• 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.

Are you convinced?

ARE YOU CONVINCED THAT CFS IS CAUSED BY XMRV?


  • Total voters
    12
  • Poll closed .

SaveMe

Senior Member
Messages
421
Location
the city
I say nay only because other studies have conflicting evidence.

Researchers need to start looking in the vaccines for clues.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
read on:Sign giggle:

I can't vote cause I don't think it is so simple. If the question were "Are you convinced that XMRV is 'a player?'" I'd vote yes. But how and what it is doing, is not clear yet. I am XMRV positive by culture and feel sure from different treatments that I have tried and how I have responded that its role is significant, but I doubt if there is a single cause. More like a toxic soup with some kind of domino effect.

At the same time I do think that we probably won't get well without dealing with XMRV as it's effect on the immune system is pretty clear.

Sushi
 

SaveMe

Senior Member
Messages
421
Location
the city
I can't vote cause I don't think it is so simple. If the question were "Are you convinced that XMRV is 'a player?'" I'd vote yes. But how and what it is doing, is not clear yet. I am XMRV positive by culture and feel sure from different treatments that I have tried and how I have responded that its role is significant, but I doubt if there is a single cause. More like a toxic soup with some kind of domino effect.

At the same time I do think that we probably won't get well without dealing with XMRV as it's effect on the immune system is pretty clear.

Sushi
thanks for your input, sushi
you mention a good pt. i should have clarified the Q
anything helping xmrv?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
thanks for your input, sushi
you mention a good pt. i should have clarified the Q
anything helping xmrv?

Couple of things: a remedy meant for viruses, and now more significantly I am thinking and hoping that GcMAF is helping. I'm getting a lot of die-off symptoms and similar response to others who have gotten "functionally well."

Sushi
 

SaveMe

Senior Member
Messages
421
Location
the city
Couple of things: a remedy meant for viruses, and now more significantly I am thinking and hoping that GcMAF is helping. I'm getting a lot of die-off symptoms and similar response to others who have gotten "functionally well."

Sushi

sushi you say "die off" what do you mean? please
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
sushi you say "die off" what do you mean? please

Die Off is the everyday term for herxheimer reaction. (http://en.wikipedia.org/wiki/Herxheimer_reaction). Basically your detox system get overwhelmed with dead-critter-bodies, and you feel like crap. In the case of XMRV, it may well be the retrovirus envelope, which is known to be toxic.

Lots of fun stuff to learn here! :eek:

Sushi
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, I am not convinced that XMRV causes CFS. How can I be, there is not enough evidence!

What I am convinced of, with data as of today, is that XMRV (and related viruses) are the leading hypothetical contenders for a cause. It is my current working hypothesis. It has to be investigated, to prove it or disprove it. Only quality well funded research can do that. So I support XMRV research - how could I not?

Bye
Alex
 

SaveMe

Senior Member
Messages
421
Location
the city
Hi, I am not convinced that XMRV causes CFS. How can I be, there is not enough evidence!

What I am convinced of, with data as of today, is that XMRV (and related viruses) are the leading hypothetical contenders for a cause. It is my current working hypothesis. It has to be investigated, to prove it or disprove it. Only quality well funded research can do that. So I support XMRV research - how could I not?

Bye
Alex

Okay, but people are getting tested for it and treating it. I think we are at the point in science to confirm 2 characteristics of CFS; that is, 1. causation is viral 2. virus malfunctions immune system.

Trials on Valganciclovir at Stanford confirm this. Most (9/12) people with CFS in the trial are having significant reduction in symptoms. I wonder why? Because CFS is caused by a RETRO virus. case closed. Heavy metals, toxins, pesticides, blah blah blah....
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi SaveMe,

This I will concede: ME/CFS is probably from retroviruses, and it probably includes XMRV. There is no certainty in science until the studies are done. We also have many other pathogens - treating any of those will reduce symptoms, as will treating any other problems. Treating ME/CFS today is often more like trying to treat a brain tumour with an aspirin - it reduces the pain and inflammation, but it is not a cure. When we understand more, and clinical trials on antiretroviral drugs commence and finish, we will know lot more.

Bye,
Alex
 

Sherby

Sherby
Messages
91
Location
London UK
I believe that the WPI are on the right track. What convinces me is the way governmental departments seem to put pressure on any XMRV research not Just the UK or US or other country's.

I have followed this subject of disinformation in the UK 20 years .
Barriers are being put in place instead of true research.
I know that the UK media outlets are only reporting a one sided story.
And that goes for Parliament. Lies Lies Lies
 

SaveMe

Senior Member
Messages
421
Location
the city
I believe that the WPI are on the right track. What convinces me is the way governmental departments seem to put pressure on any XMRV research not Just the UK or US or other country's.

I have followed this subject of disinformation in the UK 20 years .
Barriers are being put in place instead of true research.
I know that the UK media outlets are only reporting a one sided story.
And that goes for Parliament. Lies Lies Lies

i agree shelby its a shame
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Moderator: Removed name that could be someone's real name, as opposed to membername. is a nick of someone who asked all the same questions in chat, not a real name. The questions you ask are all amply dealt with in the forums, the posts do not advance the debate, and one of your threads made absolutely no sense. You would be better served by using the search function and asking questions on the already existing threads on these topics. Bye, Alex
 

SOC

Senior Member
Messages
7,849
The questions you ask are all amply dealt with in the forums, the posts do not advance the debate, and one of your threads made absolutely no sense. You would be better served by using the search function and asking questions on the already existing threads on these topics. Bye, Alex

Alex gives wise advice here.