Testing positive for XMRV: A personal survival guide needed

[gracenote]

I have free-floating anxiety about waiting for my test results to come back I actually have two tests out there. It's just starting to dawn on me that this is for real, and I'm no longer feeling the detached, more academic interest that I was initially. It's all been so very fascinating. And exciting. And there's been so much information to follow on this forum alone. But now I'm having my "Oh shit" moment.

If a test comes back positive, it's really rotten to have a retrovirus that will never go away and that I may have passed on to my children. If they both come back negative, it's really rotten that they don't have a good enough test yet so I won't really know if I do or don't have a retrovirus that will never go away.

If I hadn't been asked to come in for these two studies, I would have waited to be tested. I find I've been included into this early uncertain stage of this new discovery and I don't feel ready for it. (I'm not complaining, by the way. I know some of you would desperately like to be in this situation.)

What if the test comes back positive? What then? I don't mean with treatment that will take time to sort out and I expect that. But what do I do about telling people my children, my family, various healthcare professionals, other interested parties (or parties that should be interested)? I know some of you are already dealing with this and it must feel very odd to be among the few in the world to know you have XMRV, especially since no one really knows what it all means yet. How are you coping? What is helping you?

I'm wanting some help in coming up with a strategy for myself if/when my test comes back positive. And if I turn out not to need this information myself, hopefully some of you might feel better prepared when you are told you have XMRV.

To begin with, I'm hoping to develop a short, simple and clear explanation about XMRV that includes a few references and that can be personalized by me (and anyone else who would like to use it). I would like this to fit on one page with lots of white space left. What I don't want is to refer people initially to a site like this because it's too much to begin with (although excellent for anyone who's interested in digging deeper). Then maybe attach one article perhaps The New York Times first article?

I find short, simple and clear explanations are the hardest kind of writing to do.

Any thoughts? Anyone want to help with this?

 

[SickOfSickness]

You have some great thoughts on this. My brain is foggy but I wanted to reply anyway.

I feel similarly about it already (even though I am going to wait for a kit for a while), I mean, I agree with what you said. It would be natural for us to worry about all sorts of things, even some of them that are extreme or unusual. I was already wondering if it means I can not have sexual activity anymore, geez! Worried that people will be more scared off than if they just heard "chronic fatigue"? Yes, I've wanted people to take it more seriously for years, but this seriously!?

I would not feel like you have to tell everyone right away either. I think it's better to tell in 3-4 stages where first you tell only the ones closest. Then you tell other people who have been around a lot or around for a while. Then later, people who aren't already caring for you. Less stress of answering so many questions.

I believe there are some threads on this topic but this is a great thing for some of us to discuss. Some books on dealing with a new cancer diagnosis might be helpful, don't you think? I think there could be enough similarities especially if we are starting meds with a lot of side effects. I am hopeful because I read there was one they're working on for XMRV that should not have a lot of side effects.

 

[Alice Band]

Gracenote,

You have brought up a very good topic. I'm also awaiting my results.

The sheet that you mentioned would be very useful when attending medical appointments to see professionals who have no ME knowledge and no retro-viral knowledge (let alone XMRV). For examples I had a lump removed last year and something like this would be great to send them before the operation. Also to a new dentist.

Physically I cannot explain it all on the telephone or take up what would be a substantial amount of time explaining at any appointment. As I am largely housebound (with limited strength for forays into the the real world) I cannot allocate the strength to have to educate professionals that I do go and see.

I've also got a wide circle of friends from before I was hit by this disease and some new friends from after. It would be nice to send them something that would explain but not scare the wits from them. I can't write individual emails and letters and certainly not telephone them to explain.

In the UK we have a problem with massive anti-ME propaganda in the media. XMRV is largely being ignored here (apart from the odd newspaper article such as the front page of the Independent) and it isn't possible to guess what the psychiatric lobby has up it's sleeve to counter XMRV publicity.

On one happy note I did manage to talk to my mother on the telephone and she was very understanding and astute about the possibilities around the virus. She's an ex-medical professional so has a good grasp of matters - although this field has only developed since she left. I sent emails to my sister with links to the UK Independent newspaper article and she was very good. Both of them said that they would explain the possible implications to the rest of the family - we have several conditions that could possibly be explained by this.

I'm really lucky that my husband is supportive and reacting in his normal calm manner (as he has reacted to earlier viral tests). No children involved.

For the past months and especially the past weeks it been an emotional roller coaster for me and that's been hard on people around me. The emotionally roller coaster will continue regardless of the result - we need to continue with the testing options and follow the progress.

