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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Chronic fatigue syndrome after Giardia enteritis (Naess et al., 2012)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 9, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

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    I don't have time to do this in depth, but the triggering factors are primarily infections - CMV, EBV, (HHV-6), Influenza (including the recent H1N1 strain), Q-Fever, Rickettsia, Borreliosis, Borna disease virus, Mycoplasma, Hepatitis C.
    I think that Fibromyalgia, Multiple Chemical sensitivity etc are separate diseases.
     
  2. Guido den Broeder

    Guido den Broeder *****

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    Protein signature, cytokine expression, xenon SPECT or NIRS, RNAse L fragmentation - take your pick.
     
  3. richvank

    richvank Senior Member

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    Hi, all.

    I wonder how many of the people in the study who had giardia infection were treated with metronidazole (Flagyl). That drug depletes glutathione, and I think that it might contribute to the onset of ME/CFS in people who have the genetic predisposition.

    Best regards,

    Rich
     
  4. medfeb

    medfeb Senior Member

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    Rich,

    Thanks for connecting some dots!

    My son picked up Giardia while backpacking in Asia. He was treated with Tindimax for 3 days then with Metronidazole for 7 days. Two weeks later, he literally woke up one morning with what we now know is ME/CFS

    Is Health Diagnostics and Research Institute still the best place to get testing? Regarding the underlying genetic predisposition - is there a test for that at this point and if so, is there a clinical value in knowing what it is - e.g. improved treatment recommendations?
     
  5. redo

    redo Senior Member

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    Can you dig up references for those? Or, at least for those you find strongest tied to ME as possible triggers.
     
  6. oceanblue

    oceanblue Senior Member

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    Any validated ones (replicated on an independent sample)? A reliable test for the illness is the holy grail of ME research; I wasn't aware anyone had found it.
     
  7. Hanna

    Hanna Senior Member

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    Hi Rich,

    Wanted just to add my own experiment about use of Flagyl and beginning of ME/CFS. Though it was for treating Amoebiasys, I had 6 courses of Flagyl in 1997-98 and developped ME/CFS right from June 1998 (sudden onset with EBV found). Never though Flagyl could be in the picture too. But those are facts.
    Thank you again for your insights,
    Best,
    Hanna
     
  8. medfeb

    medfeb Senior Member

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    Redo

    Maybe this will help?

    The proposal to reclassify CFS as a neurological disease submitted by the Coalition 4 ME/CFS contains an Appendix B that lists the triggering pathogens that can cause ME/CFS. The intent of that section of the proposal was to demonstrate that both viral and non-viral pathogens could trigger the illness. So its not an exhaustive list of potential triggers but it does contain references to some of the studies done and other papers including a summary of the 2009 IACFS/ME by Vernon who discussed the range of infectious triggers covered by various presenters:
    • Giardia lambia (Eva Stormorken, RN, University of Oslo, Norway)
    • Coxiella burnetii (Andrew Lloyd, MD, University of New South Wales, Australia)
    • Parvovirus B19 (Jonathan Kerr, MD, PhD, St. Georges University of London, England)
    • Parvovirus B19 and herpesviruses (Kenny DeMeirleir, MD, PhD, University of Brussels, Belgium)
    • Mammalian viruses (Judy Mikovits, PhD, Whittemore Peterson Institute, USA)
    • HHV-6 and -7 (Modra Murovska, MD, PHD, Riga Stradins University, Latvia)
    • Epstein-Barr virus (EBV), CMV and HHV-6 (Barbara Cameron, PhD, University of New South Wales, Australia)
    • Enteroviruses, EBV, Chlamydia pneumoniae, coxiella burnetii and parvovirus B19 (Lihan Zhang, St. Georges University of London, England)

    The link to the ICD CFS reclassification proposal is here.

    ALso, Dr. Komaroff's 2011 publication "ROle of Infection and Neurological Dysfunction in Chronic Fatigue Syndrome" discussed the different infectious triggers that have been associated with ME/CFS - discussed EBV, Ross RIver virus, HHV-6, Coxiella Burnetti, and enteroviruses at least . Link to the abstract is here

    Regarding vaccines - I've often wondered about that connection as well ever since I saw Shoenfeld's article "ASIA e Autoimmune/inflammatory syndrome induced by adjuvant". He mentions the link between vaccines and CFS and provides additional references to work he has done which I haven't looked at.

