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  8. redo

    redo Senior Member

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    @xchocoholic. Glad you found it interesting. I am know too little about leaky gut to have a strong opinion on it. But, if LG is a factor, what do you think is causing LG? If it's something which isn't mentioned in the thread, I'd like to know. The role of the gut bacteria in this theory is really that they pave way for the activation of a latent RNA virus, so for the most part the symptoms come as a result of a RNA virus which is active, and for a smaller part from gut microbes directly.

    "I just recently learned that people who've undergone gastric bypass / aka gut damage will get hyperinsulinemia". If you have a source on that I'd like to read it. I find it very fascinating that the syndrome diabetes type 2, almost vanishes after they remove the first part of the gut. And, when they replace the gut bacteria, they get the same results (preliminary trial). But that's really OT, so if you'd like to discuss that we could open another thread.

    Thank you for your input FG. My view of the topic is that autoimmunity leads to neurological problems, so I added a sentence now "Autoimmunity/autoinflammation causes (among other things) a myriad of symptoms, neurological and non-neurological. Brain fog, joint pain, malaise, insomnia and so forth. And that's what we call ME.". In the "other things" I think autoimmunity/autoinflammation causes problems with methylation, depletion of glutathione (like in Richvank's theory), and that's what's causing among other things the exhaustion symptom. But as for not overcomplicating I didn't elaborate on that part.

    About the many roads to dubling part, I think that too, but in the GIRA theory, those roads must all go through the activation of endegenous RNA virus. :Retro wink:
     
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  9. alex3619

    alex3619 Senior Member

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    There is a thread here somewhere which describes a meeting in UK (1992?) at which Behan ? presented. At this was discussed a drug company which ran a clinical trial of a new drug (a vaccine) and were asking for help. 100% of the patients on the vaccine came down with what appeared to be CFS. Some time after this all these kinds of information were classified, and this information was obtained through a freedom of information request and so was heavily redacted. So we don't know how much of this is supposition, which company might have asked for help, nor what kind of vaccine it was. I doubt it went to market, so the general public would have been safe. It would be nice if the UK govt would release the records on this, but there might have been confidentiality issues with the drug company, it does not mean there was a conspiracy, although it is certainly consistent with a conspiracy. Bye, Alex
     
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  10. xchocoholic

    xchocoholic Senior Member

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    Hi redo,

    here's a paper on leaky gut that I think you'll enjoy. I was looking for a basic one on how leaky gut can be caused by nsaids, viruses, celiac disease , etc .. but found this one instead ...

    http://www.lowoxalate.info/papers/mechanisms.html

    googling gastric bypass hyperinsulinemia or gastric bypass oxalates will get you those articles.

    tc ... x
     
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  11. redo

    redo Senior Member

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    Is what you're saying that the Melvin Ramsay book have the whole truth about this topic? I read the book cover now, and I disagree totally about making this sharp distinction between what's triggered the ME. In many, if not most cases of ME it's not easy to know if the patient should have been diagnosed with ME, with FMS, with RA and ME or with atypical MS. It's really much the same, and I think it doesn't make much sense with sharp distinctions. And, I am willing to bet the Mella/Fluge studies wont find a difference at all between how CCC CFS which is triggered by EBV, and CCC CFS which isn't triggered by EBV responds to RTX. I think it's plain wrong.

    A good example of how it seems very much like the same thing, is the situation around the so called post-lyme disease syndrome. After a the infection have resolved, the patients get symptoms which is practically identical with ME. And gulf war syndrome, they also get practically identically the same symptoms. And, of course, CCC CFS which is triggered by giardia, another infection which is able to trigger the all too familiar symptom package. I don't believe that there are four (or more?) syndromes with almost identical symptoms, which are not the one and same thing.

    I really appreciate all constructive criticism, but reading your post again, I think you ought to tone down the cockiness some notches.
     
  12. xchocoholic

    xchocoholic Senior Member

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    Hi redo,

    Before I forget, did you see the article on celiac disease possibly being from commensal bacteria ?
    If not, just google commensal bacteria celiac .. His theory is based on h pylori.

    I just read the first link you gave. Sorry, I missed it .. Lol .. I didn't see insulin levels mentioned in how they measured for blood glucose problems.
    You need a gtt + insulin to diagnose hyperinsulinemia. My other readings were well within the normal range but my insulin was high at the 2 hour mark which drove my glucose down too low. Not looking at insulin levels is why doctors miss this.

    Hyperinsulinemia is what I read was common after a gastric bypass. I think I read that it's because
    their food won't be broken down properly anymore. This isn't diabetes ..

    Tc .. X
     
  13. merylg

    merylg Senior Member

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  14. merylg

    merylg Senior Member

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    Hi mark,

    It's interesting that Charles Shepherd, MD mentions Thimerosal hypersensitivity.