We can't put the genie back in the bottle now. If it is not this retro-viral discovery it will be another one (or something similar). I lived through the earlier ones (Defreitas and Homles) and I've been talking to family, friends and lovers for decades now about this.

 

[gracenote]

I want to because . . .

Thanks for your responses SickOfSickness and Alice Band. (And Levi, I saw your response before you removed it!) I also received a private PM in support of this idea.

To begin with, I'm hoping to develop a short, simple and clear explanation about XMRV that includes a few references and that can be personalized by me (and anyone else who would like to use it). I would like this to fit on one page with lots of white space left. What I don't want is to refer people initially to a site like this because it's too much to begin with (although excellent for anyone who's interested in digging deeper). Then maybe attach one article perhaps The New York Times first article?

I find short, simple and clear explanations are the hardest kind of writing to do.

Any thoughts? Anyone want to help with this?

I am very inarticulate in face to face conversations. I can't imagine bringing up XMRV in real-time dialogs as I struggle to find words and language and enough energy to engage around this complex topic (or any topic for that matter). And I need something to help me. That's why I would like to start with a simple one page description. I don't know how to engage around this topic but I want to.

I want to because it can be used as an educational opportunity for those who have many misperceptions about CFS.

I want to because it gives me something to talk about besides my own symptoms and the four walls I live within. This is exciting news. I am a part of TWO studies. This is an important part of my life regardless of what happens next.

I want to because I have young adult children who still think they're pretty invincible, and three young grandsons facing vaccinations. This conversation needs to happen so we can all make educated decisions as need be.

I want to because I am part of a community of somatic practitioners who often view CFS as a non-organic process rather than a disease.

I want to as I am still attempting to complete my MA studies and will probably be applying once again for a medical leave of adsence. This information in no way validates my chronic illness, but it will provide one more support for the seriousness of my condition.

And finally, I want to because it will help me in my own head to know what I know.​

So thanks for responding. Maybe soon the beginnings of this one page will come to me and I will post my work in progress.

 

[MEKoan]

I am very inarticulate in face to face conversations. I can't imagine bringing up XMRV in real-time dialogs as I struggle to find words and language and enough energy to engage around this complex topic (or any topic for that matter). And I need something to help me. That's why I would like to start with a simple one page description.

I think this is an excellent idea. While I am very comfortable talking about most things with most people, I find it almost impossible to bring myself to speak about ME/CFS with anyone, ever. In fact, I have not seen my doctor in years, in large part because it would necessitate talking about this, which could have negative consequences for me regarding my disability. But, I would rather talk about pretty much anything but this.

It is such an issue for me that I have been unable to respond to this thread because I get to this point and my mind goes blank.

...

...

(I really need an emoti!)

I want to say that I would be happy to help you write something but some kind of strange defense mechanism kicks in and I suddenly get confused: write something? What does that mean? The words are familiar... but... ?

So, yes, even though I am not getting tested, the time to begin a dialogue about this illness seems to be upon us, finally, and I really want to help you figure out...

...

I'm not trying to be a smart donkey, my mind really goes blank.

...

so sorry!

 

[Kati]

n fact, I have not seen my doctor in years, in large part because it would necessitate talking about this, which could have negative consequences for me regarding my disability.


so sorry!

Koan, could you please tell me in which way it could negatively affect your disability?
you can pm me in that regard if you like. Thanks

 

[leelaplay]

a start?

gracenote, its hard for me to imagine you being inarticulate in speech as you are so elegantly articulate in writing.

I think for many of us, our reaction to your post was similar to Koans and thats why the responses have been slow and few. Ive started to reply a number of times, but

It is such an issue for me that I have been unable to respond to this thread because I get to this point and my mind goes blank.

...

...

I know whenever I have tried to imagine what it would be like to be waiting for my results, moving this from the abstract impersonal academic to the personal, Ive started to undergo a profound shift as my reactions moved from my frontal lobe into my limbic, or I prefer reptilian, brain. Excitement, fear, confusion, visceral reactions.chaotically emerging. Then stop blank

I have no idea what to say, but Ill start brainstorming, expecting everything to disappear as this develops:

Goal: to prep a one sheet page about xmrv that can be easily tailored to fit explaining it to different people and/or for different situations, including:

a) a short clear definition of xmrv (could differ according to audience)

b)Test: type of test, lab, date, any caveats regarding test + links to data to support caveats

c) maybe separate short sections for implications for:
i) significant other
ii) children
iii) other family
iv) friends
v) acquaintances, strangers
vi) gp
vii) hospitals, paramedics
viii) dentist
ix) work
x) disability

Here are a couple sources to peruse that might help clobber together a nice clear explanation of xmrv (or a few different ones for different audiences). I didnt include anything from wikipedia as they have been less than stellar in publishing an accurate definition.

