Welcome wideawake - one of the UK 14 (XRMV+)

[wideawake]

[I moved wideawake's posts to their own thread. Please join me in welcoming her to the forums. Kim]

With all these marriage proposals flying around, I have decided to come out of hiding! You never know...
Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter negative which makes this roller coaster worse to bear. I am not as ill as my daughter, but I can't believe that it is not the same illness, so I am totally confused by everything.

 

[Lily]

With all these marriage proposals flying around, I have decided to come out of hiding! You never know...
Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter negative which makes this roller coaster worse to bear. I am not as ill as my daughter, but I can't believe that it is not the same illness, so I am totally confused by everything.

I'm so glad you decided to come OUT, wideawake! Welcome! We will support you and your daughter in every way we can if you give us a chance!!

 

[_Kim_]

With all these marriage proposals flying around, I have decided to come out of hiding! You never know...
Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter negative which makes this roller coaster worse to bear. I am not as ill as my daughter, but I can't believe that it is not the same illness, so I am totally confused by everything.

wideawake...thank you thank you thank you for posting this today.

As I'm sure there will be a flurry of questions and comments that will take us in another direction, would you be willing to let me start a new thread - or move your post to one of the UK XMRV+ threads that already exist?

 

[Katie]

With all these marriage proposals flying around, I have decided to come out of hiding! You never know...
Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter negative which makes this roller coaster worse to bear. I am not as ill as my daughter, but I can't believe that it is not the same illness, so I am totally confused by everything.

Welcome to Phoenix! Your daughter may well test positive through the antibody test and all aspect of the test need to be refined so you and your daughter's XMRV story is not over yet, you may find Dr Kerr's work about gene expression, you could well have the same type of disease but different subsets. I'm waiting for results currently and I'm British too. Welcome again and I look forward to reading your posts, Katie

 

[Countrygirl]

=wideawake;47384]With all these marriage proposals flying around, I have decided to come out of hiding! You never know...
Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter negative which makes this roller coaster worse to bear. I am not as ill as my daughter, but I can't believe that it is not the same illness, so I am totally confused by everything.

Wideawake......and a special welcome from the S.W. of the U.K. This is a wonderful forum for information and support and I'm sure that you will very much enjoy being part of this community. I hope you won't mind, but we will have many questions to ask you, so maybe you will need a thread of your own. You are, after all, something of a national treasure at this point - a UK XMRV+.

Welcome aboard. :Retro smile:

 

[wideawake]

Thanks Kim

wideawake...thank you thank you thank you for posting this today.

As I'm sure there will be a flurry of questions and comments that will take us in another direction, would you be willing to let me start a new thread - or move your post to one of the UK XMRV+ threads that already exist?

Yes Kim, please move this to another thread. I can't promise I will post very often though, but I will try my best Thanks

 

[Advocate]

You are, after all, something of a national treasure at this point - a UK XMRV+.

Make that international treasure. And yes, we're really happy to have you here. So sorry about your daughter.

 

[Sunday]

Hello Wideawake, thanks for coming onto the forum. We all know what it's like not to be able to post all the time...

One possibility did occur to me about your positive and your daughter's negative XMRV tests. I agree that problems with the test may be it, but there's another possibility- which may make me unpopular here: maybe XMRV isn't the CAUSE of CFS/ME. Maybe it's a TRIGGER as so many other viruses seem to be (I've done a fair amount of reading on this forum, and viral infections do seem to have a prominent part in creating the optimum terrain for CFS/ME to erupt.

 

[omerbasket]

I don't know, Sunday. In the US study 98% of the ME/CFS patients had evidence for XMRV infection. they came from many places, including some from UK, Australia and more. Is it just a coincidence that som much of these pateints were XMRV positive?

wideawake, as had been said here, the tests are not yet validated and there might be people who tested negative and still be positive for XMRV. Whats even more interesting is that your daughter is sicker than you yet she wasn't found positive and you were. You say you think you both have the same disease. It's even more reasonable when thinking about the fact that you're XMRV positive. Therefore, it might be a clue that even in those who were negative on the VIPdx tests (and maybe even on the WPI study) might actually be positive (again: a familly in which the father and the daughter seems to have the same illness. XMRV is contagous. the daughter is sicker yet she wasn't found XMRV positive while the father was. So, perhaps, the test does not found XMRV in all of the people that are infected with it?).

