XMRV - Coming to terms with a new reality

[MEKoan]

I thought we might need a place to talk about the necessary adjustments we will be making over the next little while.

And, I kept posting totally off topic stuff in the main thread

 

[InvertedTree]

Great idea.

I'm finding that I'm a bit obsessed with trying to find out all I can on this but at this point its mostly speculation so all I'm doing is wearing myself out and getting overwhelmed.

I had done such a good job at weaning myself away from doing constant research on how to become more functional than I am when the news was announced and now I've found I've returned to my old behavior.

Mostly its nice to feel a sense of hope.

I have been part of the AIDS epidemic since it began, lost a lot of friends to AIDS. Then I saw what happened to people once they found a medication cocktail that worked for them. This is why I feel hopeful. Maybe its mistaken hope but it doesn't matter, I'm just enjoying it while I can.

 

[Aftermath]

Excellent Idea...

Cort and I just had a long conversation by telephone--this topic definitely came up.

If the WPI findings are indeed replicated, and a causal link shown, life as we know it will likely have changed forever.

We will go from people that others dismissed as malingerers to being viewed as so sick that we are treated with near leper status. All of this will likely depend on just how hard that the media plays up the link between XMRV and AIDS (same viral family).

Again, the transmission issue is one big piece of the puzzle that is missing right now. Nonetheless, despite the tremendous barriers to transmission with AIDS (it dies nearly instantly upon contact with air), people are scared to death of others with it.

One of the biggest indicators will be if there is a ban on blood donation put in place against those who test positive for XMRV.

Again, excellent thread. I'm sure it will grow with lots of excellent info when we learn more about which of us have XMRV RNA present in our bodies and the relationship between this and illness.

 

[Andrew]

I spent so much time looking up information on the XMRV I ended up crashing. This is the worse CFS crash I've had in a long time. Luckily my caregiver was here today and she helped me get my bills paid, etc.

Anyway, I can't read the many messages and I can't find out what I want to know. But I just wanted to post so I could feel connected to all of this.

 

[leelaplay]

people's responses

I thought we might need a place to talk about the necessary adjustments we will be making over the next little while.

And, I kept posting totally off topic stuff in the main thread

this might be the location to post this rumination. I find the reactions of others more complex than anticipated. Granted, I was so excited at even the glimmer of a future chance of finding a cause, let alone a cure, I, without thought, fired it off via email to the 20 or so people I thought would be thrilled. Only a few replied - most positive, but short. I pondered on that a bit and realized that retrovirus and reference to HIV AIDS might scare a lot of people off - wondering if I'd passed it to them........wondering.....what? Spoken to a few people since Thursday - some avoided bringing up the topic completely and I let it be. Then tonight at dinner with a few of my partner's family,talked a bit. Later, my partner queried my need to bring ME/CFS up in conversation - not only at dinner, but in many situations.

At the beginning, know I made a point of telling everyone about it. Part of the reason was that felt I was part of an invisible epeidemic - and people either didn't know about it (I'd never heard of it before getting it) or were misinformed - often negatively. At times I felt it necessary for the other person to understand my limitations so that I could work successfully with them - eg bank manager. THink part too was that I was sort of apologizing for my lack of______ (whatever I was lacking at that moment - thought, movement, speech, ability to read, ability to listen, emotional control......). But did go a bit overboard probably and mention it to everyone - salesclerks, cashiers, neighbours etc. Sometimes just so happy to be out of the house and talking with someone my "appropriateness filter" doesn't work.

Think my partner has a point that often people just don't care and/or will often draw the wrong conclusions. And now that "scary" terms and the transmission question can arise - even more so. So I guess one of my necessary adjustments is learning to be more guarded in who I talk to and what I say - to try to think before I open my mouth.

 

[Aftermath]

Hang In There

I spent so much time looking up information on the XMRV I ended up crashing. This is the worse CFS crash I've had in a long time. Luckily my caregiver was here today and she helped me get my bills paid, etc.

Anyway, I can't read the many messages and I can't find out what I want to know. But I just wanted to post so I could feel connected to all of this.

Andrew, hang in there brother and get some rest.

Short Synopsis for when you feel better:

- WPI researchers produced a landmark paper that was accepted for publication in Science, one of the most prestigious journals in the world. It was published last week.

- The paper suggested correlation between a newly discovered retrovirus called XMRV (there are only 3 others--AIDS is one of them) and people w/ ME/CFS.

- Interviews w/ the WPI people suggest that later work after the paper was written indicates to them that there is not only correlation (a relationship) but causation (XMRV is the cause of ME/CFS). More work will be required to conclusively establish such a link.

