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HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

Discussion in 'Latest ME/CFS Research' started by Gemini, Feb 21, 2013.

  1. Gemini

    Gemini Senior Member

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    New Komaroff/Huber study mentioned in another thread:

    http://www.ncbi.nlm.nih.gov/pubmed/23408682

    Small study, 39 patients and 9 controls, blood and saliva tested.

    Conclusions. We fail to demonstrate a difference in HERV-K18 env transcripts, HHV-6 viral copy number, and HHV-7 viral copy number between CFS patients and healthy controls. Our data do not support the hypothesis of reactivation of HHV-6 or HHV-7 in CFS.
     
  2. Not a great study really.
    The unique cycles of reactivation of HHV6 (or whatever other neurogenic virus is likely to be the culprit) do not happen on a day to day basis. The reason why this research is so difficult is that testing has to be done at the appropriate time to catch any spillover especially if it is from the CNS and not the white cells. A study using CSF of CFS patients vs. controls might be more interesting. Or alternatively maybe serial (eg weekly) bloods. If these still showed no diffterence than we obviously would need to put our thinking caps on again.
     
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  3. Gemini

    Gemini Senior Member

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    Dr. Wilcox, you highlight such a key factor, reactivation patterns over time.

    It's interesting Japanese HHV-6/HHV-7 studies show work-induced fatigue causes reactivation, i.e.,activity is a factor. Haven't read the entire Komaroff/Huber paper to know if they measured activity/exercise before their blood draws.

    "Exercise immunology" researchers report exercise causes immune suppression. They study elite athletes & military personnel who are in excellent health. Given the activity-induced flares in ME/CFS wouldn't it be interesting to compare immune suppression/virus reactivation patterns of athletes to ME/CFS patients using serial blood draws as you suggest?
     
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  4. I work as a GP and I am starting to take HHV-6 PCR snapshots when patients present to me with ~2 wks of soft neurological signs of reactivation. I picked a significant viral load up last week on a 35 year old lady who had the previous year sustained a moderately severe but transient carotid arteritis, presumably also from HHV-6 (via the glossopharyngeal nerve). Yes serial testing is the way to go and I guess the costs of the tests are getting cheaper each year so to get a reasonably good diagnosis we should be reasonably bullish on this I guess..
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr Jon Wilcox

    Slightly off topic, but how would you compare the rates of detection of HHV-6 by PCR versus antibodies? I'd guess you would miss some in PCR unless you did regular serial testing but would also miss quite a few by antibody testing as many of us have compromised immune systems that may not be generating antibodies well.

    Thanks for your input,
    Sushi
     
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  6. Sasha

    Sasha Fine, thank you

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    That's very interesting that you're even testing for HHV-6. I'm in the UK, have had an HHV-6 test done privately via the US which came back with very high HHV-6 IgG antibody titres (1:1280) and am trying to get anti-viral (Valcyte) treatment on the UK NHS. My GP isn't convinced that HHV-6 causes problems and should be treated. In fact, NHS Choices, which is a pretty comprehensive NHS website for patients to find out about their illnesses and treatments, doesn't mention HHV-6 at all:

    http://www.nhs.uk/Pages/HomePage.aspx

    Are high levels of HHV-6 well-accepted in NZ as requiring treatment?
     
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  7. Re carotid arteritis (aka. carotidynia) - If anyone is interested the study in the American Jnl of Neuroradiology from way back was excellent. Dr Burton knew something was going on with these army personnel and their families.
    http://www.ajnr.org/content/21/4/766.full. It was only my hunch that this was a perineural component of the CFS 'constellation', arising from the brainstem (IX) cranial nerve nucleus. In 1998 I have personally had it twice - on both arteries and within 6 weeks thus the assumption that it was CNS based around the same time as my son sustained a primary MS like illness due to proven HHV-6. Interesting indeed. I have never done my own PCR's but I do keep a supply of antivirals at home.
     
