• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New NIH page - Viruses Found in Chronic Fatigue Syndrome Patients

dannybex

Senior Member
Messages
3,561
Location
Seattle
BRAVO!

Thanks Shrewsbury.

db.

p.s. It is interesting that when they retested 8 patients 15 years later, one of them no longer tested positive. ???
 

Sunshine

Senior Member
Messages
208
Location
UK
Correct, however this could be a fault with the test rather than no XMRV present (e.g.a false negative).

The WPI PCR XMRV test took 4 to 5 goes to find people positive, for example. Is the Alter/Lo method as sensitive as the WPI or better?
We don't know. Was the person negative for XMRV tested also by virus culture method? That would be very interesting to know actually.

We still don't have a FDA approved standardised test or know where the virus reservoir is. It may migrate into tissue (s). It may be expressed at levels so low it cannot be detected by current assays in some people. (From memory XMRV is approximately 1 in 1 million cells infected, and HIV is 1 in 1,000 cells infected)

NB: In Ila Singh's research monkeys injected with XMRV, the virus also escaped from the blood and could not be detected.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
None of the eight patients had recovered. Lo and Alter quite specifically said in the press conference that with a virus in such low copy numbers, the same person could test positive one day and negative the next. That one patient who was "negative" on retest may very well turn up positive on subsequent testing, or with testing using other methodologies.
 

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
This is more like it. Good post Shrewsbury.

Did anyone see the word 'retrovirus' mentioned though - even just once?

Its good that they have referred to the need to check the blood supply, albeit cautiously.

Its great that they have vocally bolstered the WPI in this way too.

But - if I see one more photo of a vaguely tired, healthy person, with their hand to their brow, I'll .. :tear: with frustration. If even the NIH don't 'get it', after their own positive study - who will?

(ps This comment posted by me on UK forum but reposted here as relevant.)
 

helsbells

Senior Member
Messages
302
Location
UK
This is more like it. Good post Shrewsbury.

But - if I see one more photo of a vaguely tired, healthy person, with their hand to their brow, I'll .. :tear: with frustration. If even the NIH don't 'get it', after their own positive study - who will?

It does rather seem to be our lot in life doesn't it, along with our library of dumb quotations we all have by of responses by friends and acquaintances over the years, or even worse by doctors :Retro mad:
Great news all the same.
 

Sunshine

Senior Member
Messages
208
Location
UK
Regarding the media. The obvious phobia people have over ME/CFS people being legitimately sick and given equal respect is linked to this obsession with 'dumbed down' reporting in the media. It's in a way, rather horribly like homophobia. (Many people with pre-set ideas on sexual variations begrudgingly accept nowadays they are meant to give gays and lesbians equal rights in employment and in wider society in general due to laws on discrimination).

Humans seem to be often mean and 'piss taking', for the sheer sake of it. You could argue this is why these sorts become journalists or work in other positions of power.
 

helsbells

Senior Member
Messages
302
Location
UK
Regarding the media. The obvious phobia people have over ME/CFS people being legitimately sick and given equal respect is linked to this obsession with 'dumbed down' reporting in the media. It's in a way, rather horribly like homophobia. (Many people with pre-set ideas on sexual variations begrudgingly accept nowadays they are meant to give gays and lesbians equal rights in employment and in wider society in general due to laws on discrimination).

Humans seem to be often mean and 'piss taking', for the sheer sake of it. You could argue this is why these sorts become journalists or work in other positions of power.

My partner and I were actually talking about how dumbed down things are getting here are in the UK - It seems much worse than I remember it but don't know if thats because I didn't have the insights I have now, then. Increasingly even the braodsheets just employ comments and columnists clammering to be the cleverest, whittiest they can be all the while commenting on a smaller and smaller pool of news cos the investigative reporting is going by the wayside. BBC news is like watching blue peter so I suppose well person with head in hands is par for the course.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks for your explanations Sunshine and UrbanTravels regarding the negative patient. It sure will be interesting to see how this plays out, especially since XMRV seems to act in such a different manner in prostate cancer...

So many questions... :)