- Tests for XMRV are not yet available to WPI standards, but will likely be out within six months. Clinical trials of anti retro-virals similar to those used for AIDS are also expected to get going in this time period.

That's all that you need to know for now. As soon as further info becomes available, Cort and I will post it in this forum.

 

[bluebird]

What's 'real' even mean anymore?

I thought we might need a place to talk about the necessary adjustments we will be making over the next little while.

And, I kept posting totally off topic stuff in the main thread

Yes, I've been so high from the validation I felt when I first read the headlines that I ignored all and any objective reasoning skills I may still have left. Today, I tried on objective reasoning, and didn't find the results nearly as appealing as I had hoped.

Long ago, lol, when I was still fairly well and a reporter, I visited a woman who suffered with 'Lyme Disease'. I ended up doing a series of articles on that illness. I won the Texas Medical Association's Anson Jones medical writing award ( per small newspapers) for simply reporting what 'he said' and 'she said'. I was objective. Just the facts as they came in, etc. Thing is, I don't know if any of what anyone SAID was even true.

I mean, I talked to a microbiologist, an infectious disease epidemiologist with the Texas Department of Health's Infectious Disease Epidemiology who told me that when she worked in pathology for 'a state', she found Lyme spirochetes in dozens and dozens of bodies of persons who she said were clearly wrongly diagnosed with Multiple Sclerosis, but was told by the state to stay silent on this, and to list the official cause of death as Multiple Sclerosis, to not inform the families. This woman is very credentialed. She volunteered this information. I believed her. Sure raised some questions about the politics of medical information.

So, yeah, I keep replaying this in my head. And I keep wondering who has vested interest in what, and where XMRV will lead us.

The reason I was even thinking about Lyme disease is the connection between ticks as vectors, mice and... xenotropic murine retrovirus.

I know so many who 'have' Lyme disease, who suffer tragically, yet I note that its not fashionable to have Lyme disease anymore. ( What up with that?) Doctors are now saying that Lyme spirochetes are goners from the first round of antibiotics. But I note that the patients are not getting well. hmmm~ What if the spirochetes were never the problem? What if XMRV was?
Or what if the R Nase L enzyme is the culprit? Mitochondrial abnormality/immune deficiency first, at the headwaters, and then the cascade of insults downstream?

I pray that XMRV is key to many doors. Some seem deliberately locked.

Learn more about ticks as vectors, and the faces of Lyme Disease here:

http://www.lyme.org/ldf/rawlings.html

Bear with me, please. I am practically braindead. Seriously.

Delete the post if you think it makes no sense...

Just thinking out loud and without very many brain cells.

 

[Michelle]

LOL -- I crashed too after spending too many hours reading and writing about this on Thursday and Friday. I was so sick yesterday I could hardly sit up. Which left me with hours to lay in bed and contemplate just how much this might change things all the while being too weak to write any of it down.

Maybe tomorrow. ;-)

 

[Advocate]

"If the WPI findings are indeed replicated, and a causal link shown..."

Mary Schweitzer has written that we should watch out for a trap: ""Beware of falling into the trap of requiring XAND to equal CFS, because it makes it all too easy to dismiss it - even without using Reeves' cooked data sets."

 

[Finch]

"If the WPI findings are indeed replicated, and a causal link shown..."

Mary Schweitzer has written that we should watch out for a trap: ""Beware of falling into the trap of requiring XAND to equal CFS, because it makes it all too easy to dismiss it - even without using Reeves' cooked data sets."

My worry, also, Advocate. Some of us are simply assuming that because this has been found it will be the answer for all of us. If we do not test positive, will we then be devastated and discouraged once again, when maybe we should really be relieved? It seems as though many are assuming already that they have it and are making big plans on how it will change everything for them. It does make a change for ME/CFS in general, but indivuals who have XMRV infections will be in a whole new playing field, and those who don't will still be where we are now. Hard questions that only time will answer.

Can you tell that I'm very used to being told I have normal lab results?

 

[jenbooks]

Bluebird

Bluebird your post made total sense and I've wondered exactly the same. I can't tell you how many times I've said "Whatever I got in that tick in 2000 had something really bad--" Maybe it was XMRV. Maybe that is the gatekeeper and not borrelia. Who knows.

 

[Dreambirdie]

remembering to breathe

"THE MASTERY OF LIFE IS KNOWING WHEN TO STOP."

I think that's an Alan Watts quote. I am making it one of my favorite mantras for the time being.