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  8. No HHV-6 is still fringey
    I started doing a lot of IgG's on patients (probably for my own selfish curiosity) back in 1998 after my son seroconverted following an MS like illness but the ageing head clinical virologist at Auckland Hospital decided they should not be doing serology IgG's for ubiquitous viruses and stopped GP's doing them.
    Sigh.
    But this is now 2013 and at least they dont seem to mind us requesting PCR's but I have to be careful I dont blow their budget or they will stop those too. I do website reviews for NZ Doctor magazine and the next review is on the US HHV6 Foundation website and will be due out in 2 weeks.
     
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  9.  
  10. America is streets ahead on this compared to the conservative "British Commonwealth" approach to medicine - ie. "if it isn't serious treat it and investigate it conservatively"
     
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  11. I am trying to work on the assumption that judicious and timely use of high dose 800 mg five times daily of aciclovir might be reasonably effective for reactivations for 1-2 weeks. It is dirt cheap here in NZ and Valcyte is obscenely expensive. Most of our patients have no knowledge of HHV-6 and it is only if I show them the PCR results that they do some homewoprk. They dont all have 'CDC defined CFS' either.
     
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  12. Sasha

    Sasha Fine, thank you

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    Thanks - will we be able to see your review online? I'd be interested to see both what you say and what sort of response you get. I've been referred to an infectious diseases consultant and I'd like to know what arguments I'm likely to be up against (apart from just the fact that there are no published RCTs on Valcyte in high-HHV-6 patients with ME).
     
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  13. I think the higher IgG levels eg 1:1024 sort of stuff is highly suggestive of significant reactivations. I did a big batch in 1998 on patients with unusual malaIise or soft neurology and most of them came back at 1:64 - which were probably not significantly affected by HHV-6, even though they (obviously as with 90+ percent) probably had the virus in their system. Quantitative serology is helpful but much of this stuff now comes back simply as positive or negative results which is unhelpful.
     
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  14. Sasha

    Sasha Fine, thank you

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    I think there comes a point, years into chronic and severe disease, even if it's not immediately life-threatening, that we need to start taking risks and spending money on testing. It would make more sense, of course, to spend a bit on RCTs to reap the investment in more effective treatment and get people back to work early in their lives.
     
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  15. Also PCR tests give us actual viral loads eg 2.3 log. Ten years ago we were just given a positive or negative result. So vira loads should be diagnostically helpful if we are doing monitoring of symptom reactivations.
     
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  16. If Roche had half a brain they would plunge their price of Valcyte 2 years ahead of the patemt expiry to suck off some profits from the CFS industry. They clearly dont have half a brain. The patent expires in 2015.
     
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  17. Sushi if you show the ID consultant a few HHV-6 papers they should not brush you off - there are heaps out there which do not need subscriptions. Even abstracts can suffice but the full papers are better. They cannot keep up with everything. Google HHV-6 and Encephalitis for example. I have to go to work now its almost 8.30am here.
     
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  18. Sasha

    Sasha Fine, thank you

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    Maybe it's because we haven't got a CFS industry. In the UK, the NICE guidelines on treatment for CFS specifically rule out treatment with anti-virals. Although a few practitioners in the US are using Valcyte for their HHV-6 high-titre patients, I have the impression there aren't many such clinicians (I could easily be wrong).

    Maybe an upside is that when Valcyte goes generic and gets cheaper, it will be cheaper to run a trial and cheaper for the NHS and other providers to take a risk by prescribing it.
     
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  19. Sasha

    Sasha Fine, thank you

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    I don't have encephalitis - just ICC/CCC ME (I'm assuming they wouldn't consider that real encephalomyelitis, even).

    Anyway, thanks for talking - 9:30pm here!
     
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks, my doctor recently ordered HHV-6 from Redlabs in Brussels and it looks like a PCR test. I had an antibody test a few years ago that was supposedly negative, but it was from another lab. So, I am waiting for the results.

    Best,
    Sushi
     
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