XMRV is a human retrovirus and is similar to HIV and HTLV-1. It was first identified by Dr. Robert Silverman, in prostate cancer tissue of men with a specific genetic defect in their antiviral defense pathway. Prior to the Whittemore Peterson Institute study, XMRV had not been isolated from a human diseased population or been shown to be infectious and transmissible.

(from WPI http://www.wpinstitute.org/xmrv/xmrv_qa.html)
-------------------------

a human gammaretrovirus, xenotropic murine leukemia virusrelated virus (XMRV)

(from Science, the original article http://www.sciencemag.org/cgi/content/abstract/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci )
---------------------------

So what is this virus X-M-R-V? Well, the RV means retrovirus. So that puts it in a family of viruses, retroviruses, that we actually know quite a bit about. And the X is xenotropic. M was mouse. This virus started in a mouse. Now theresya know viruses start somewhere. Theyve got to start somewhere. Like the HIV virus started in a monkey. Its a monkey virus that eventually evolved several hundred years ago into a virus that could infect humans. So we got this lousy virus, HIV.
XMRV is in its own evolution. And it jumped from mouse to human at some point. We dont know when, but probably not in the too terribly distant past. Well, that doesnt mean a lot, because in Darwin terms, distant past could be 100 million years, but these guys think like that, the evolutionary biologists. That wasnt long ago, a thousand years ago or so. But in this mouse virus, it could have been in the last century. Thats the sense of it.

About 3-4% of people have this virus and theyre not sick. And thats another part of this. So theres this background population. Now, Im just saying that flat out, but you know I gotta tell you that the research on this virus is only 2 years old. And so, we dont know very much about it. And theres probably regional differences. There might even be continental differences. We dont know.
.
And for those of you who arent in the land of science, Science is like the Mecca of publication. If you get your stuff in Science, thats the best place you could possibly put them. And they dont take just anything and they sure, sure, sure dont take something unless its extremely well done, validated and tested out. So they took this paper. And if you read this paper, they not only took it, they put it in Science Express. They thought it was so important, they published it on a very fast track. And so, that was important.

(from Dr Klimas lecture on XMRV presented by PANDORA and ME/CFSCommunity (Nov 2009)
as transcribed on Phoenix Rising http://aboutmecfs.org/Rsrch/XMRVKlimas.aspx )
--------------------------

The new suspect is a xenotropic murine leukemia virus-related virus, or XMRV, which probably descended from a group of viruses that cause cancer in mice. How or when XMRV found its way into humans is unknown. But it has also been linked to cancer in people: it was first identified three years ago, in prostate cancer, and later detected in about one-quarter of biopsies from men with that disease (and in only 6 percent of benign biopsies). It is a retrovirus, from the same notorious family that causes AIDS and leukemia in people.

The original nytimes article, Is a Virus the Cause of Fatigue Syndrome?, may be one of the easier explanations of xmrv:
http://www.nytimes.com/2009/10/13/health/13fatigue.html?_r=1&ref=health
------------------------

Dr Klimas on the nytimes blogs
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
--------------------------

A New Virus for Old Diseases? John M. Coffin1 and Jonathan P. Stoye2 http://www.sciencemag.org/cgi/content/summary/sci;326/5952/530
-----------------------------

 

[MEKoan]

Koan, could you please tell me in which way it could negatively affect your disability?
you can pm me in that regard if you like. Thanks

Hi Kati,

I am on ODSP and I wonder if they do a review of my case if being someone with a chronic illness who never sees her doctor might weigh against me. It's scary to be as close to the street as I am. I am completely dependent on the good will of ODSP.

 

[gracenote]

brain freeze

From Koan: It is such an issue for me that I have been unable to respond to this thread because I get to this point and my mind goes blank. ... ... (I really need an emoti!)

I want to say that I would be happy to help you write something but some kind of strange defense mechanism kicks in and I suddenly get confused: write something? What does that mean? The words are familiar... but... ?

So, yes, even though I am not getting tested, the time to begin a dialogue about this illness seems to be upon us, finally, and I really want to help you figure out... ... I'm not trying to be a smart donkey, my mind really goes blank. ... so sorry!