    If people want to find out if they have been sensitized to Thimerosal/Thiomersal, the preservative in one of the early Hep B vaccines of the 1990s, they can have a 3-day Patch Test for Delayed Hypersensitivities to chemicals. This is often performed at a Skin & Cancer Clinic. The result is read and interpreted by a Dermatologist/Allergist/Physician.

    I tested POSITIVE for this hypersensitivity. The doctor had no hesitation in saying that as a health worker it would have been due to the Hep B vaccine I was given. If I remember correctly, & there are records, it was the second earliest vaccine produced.

    I only had this test because we were investigating my general chemical sensitivities and sources of contact allergies.
     
  15. merylg

    merylg Senior Member

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  16. redo

    redo Senior Member

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    Insteresting xchocoholic. I have always thought the gut has got too little attention throughout medical history. It's like professor Borody from Australia says, "nobody wants to be the guy who's examining the poo". And when the brightest minds don't go into research on that field, and many of those who research the gut rather looks at the organ than the content, we know too little of what it does, and how it effects us. Although nothing is certain when it comes to this, it wouldn't surprise me one bit, if we find out that gut bacteria are behind diseases with unknown origin today. Especially illnesses in the food intolerance realm.

    About the first link ("Type 2 diabetes (...) gastric bypass"), it was about diabetes type 2 (insulin resistance) vanishing in many patients after the first part of the intestines are removed. It's not about hyperinsulinemia. I have emailed some back and forth with the author, and the results come really quick (within days). So, combined with the dutch study, it has got me thinking that perhaps the bacteria inside the gut controls more than what we know with today's knowledge. The GIRA theory is really a working theory to use that expression, molding it as more info comes along.

    Thanks for the link my the way. The LG seems to be a parallel with the BBB, only separating the gut and blood. I'll dig deeper into later.
     
  17. redo

    redo Senior Member

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    Hi Meryl,

    Thank you for the links. My thoughts on the genetic predisposition on a general level is that those who are predisposed will more easily get ill when the other factors are there (wrong gut microbes, some sort of trigger which sets off a endogenous RNA virus). If you have insight on HLA-DRE3 and HLA-B8 and how that may or may not fit with the GIRA theory, I'd appreciate it if you'd let me know! :Retro smile:

    This excerpt really confirmed my impressions from elsewhere.

    Washington University in St Louis, who is engaged in a project to catalogue the human biome, the microbial communities that live in or on a human body. These microorganisms consist not only of bacteria, but viruses, protozoa, parasites and worms. At this point relatively little is known about the vast variety of these microflora, about the function and role that they play in disease states and in health.

    Fascinating reading Meryl.
     
  18. Marg

    Marg Senior Member

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    I had all the vaccines required for living in Europe for 5 years when my husband was in the military. They were kept up even after we returned in case we were going back. I also develped allergies upon returning to the US. I was allergic to everything outside, had 5 kinds of grasses, trees and so on in each arm every two weeks. I did that for seven years, well I did it until I was too sick to go. I am sure it was a a major trigger for me. That fall I did get a flu shot and in two weeks was in bed. I did not want to get it but scare tactics were used. I did learn that there were some deaths that year but not many learned about it. That was in 1993. I have not had an injection of any kind since then. I take a homeopathic each year for the flu as does my husband. No flu since staring that in 1994.

    I am doing quite well, still not sleeping the way I would like too and still leg pain but less and that was my first and always worst symptom. I know Imunovir and Equilibrant helped me a lot. Dr. Klimas had me 50% better in a year on the protocol she chose for me. I am better than that now but I do not over do very often but have and no PE but no touble so far. POTS is not noticeable but I do drink a lot of water and electrolyte drinks.

    I have read sleep and leg pain are the last to go, hope so.

    My thinking is that all those injections over the years totally confused the immune system at least for me. We are all different and I believe different triggers.
     
  19. redo

    redo Senior Member

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    I agree. There are various ways ME can be triggered. I really think that with vaccines, it goes well over 99% of the time, but a vaccine, just like a flu or a food poisoning is a temporary stressor for the immune system (that's what vaccines are built for; kick starting an immune response), and I think that such temporary stressors are enough to trigger a latent endogenous virus if the conditions are "right".
     
  20. redo

    redo Senior Member

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    Here's some excerpts from the HERV W article in the further reading part. I recommend everyone to read it.

    I think that if Lipkin et al. finds something, the only thing which would make sense would be if it where to be endogenous. If not, than there had to be not only a virus of which there is no clear way of knowing how it infects (with other viruses, such as HIV, they knew pretty much how it was transmitted before it was identified) - and, there would be no reasonable explanation as to why the virus is only rampant in the West.
     

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