 

[sleepwalking]

[I moved wideawake's posts to their own thread. Please join me in welcoming her to the forums. Kim]

Sorry, where?

 

[_Kim_]

[I moved wideawake's posts to their own thread. Please join me in welcoming her to the forums. Kim]

Sorry, where?

Right here. The first bunch of posts on this thread were made on the UK XMRV study #2 thread. I pulled them off and started this one to welcome wideawake.

 

[Stuart]

Welcome!

Wait, what marriage proposals?!? What have I missed? :Retro wink:

Regarding XMRV, it has an association that is being investigated, interesting news from the CROI 2010, 17th Annual Conference on Retroviruses and Opportunistic Infections. XMRV may not be found in the blood, while it is found in the lymphoid organs and tissues. The state of the infection appears to one of the determining factors. (I see some needle biopsies in our future ).

Then there are those healthy controls who tested positive, another sign that a genomic or epigenomic factor may be in play.

UK 14, is that like the Chicago 7? The radical Brits!

 

[JAS]

I am joining Wideawake in 'coming out'! I have tested positive too. Haven't a clue what number I am! How do I feel? I didn't know whether to scream or shout or laugh or cry...but it has given me the validation to do something about this. Currently crashing but only to be expected....I just always seem to manage to forget how awful it is!

 

[Advocate]

I am joining Wideawake in 'coming out'! I have tested positive too. Haven't a clue what number I am! How do I feel? I didn't know whether to scream or shout or laugh or cry...but it has given me the validation to do something about this. Currently crashing but only to be expected....I just always seem to manage to forget how awful it is!

You don't know whether to scream or shout or laugh or cry and I don't know whether to offer congratulations or condolences. I do wish you a good outcome, whatever lies ahead. Thank you for letting us know.

 

[JAS]

You don't know whether to scream or shout or laugh or cry and I don't know whether to offer congratulations or condolences. I do wish you a good outcome, whatever lies ahead. Thank you for letting us know.

You are welcome, my family and core friends didn't have a clue what to say either! I did however tell my children that I am no sicker than I was last week, it just has a new name now.

 

[wideawake]

Welcome!

Wait, what marriage proposals?!? What have I missed? :Retro wink:

Regarding XMRV, it has an association that is being investigated, interesting news from the CROI 2010, 17th Annual Conference on Retroviruses and Opportunistic Infections. XMRV may not be found in the blood, while it is found in the lymphoid organs and tissues. The state of the infection appears to one of the determining factors. (I see some needle biopsies in our future ).

Then there are those healthy controls who tested positive, another sign that a genomic or epigenomic factor may be in play.

UK 14, is that like the Chicago 7? The radical Brits!

It was getting so exciting on a different thread (XMRV2)- with people saying that they loved some of the threads so much that they would marry the people posting, that I couldn't resist the temptation to join in! Now that my post has been moved to its own thread, it sounds like I wanted to set up a dating agency!!
The UK14 = the group of 14 people who were in the first round of private UKtesting in December, but yeah, it would be great if we could down in history as being the catalysts for change!

 

[wideawake]

welcome, wideawake. i would say that your daughter will for sure test positive to XMRV antibodies since she is sick, very likely shares the exact same illness as you, and you are positive.

i wonder if you have found a doctor willing to treat XMRV there. the HIV / infectious disease docs seem to be more sympathetic to our plight, from my experience.

love
sue

At the moment, my current private ME doctor is putting me on Equilibrant and LDN. I have challenged my Primary Care Trust to do something with me, but so far all they have done is get me referred to Liverpool ME clinic who say there is a 4 month waiting list at least, which is a pain, cos I want to go there and then make a big fuss about whatever rubbish they throw at me (unless, actually, they come up with something other than their usual CBT/GET etc)

 

[V99]

Wideawake, hopefully in 4 months time you will have more ammunition for those useless clinics. I wonder how they feel about magical medicine, and being lied to, just like the patients.

 

[Abraxas]

I am joining Wideawake in 'coming out'! I have tested positive too. Haven't a clue what number I am! How do I feel? I didn't know whether to scream or shout or laugh or cry...but it has given me the validation to do something about this. Currently crashing but only to be expected....I just always seem to manage to forget how awful it is!

Thanks for sharing JAS - good luck with everything.

 

[maryb]

JAS - thank you for sharing your news and hope your crash doesn't last too long, its a difficult time for you.