From islandfinn: I think for many of us, our reaction to your post was similar to Koans and thats why the responses have been slow and few. Ive started to reply a number of times, but

I know whenever I have tried to imagine what it would be like to be waiting for my results, moving this from the abstract impersonal academic to the personal, Ive started to undergo a profound shift as my reactions moved from my frontal lobe into my limbic, or I prefer reptilian, brain. Excitement, fear, confusion, visceral reactions.chaotically emerging. Then stop blank

I have no idea what to say, but Ill start brainstorming, expecting everything to disappear as this develops:

Yeah, isn't that the darndest thing? No apologies needed. That's what happens to me. That blankness. That's why I asked for help. I go blank . . . Get all tangled up . . . Short out . . . Get an "error" message . . . Have my whole system go into freeze and have to "Force Quit."

Thanks for articulating this.

And thanks islandfinn for starting your brainstorming for me. This helps a lot. I will print your thoughts out and stare at the paper for awhile. And then I think I will open a blank document and create a title and save it. And then . . . stay tuned.

 

[MEKoan]

Get an "error" message . . . Have my whole system go into freeze and have to "Force Quit."[/COLOR]

yes, just like that!

 

[SickOfSickness]

I'm in the same boat, most of the time I can't verbally explain things.

I feel there should be different versions for a) medical professionals b) younger people or people who would prefer to have the simplest shortest explanation only c) the rest... maybe others.

Since I have the brain fog, I know that if a friend wanted me to read their single page letter, it could be difficult unless I was given version B. It's not only ill people, but some people have problems with reading text and concentrating, especially if they see ANY big words.

On the other hand, certain people I know would be slightly offended if I sent them a letter like B, that was TOO "dumbed down".

However I think it can be all on one sheet IF the simplest statements are used as bolded headings, and the medical technical stuff is like footnotes, on the back, or at the bottom.

 

[Dreambirdie]

Hmmmm, I'm thinking there is something about the "receivers" of the news, that influences how I feel, and how I articulate myself in a given circumstance.

When I tell my close friends something about my health, I am MUCH MORE lucid and clear and articulate, than when I have to explain the whole mess of CFS/XMRV to an uninformed person, or worst of all to a skeptical "non-believer." Those are the conversations that I DREAD. They leave me tongue tied and dazed and full of SELF-doubt, because REALLY no matter WHAT I say... it will never make sense or get through those big skeptical walls of resistance. I could just as soon tell them that aliens have implanted my brain with otherwordly pathogens.

When I have to "inform" someone in the skeptic camp about ANYTHING regarding my health, I keep my sentences brief and loaded up with evidence. AS IN: "I finally know what's wrong with me! I have the test results and here's a copy. If you want, I can email you a bunch of links to some great articles, so you can read all about it. If you have any questions, we can talk after you've read through the material. Gotta go now. Thanks for listening."

Just my 2 cents. Since I haven't been tested yet, I don't have to deal with this yet. But if I did have to talk to someone, that would be my m.o.

 

[Dreambirdie]

WOW, I just saw IF's GREAT ideas and recommendations. So my other thought now is let's have IF write our letters for us!

 

[gracenote]

I have news.

Finally, five months after my blood draw in September, I have gotten my XMRV test results back from WPI. I have tested positive by serology. I don't know if I have an active infection yet the other tests are still pending.

How do I feel about this? After the initial shock of getting any results at all (5 months is a LONG time), and then seeing that I am positive, and after sending a couple of PMs and getting very heartfelt responses, I feel fine.

I am actually happy for me this may finally give me some answers. I am less happy that this presents an unknown for my children and grandchildren (I just found out a new grandchild is on the way). Thankfully, they are all healthy, but I can't help wondering if they are infected and that a trigger is waiting around the corner. I'm also hopeful. Anyone who gets this dreaded disease now will be in much better shape than I was back in the early 80s before we even had that ridiculous name foisted on us.

I also feel like I neglected to do my homework I'm still not sure what to tell people, although I am better informed now.

Islandfinn, you gave me some great ideas. I will reread this thread and go from there.

Thank you all for being here for me. I cannot imagine going through this without this wonderful forum.

I have an appointment I need to go to, so I will be offline for awhile. I'll check in later.

All shall be well . . .

gracenote

 

[Hysterical Woman]

Oh My, Grace!

Oh my, Grace,

We all wish the best for you. It is so difficult first not knowing for so long, then in knowing. Please keep us updated on how you are doing, and please take care of yourself.

