XMRV positive vindication!

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Hello everyone,
I unfortunately have been visiting this site every day for the past 2 1/2 years. This is my very first post. Finally, after a long wait for my XMRV test results, I now know that I am XMRV positive. Wow, what a mixed bag of emotions that has placed upon me. One emotion that I'm so obsessed with right now is the need to track down every doctor I've visited the past 2 1/2 years (probably 15 of them, not including the ER Doctors) and say "Ha! See this! You SOB! Do you believe me now?" I have written a few letters already:) Problem is, the one I really want to write to is no longer practicing medicine:-(. Has anyone else gone to this extreme to find some vindication for the absolute hell this illness puts us through?
 

jeffrez

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It's really just a waste of time and energy. They'll just say it doesn't mean anything and will probably think you're psycho.
 

Francelle

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Hello Jeff,

I have my list ready for the day when and if I get a confirmatory XMRV + or any other confirmed diagnosis. I don't only have my list ready, I have a few well written but pertinent draft letters ready too - lol!!

Anyway it must be a surreal feeling for you having that result. Where did you get the testing done?

You have been incredibly restrained waiting so long to post your first message! 2 1/2 years -sheesh! Don't make it so long next time!
 

Navid

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rude unnecessary comment

It's really just a waste of time and energy. They'll just say it doesn't mean anything and will probably think you're psycho.
your opinion, which you of course are entitled to....but what is the point of shi__ing and Pi__ing all over Jeff's parade:confused::confused::eek::eek::headache::headache:...he feels vindicated, let him have a moment of happiness.:D

Jeff ignore people who have nothing better in life but to take the time to bring you down:victory::thumbsup:


Yay Jeff, congratulations....maybe your letters will actually educate some ignorant drs.:D
 

ballard

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Go Jeff!!!

Anyone who can get a doctor's attention and tries to educate him/her is doing a service for us all.

Doctors may still be dismissive until the damage caused by XMRV is fully known, but I think they will be more alert to emerging information when they know that they have a patient (or ex patient) who is XMRV positive. :thumbsup:
 

Cort

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Hello everyone,
I unfortunately have been visiting this site every day for the past 2 1/2 years. This is my very first post. Finally, after a long wait for my XMRV test results, I now know that I am XMRV positive. Wow, what a mixed bag of emotions that has placed upon me. One emotion that I'm so obsessed with right now is the need to track down every doctor I've visited the past 2 1/2 years (probably 15 of them, not including the ER Doctors) and say "Ha! See this! You SOB! Do you believe me now?" I have written a few letters already:) Problem is, the one I really want to write to is no longer practicing medicine:-(. Has anyone else gone to this extreme to find some vindication for the absolute hell this illness puts us through?
I imagine most of have had a couple of them. I remember two in particular; the first guy I saw and a guy in college....they do kind of linger in the mind :)........Hopefully some day people won't have to go through that.
 

Daffodil

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jeff...congratulations!

i kind of agree with kite. the docs will just see all the negative studies and think you are unstable. best to wait until its proven in my opinion.

after 18 1/2 years of this, i can totally relate to you. i also fantasize about really giving it to those azzholes.
 

Jemal

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Unfortunately I have to agree with Mr. Kite and Daffodil. XMRV is very controversial and most doctors haven't even heard of it. Flinging this into their faces, might not be the best of plans. Hopefully our time will come, though...
 

taniaaust1

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I too agree with Kite and daffodil, till this virus is accepted and vertified to the point where the medical community is believing the tests, that doctor wont feel sorry and think you are just been conned and that you are jumping at straws.

If it was me, I'd wait a little bit longer so you can really hit hard with it and lay a good guilt trip onto that deserving of it doctor.

Nice to see you post on the board :) .. congrats on your first post.
 

Esther12

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I've got to add to the chorus of caution. What a positive XMRV result really means is still pretty ambiguous. I'd try to wait for more info to come out before storming into any doctor's surgeries. (Welcome to the forum though!)
 

JPV

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Even Dan Peterson has acknowledged that XMRV may indeed be just a "passenger" taking advantage of an already depressed immune system...

