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NIH awards £1m grant to UK Biobank

Discussion in 'General ME/CFS News' started by John Mac, Jun 28, 2013.

  1. Bob

    Bob

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    Oops! :oops: That's what I meant to say, of course! :)
     
  2. SOC

    SOC Senior Member

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    Herpesviruses may or may not be causal in ME/CFS, but chronic (active or frequently reactivating) infection could easily be the cause of many of our symptoms. They can also affect immune function.

    We have suffered for many years from the assumption on the part of medical authorities that herpesviruses cannot be chronic -- that our immune systems handle it. Herpesvirus test interpretation is colored by assumptions based on healthy people, ie that a high IGG titre only indicates a past infection. That assumption collapses if the patient has immune dysfunction. Since doctors are working under the assumption that only transplant patients and HIV patients have immune dysfunction, and ME/CFS patients are neither, our high titres don't mean anything -- according to their assumptions. Deadly wrong assumptions, it's beginning to appear.

    Clinical evidence is showing substantial improvement in functionality (in a subset of ME/CFS patients) with antiherpetic medications (Valcyte, Valtrex, Famvir). This suggests that herpesviruses may play a part in our illness, so testing for them seems like a smart move to me. Also, since herpesviruses can go latent and reactivate, testing at the wrong time could easily miss reactivations leading to the false conclusion that the patient is not struggling with active herpesvirus infections. Testing at multiple time points might show up a frequent reactivation pattern.

    It's too bad that they aren't also testing for HSV-1 (HHV1) and herpes zoster/chicken pox (HHV3). It's an economy thing, I suppose. The infections most noticed so far in ME/CFS patients are EBV (HHV4), CMV(HHV5), and HHV6, so I guess they're focusing on those for now.

    Proving that a large subset of ME/CFS patients in the UK are suffering from chronic/reactivating herpesvirus infections could lead to the availability of antiherpetic meds under the NHS. That could be huge for UK patients --and helpful for patients worldwide as well.
     
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  3. Sasha

    Sasha Fine, thank you

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    I agree - I'm facing exactly this battle at the moment with the NHS - huge antibody titres to HHV-6 but negative by PCR.
     
  4. SOC

    SOC Senior Member

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    Do you know what kind of PCR test they did? If they tested plasma or serum, the test is not reliable. Only a quantitative PCR test on whole blood can tell the difference between latent and active infections, according to the HHV-6 Foundation.

    I'm not up on the details, but you can read up on testing for HHV-6 at the HHV-6 Foundation website.
    Here's one detail you may find interesting about one type of PCR test (my bolding):
     
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  5. Sasha

    Sasha Fine, thank you

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    Hi SOC - it was plasma. I handed over a copy of exactly that info from the HHV-6 Foundation and I'm being retested but I don't know if they'll just use the same test (I was pushing the false negative angle). I'm hoping the info I gave will be referred up to their virologist. Famous last words, possibly.
     
  6. SOC

    SOC Senior Member

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    Smart move, Sasha. :thumbsup: Rerunning the same test again would be stupid on their part. That test can't tell what you need to know. Albert Einstein comes to mind here. "Insanity: Doing the same thing over and over and expecting different results."

    Hopefully they'll do the quantitative test on whole blood this time. I will wish you good luck, although I don't know whether I wish you come up active hhv6 positive or negative. ;) I wouldn't wish chronic hhv6 on anyone, but at least there's a treatment. Geez, this is one mind-boggling illness.
     
  7. Sasha

    Sasha Fine, thank you

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    Thanks, SOC - I'd rather have a clear positive because if they run a test and it comes up negative, I won't trust it. I've already got whatever I've got so all a positive test can do is get me the appropriate treatment! :cool:
     
  8. SOC

    SOC Senior Member

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    Well then, I'll wish you finally get a positive result! o_O At least you'd finally get your long-overdue treatment. And perhaps you'll have educated a few physicians, which can only help the ME/CFS community.

    PS: You should send your docs a bill for teaching them what the proper tests are for active HHV6 infections. :rofl::rofl:
     
    Sasha likes this.
  9. akrasia

    akrasia Senior Member

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    And from the M.E. Patient's Great Book of Irony:

    Samples for the ME/CFS Biobank are obtained via NHS primary care networks and other sources, and are then processed and securely stored at the University College London/Royal Free Hospital Biobank.


    Great and mysterious are the ways of the NIH: one hand giveth and the other stalleth.
     
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  10. Firestormm

    Firestormm Guest

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    not quite understanding of your point. This is the Biobank where ME samples are stored, are you referring to the Royal Free outbreak perhaps? Indeed I can see that as perhaps ironic :)
     
  11. akrasia

    akrasia Senior Member

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    Yes, Firestormm, I was referring to the Royal Free outbreak and the competing narratives it spawned: Ramsey and the description of M.E. on the one hand and the McEvedy and Beard assertion that it was simply mass hysteria. Move along nothing to see here.

    An idle thought from a thoroughly poached akrasia.
     
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  12. Firestormm

    Firestormm Guest

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    Nah. Blame me for being the slow fool on this one Akrasia :) One of those 'darn I know what she meant!' after hitting the 'exit forum' key moments I am afraid :)

    Yes. It is very ironic. More so if they discover something of note. Then we can shove two fingers up to the buggars. Mind you they'd only plead ignorance :snigger:
     

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