    "Previously both infectious agents and vaccines have been reported to precede the development of chronic fatigue syndrome (CFS) and fibromyalgia, and a role for Th-2 mediated immune response was suggested [12,41,42]"
     
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  9. oceanblue

    oceanblue Senior Member

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    I certainly agree that the interview by a chronic fatigue specialist and neurologist is better than that Wessely study managed.

    However, I'm wary of assuming they did any examinations/tests they don't mention: that's what the 'Methods' section is for (particularly as their implementation of Fukuda was challenged by reviewers). Maybe it's worth contacting the authors to clarify re Fukuda tests & physical examination? Nb it was through the 'Methods' description that we know the Wessely diagnosis was suspect.

    Case definitions (for any illness) specify all the steps required for diagnosis; if some of the steps are omitted then the diagnoses are suspect, regardless of any failures by other studies (the Dubbo studies didn't explicity mention the requisite lab tests).
     
  10. oceanblue

    oceanblue Senior Member

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    I've just looked at the Dubbo study (EBV, Ross River Virus & C Burnettii) and fatigue was high for the PIFS cohort from the off. While it's certainly possilbe the delayed fatigue was down to the initial Giardia infection it's also possible it's not, and I was trying to establish 'what do we really know?', as opposed to what's plausible.
     
  11. Dolphin

    Dolphin Senior Member

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    Oceanblue, it is good you draw attention to specific issues which can be missed.
    As I say, I do imagine that quite a few Fukuda studies haven't involved all the stages you've highlighted but I haven't consciously been looking to notice ones that didn't do all the stages.
     
  12. richvank

    richvank Senior Member

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    Hi, medfeb.

    Yes, that's the place. Yes, Amy Yasko offers a genetics panel at www.holisticheal.com It can be beneficial if a person intends to do the full Yasko treatment program. On the other hand, the Health Diagnostics methylation pathways panel will give direct information about the status of the biochemistry, and it may be all that is needed. I think there are different opinions about this.

    Best regards,

    Rich
     
  13. oceanblue

    oceanblue Senior Member

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    Commentary on Giardiasis outbreak and Post Infectious Fatigue/CFS

    Initial outbreak

    Giardia lamblia (syn. intestinalis or duodenalis) is an important cause of gastrointestinal illness throughout the world [1,2], particularly in developing countries. The most common identified non-human source of infection has been through drinking water [4-6].

    In Norway, cases are normally rare and most come from those who have visited or are from areas where it is endemic. However, in autumn 2004 there was an outbreak in the second city of Bergen with a total 1,300 cases of laboratory-confirmed cases of Giardia (vs the norm of 1-2 cases annually); there were probably as many cases again that weren't laboratory confirmed. There was a predominance of adults in the 2029-year age-group, representing 47 % of the cases, with few cases in children or the elderly, but this largely reflected the demographics of the parts of Bergen most affected.

    The overall 'attack rate' was only 1.5%, and drinking more than 5 glasses tap water at home (OR 5.9, 95% CI 1.7 21) was a risk factor for infection, suggesting contaminating levels of Giardia in water were generally quite low. Leaking sewage pipes combined with insufficient water treatment was the likely cause of the outbreak (normal chlorine treatment doesn't kill Giardia spores).

    Post infectious Fatigue and Intestinal problems

    A questionnaire mailed to all lab-confrimed cases 2 years after the outbreak found fatigue was reported by 41% and abdominal symptoms by 38%, with a strong association between these two symptoms; significantly they also found (in a sub-sample) that symptoms were not due to chronic infection.

    The 2-year follow-up study was criticised for not using validated questionnaires and for lacking a control group and a later 3-year follow-up study used a matched control group and validated questionnaires. It found chronic fatigue in 46% (controls 12%) giving an adjusted Relative Risk (RR) of 4.0 and Irritable Bowel Syndrome (IBS) prevalence of 46% (control 14%, RR 3.4). IBS and chronic fatigue were associated and the Relative Risk for having both fatigue and IBS was 6.8.

