Bob
Senior Member
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- England (south coast)
She is!
Oops! That's what I meant to say, of course!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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She is!
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.
I agree - I'm facing exactly this battle at the moment with the NHS - huge antibody titres to HHV-6 but negative by PCR.
HHV-6 is never found in plasma or serum unless there is an active infection. However, the absence of HHV-6 DNA in the plasma/serum does not mean that there is no active infection. HHV-6 does not circulate in the plasma/serum except during the initial infection and transiently during an acute infection.
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):
http://hhv-6foundation.org/patients/hhv-6-testing-for-patients
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.
Smart move, Sasha. 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.
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!
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.
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
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.