Exceprt from: http://merutt.wordpress.com/2010/05...og-dr-petersons-xmrv-foredrag-i-madrid-26-05/

When we asked about the fact that HIV patients that are XMRV positive and have CFS, are not reacting to their current antiretroviral treatment, and that could lead to the possibility that XMRV is just a passenger virus in a depressed immune system, his answer was that actually that would be one possibility, and the other one is that they are taking the wrong drug, because XMRV is a different retrovirus, and they are being treated for HIV.
I think it would be foolhardy to put to much stock in the current findings as they are very preliminary.

I am constantly subjected to skepticism in regards to my condition, and frankly, I could give a shit what other people think. I tend to subscribe to the theories that Rich van Konynenburg and Amy Yasko have been proposing and have put much effort into employing their strategies for getting this condition under control. I'd rather spend what little energy I have in working towards getting myself better instead of wasting precious time seeking "vindication" by going after those that have ridiculed me in the past.
 
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I have also been dreaming of vindication and have made a list of doctors to write to! So I understand your need to share the news! Though I'm not sure what I would do if I found out tomorrow that I'm XMRV positive . As it has been pointed out, the docs in question would be informed that there's a new retrovirus out there. On the other hand, since the association of xmrv with CFS has not been proven yet, some doctors might be dismissive. But in the end, no matter how it is received, expressing yourself can be liberating.
 

Nielk

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Hello everyone,
I unfortunately have been visiting this site every day for the past 2 1/2 years. This is my very first post. Finally, after a long wait for my XMRV test results, I now know that I am XMRV positive. Wow, what a mixed bag of emotions that has placed upon me. One emotion that I'm so obsessed with right now is the need to track down every doctor I've visited the past 2 1/2 years (probably 15 of them, not including the ER Doctors) and say "Ha! See this! You SOB! Do you believe me now?" I have written a few letters already:) Problem is, the one I really want to write to is no longer practicing medicine:-(. Has anyone else gone to this extreme to find some vindication for the absolute hell this illness puts us through?
Welcome Jeff to the forum!
Now, you got a taste of all the different point of views on this site.
In a way, it's pathetic that we have to wave an XMRV flag in front of others to be understood.
I can understand though how you feel.
Some say vindication is a waste of time but, if it makes you feel better - go for it!! You deserve it.

Hopefully, they will find soon a definitive protocol to help people with XMRV and I wish you a quick recovery.
 

JPV

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JPV- I agree. But i will definitely be visiting some assholes for an 'i told you so' when we get more info.
I understand the sentiment, but I guess as I find myself getting older I see how directing negative energey at others does very little good and generally cause more harm to the sender than the recipient.
 

ukxmrv

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Welcome Jeff - and enjoy the euphoria of the moment.

We don't get many good times in this disease so enjoy the ones that could be a real step forward.

I'm about a year ahead of you in having my own positive result. The reality of the lack of treatment is there. The reality of the lack of a proper replication and all the negatives.

However, I am far more optimistic than before. Far more confident of finding a treatment and a cure. This is precious, to be appreciated and savoured.

If it makes you feel better confronting doctors or just fantasising about all the doctors who have p****d on you on the past go right ahead. They may not accept it in real life. They may all be dead or retired by the time XMRV is proved beyond medical doubt to be a cause. It may be jumping on some graves in the end (if you still feel strongly about it).

However, this is your moment. Don't let anyone rain on your parade!

XMRV+
 

IntuneJune

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Do we say welcome since you have been here 2 1/2 years? Glad you posted!!

I admire folks who can forgive others... for the most serious infractions. When I was younger, I did not understand the statement "To forgive is a gift to yourself." Now that I am MUCH older, and maybe a tiny bit wiser, I understand that statement.

In the past, I held ligitimized grudges which were thoroughly justified, but I never realized what a burdeon these grudges were for me. Now later in life, I choose not to carry that heavy baggage any more.

In our CSF/ME world, that is hard to do because the same insult, assault keeps occuring over and over, year after year. (Sigh).

I also have heard it is very cathartic to write letters to an invidual who has caused this pain even if you do not send the letter.

We all need to find our way of coping.. whatever helps..... June
 

Rrrr

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welcome to the forum!!!!!!!!! how did you go 2.5 yrs without posting?? you must meditate or something. :)
 

dannybex

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I understand the sentiment, but I guess as I find myself getting older I see how directing negative energey at others does very little good and generally cause more harm to the sender than the recipient.
PRECISELY.

p.s. Have these forums been around for 2 1/2 years already?!!! :)