    Acute illness severity link to fatigue?

    The 2-year follow-up study also found a link between protracted and severe Giardiasis and subsequent fatigue and abdominal symptoms. This is particularly interesting as it tallies with the Dubbo Study findings that acute sickness was the strongest predictor of post infectious fatigue. In particular, Giarida study found that retrospective reports of malaise at the time of the initial infection, and more than one treatment course were significantly associated with fatigue. Unfortunately, retrospective reports of symptoms are not very reliable. Similarly, time off work/education might be due in part to post-infectious fatigue, not the initial infection in which case the correlation with post-infectous fatigue reveals little. Nonetheless, the correlation with more than one treatment course, which is probably a good measure of protracted Gardiasis infection, and fatigue remains. These results are consistent with a role for severe/protracted initial infection in subsequent post-infectious fatigue, but are hardly conclusive.

    Giardia and post-infectious CFS

    And so to the current study, which found a high rate of CFS developing among those with lab-confirmed initial Giardiasis. The authors state 5% as the lower limit of prevalence, which is very high, particularly as the patients had been ill for a mean of 2.7 years. In prospective studies of glandular fever it's usually around 10% after just six months, falling to maybe 6% after one year. This adds yet another infection to the list of agents that can trigger Post-Infectous CFS. Others include EBV, Ross River Virus, C Burnettii, and viral Meningitis. Giardia is particularly interesting as the first Protozoan (large single-celled organism, like amoeba) to be linked to CFS (a study from 1992 also links Giardia to CFS).

    Caveats

    As ever, there are some problems with the study, though none are fatal, in my opinion. First, the authors only diagnosed CFS cases from amongst those referred by general physicians or attending a particular medical centre. Disappointingly, they didn't try to sample other people from the original Giardiasis outbreak cohort as there are very likely to be additional CFS cases in this group. That's the basis for the claim that 5% is the lower limit for CFS post-Giardiasis.

    Perhaps more significantly, the authors stated they used the 1994 Fukuda CFS definition for diagnosis yet they failed to carry out all the diagnostic steps required by the Fukuda paper. Normally, I'm not too fussed if the implementation isn't perfect, if the CFS starts with an infectious episode. However, in this study the majority of patients (58%) reported that fatigue started months after the acute onset of giardiasis (which could include over a year after onset). In the Dubbo study, fatigue in CFS cases started at onset of the initial, triggering infection. So both the incomplete diagnosis and issue of late onset fatigue make it possible for critics like reviewer Peter White to claim these cases are unrelated to the initial giardiasis infection.

    In mitigation, the authors did state they excluded any cases where the giardiasis symptoms had stopped before the fatigue started, and the 3 year follow-up study, above, robustly shows that fatigue levels generally in those infected are much higher than in matched controls.

    Nonetheless, if we conservatively only count CFS cases where the onset of fatigue was within weeks of the initial giardiasis that still gives a minimum rate of 1.9% CFS cases 2.7 years post Giardia infection and that's high enough to show a strong link between Giardia infection and subsequent CFS. In reality, a good number of those later onset cases are also likely to be linked to the initial infection, and there will almost certainly be CFS cases amongst infected individuals not followed up.
     
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  14. LaurelW

    LaurelW Senior Member

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    I used to go to an acupuncturist who said she had seen a lot of cases of people getting mono after a bout of giardiasis. She attributed this to the common use of Flagyl for the giardia, but who knows? I myself have had giardia, mono, and CFS, but not in close succession.
     
  15. Dolphin

    Dolphin Senior Member

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    Well done and thanks for putting all that together, oceanblue.
    Might be worth posting the same info in your blog (up to yourself).
     
  16. oceanblue

    oceanblue Senior Member

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    Thanks. Will probably tweak into a blog when I have a little more energy.
     
  17. redo

    redo Senior Member

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    Thanks a lot medfeb! I am worse at the moment, hence the late reply.
     

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