Anticipatory anxiety can be VERY draining, and is not very constructive. In fact it is very destructive for me when I jump into it and let it take over my thoughts. I can't afford that right now (or ever!), so I'm going to limit how much time I spend online.

A couple days ago, Jody said something wonderful about how: "we can choose WHO we give air time to." On that same note we can also choose WHAT we give air time to.

In the mean time remembering to breathe is a high priority.

 

[jenbooks]

gotta stop....

I have to stop obsessing!!!!!!!!

I have work to do. Please, dear mind, focus on work. Thank you.

 

[MEKoan]

Anyway, I can't read the many messages and I can't find out what I want to know. But I just wanted to post so I could feel connected to all of this.

Thank you, Andrew, for posting this because it's just what I was feeling and I would bet we are not alone!

You are connected! Rest up!

Steam is comming out of my ears and smoke from my eyes

Oh, I hve not yet read this entire thread but I am anticipating many people saying that we do not yet know what this means, if much at all, and I agree.

Don't Know Mind.

Koan

who can't help but be hopeful

 

[Kati]

Can you tell that I'm very used to being told I have normal lab results?

Do I ever relate to that, Finch??? This is why I want to get tested. Other than EBV which is how my disease started- I haven't been tested for other viruses, and despite me asking, my dr prefers to wait for a specialist to do that. (Sigh, I don't even have an appointment to the specialist)

The tests I have had, CBC, Mg, TSH, CRP, Holter, EKG have all proven normal. They are certainly not the right tests to prove the disease. I am after CMV, HHV-6, EBV and now XMRV. I certainly have hope that these will prove that yes indeed there is something to explain all the symptoms I have in my body, and that there is a treatment in order for me to feel better and recover my life.

It feels like every time a test comes back normal, a part of me doubts more that someone will ever find something to back up my crappy symptoms. But it's just a matter of being hooked up with the right dr and getting the right tests done.

 

[MEKoan]

And now that "scary" terms and the transmission question can arise - even more so. So I guess one of my necessary adjustments is learning to be more guarded in who I talk to and what I say - to try to think before I open my mouth.

Hey Islandfinn,

I do hope you cut yourself a whole lot of slack for wanting to talk about something which has hijacked your life and which, you know, is completely misunderstood.

I don't know how long you've been sick but after the first decade I stopped wanting to talk about it at all. Now, outside of forums like this, I can hardly bring myself to mention it. I can't even talk about it to my doctor. Thinking about it makes me want to lie down on the floor.

So, your ability to still address is may just be a sign that it has not completely eaten your spirit.

That said, you make a good point. Other people just aren't all that interested. I never mention it and, even though my friends never see me, none have contacted me since the news broke. I'm assuming they didn't see it. It just isn't big news for the rest of the world.

Swine flu is filling everyone's infectious disease thought receptors. As well it might.

This is just a snowball now. There may be an avalanche.

Gosh, English is such a hard language! And, it's the only one I know

 

[MEKoan]

Belief, Disbelief and Knowing

Quarrels have broken out all over the www.

Patients struggling with the same, or very similar, symptoms are choosing sides and digging in their heels.

Members of support lists are calling members of other forums foolish.

Researchers are slamming other researchers and patients are taking swipes at other patients.

Someone remarked to me in an email this morning that Cort's forum had become the best on the net. I think that's absolutely true.

This is a place where we can believe or suspend belief and be understood. This is a place where the ego is not overtaking rational thought. This is a place where cautious optimism is expressed freely and, if that's not what you feel, that's ok too.

There is always a slump after great excitement. Anyone who has ever been on a honeymoon can attest to that.

We will all ride this out with common sense guiding us.

Thanks for being the community you are.
Peace out,
Koan

 

[Dainty]

I don't know about everyone else, but for me, to some extent, I'm allowing myself to get my hopes up a little more than I would otherwise simply because I'm in this group, and if our hopes are dashed, they'll be dashed together, and we'll go through it together, you know?

 

[Frickly]

Koan

I sent an email to my dad, mom and sister with some info regarding this newly found virus. I told them that I have noticed very different reactions from the CFS group from joy to sadness. However, I beleive we all have one thing in common. We all feel validated.

I am glad that we can all voice our feelings and thoughts here without being attacked. Thanks Cort!

 

[MEKoan]

I don't know about everyone else, but for me, to some extent, I'm allowing myself to get my hopes up a little more than I would otherwise simply because I'm in this group, and if our hopes are dashed, they'll be dashed together, and we'll go through it together, you know?

Yes, I know! I have thought the very same thing.