HW

 

[George]

Thank You

Grace
The waiting for you is over! You have gone and done what so many of us have yet to do. You have faced what the rest of us will have to face. Most of all you have done both with grace. Thanks for being one of the pioneers, your willingness to volunteer helps all of us in the future.

And I'm so glad you know because it will help you to tailor what you will say to your family. So many questions that they may ask will be met with 'I don't know' because you will be learning right along with research community. There are still so many 'don't know's' that will take time to fill in.

Big Hugs, for all you contribute to the forum and to the future of CFS.

 

[SunnyGal]

I think a one page info sheet on XMRV to show/give people is a fantastic idea. I kind of freeze up in talking/thinking about it, too, but would be happy to help if I can.

I have been very open and straight forward with all my friends and family during all of my illness (and mine started out with a lot of reproductive problems so it was kind of delicate stuff to be talking about but I had no problem sharing with people... probably more than most of them wanted to know!). And before I got my XMRV results I was fine talking to anyone and everyone about XMRV as well. But, once I got my XMRV results, things changed for me, and I'm still trying to figure out why exactly and what I do with it. I've not told anyone about me testing positive for XMRV except a few family members and a few CFS friends online. I've really started pulling in on everything related to my illness actually. I used to post updates on my treatment to all my Facebook friends but now I limit it to only a handful of people. This is a very different way of being for me and I'm not quite sure what caused this change...

One thing is I do think the whole idea of people being freaked out about XMRV being contagious, and not wanting to be ostracized for that, is part of why I'm holding back from telling people about it. Does anyone else worry about that? It also feels like such a stigma, having a retrovirus that you will never get rid of. I always thought I'd completely get rid of this illness but now I know I can't really.

Sorry for the downer post, everyone. I guess I've just been struggling with what my XMRV diagnosis means (which is hard since they know so little at this point).

I do love the idea of a one page info sheet on XMRV to share with family and friends. Please let me know if I can help. I can review or even help come up with a summary? Just let me know!

Sunny :Retro smile:

 

[gracenote]

I do love the idea of a one page info sheet on XMRV to share with family and friends. Please let me know if I can help. I can review or even help come up with a summary? Just let me know!

Sunny :Retro smile:

Sunny,

I don't think I'm struggling about XMRV being contagious in the present time. I'm more concerned if I passed it on to my children and grandchildren. I breast-fed my kids because I thought that was the very best for them. I have no regrets, but it makes me wonder. I also wonder how / when I was infected. It will all remain a mystery for a long time.

Thanks for your offer of help. I will be thinking about this over the next couple of days. I have been fairly quiet about my illness all these years I'm now wanting to announce it to the world. Our different responses to our positive status are interesting.

 

[SunnyGal]

Sunny,

I don't think I'm struggling about XMRV being contagious in the present time. I'm more concerned if I passed it on to my children and grandchildren. I breast-fed my kids because I thought that was the very best for them. I have no regrets, but it makes me wonder. I also wonder how / when I was infected. It will all remain a mystery for a long time.

Thanks for your offer of help. I will be thinking about this over the next couple of days. I have been fairly quiet about my illness all these years I'm now wanting to announce it to the world. Our different responses to our positive status are interesting.

Hi Gracenote,

I wasn't concerned about being contagious either until, when I told a few people about my + test result, they immediately responded by asking if it was contagious with a kind of freaked out tone in their voice. Maybe something for you to think about beforehand. Hopefully you won't have any responses like I've had. Initially I also wanted to tell everyone of my test result but after a few such negative responses I have been more quiet about it, and about my illness in general.

I am also very concerned if I've passed it to my kids. I also breast-fed because I thought it was best. My oldest until he was 3 years. Interestingly my youngest weaned himself at 16 months just when I started getting very sick. I have wondered if infections in my milk started increasing and he instinctively knew he didn't want it. Luckily neither of them are symptomatic at this time. Hopefully they will come up with good treatments in case they ever do get sick.

Congrats, by the way, on your test result. It's not an easy thing to receive, I know, but good to have the info and know what you need to look into and deal with.

Best wishes, Sunny

 

[gracenote]

I emailed a friend earlier today to tell her of my results. I had previously sent her a couple of the New York Times articles and we had discussed it briefly. She just emailed me back that she'd gone on YouTube and found the Dr. Oz show with Dr. Donnica and Gina. I was happy to tell her that we had a part in making that happen.

I met with my Vocational Rehabilitation counselor today and also gave him copies of the New York Times articles in case he was interested in reading them.

I feel like I'm scrambling for the right info. I'll start gathering my thoughts on this tomorrow.