XMRV - Coming to terms with a new reality

[Dreambirdie]

Re: the dreams. Okay, DB, I dreamed last night that I had a nice big puppy bassett hound as a pet (I'm allergic to dogs in real life though I love them). The dog and I were in the lobby of a corporate building and had to go outside but it was raining heavily. He was on two's and my arm was around him as we walked outside and he was able to talk. I said, "We've got to get a cab." We were going to have to run for it in the rain.

Hi Jen--

I dream a lot too, and keep track daily. The best way I've found to glean understanding from a dream is to play with the images and find my associations to it. Because dreams don't happen in a vacuum, they happen within the context of your life, cookbook approaches to dreams rarely feel satisfactory in doing dreamwork. You always need to connect them to what's happening for you personally, at the time of the dream.

That said, I associate dogs with a friendly and protective instinctive energy--you know "man's best friend." When I dream of a dog companion, it's usually a reminder to me to trust my instincts and take them into account. Our instincts are often in direct opposition to the collective "human programming" we receive from the world--in your case this appears as the "corporate building," which you are leaving. Also the dog is a puppy and a bassett hound--a young energy, maybe new to you, which has a "very good nose," that "knows" how to sniff things out. Bad weather often happens in my dreams, when I'm "under the weather."

So if that was my dream, those are the ides I would play with. Make sense?

 

[jenbooks]

DB, that does make sense. The energy of the bassett hound was very friendly. The rain didn't seem that bad but we were going to get wet. I'd say the most anomalous part of the dream was being in a corporate lobby. I have no idea what we were doing there.

 

[Victoria]

No apologies needed, Islandfinn,

I just wanted to reassure you, that it's ok to talk about your health to anyone you choose - husband, visitor, friend, the supermarket "check-out chick", the neighbour next door - anyone.

And particularly on the Phoenix forum.

Everyone genuinely cares about how you are, respects your opinion & YES, we want to hear you talk. Everyone's contribution is valued & shared.

Sometimes I speak on the wrong thread or get mixed up or get a bit dyslexic with my typing.

But so what.

I love this forum & all it's members.

I've finally found a space in my life filled with people who care & understand where I'm coming from.

I work full-time & am much better than years ago, but I still have my bad days when work is too much, & I struggle in every way imaginable, but dropping into Phoenix for a chat makes the day so much easier & more do-able.

Victoria

 

[The Phantom]

Since this is a forum dedicated to digesting the XMRV news, I want to put in a plug for making our voices heard, as well as listening to our own voices. There is a place for both, and both are therapeutic and practical. So, on that note, just a reminder that there is less than 24 hours to submit written testimony to the Chronic Fatigue Syndrome Advisory Committee, which meets October 29 & 30.

Hopefully, in six months or a year we will have a new name, XAND or something else, a new definition and some progress toward a cure. Hopefully, we'll all be feeling better. But, just to help prevent the CDC from delaying progress, I hope that anyone who hasn't already sent in written testimony will copy & paste the statement below (or make their own statement) and send it to:

CFSAC@hhs.gov

before 5 pm tomorrow. (They originally said October 15, but they have changed it to October 14.) CFSAC isn't making it obvious how to submit written testimony on their website, but it looks like this is where to send it. Probably it would be best to put "Written Testimony CFSAC meeting October 29-30" in the subject line. Please alter the statement below in any way you want, add anything to it that you want, or rewrite it completely & post it if you have a better idea or a better wording. If you hate the name ME/CFS, put in the name you like. Testimony doesn't have to be 5 pages and it doesn't have to be polished. I've only written down these 3 statements because they're what seems to be most important to the people who have given an opinion on the M.A.D. forum, and, hopefully, it will make it easy for people who don't feel well enough to compose something themselves. If you're interested in more discussion of plans for the CFSAC meeting check out the M.A.D. forum. We all know the CFSAC is fairly toothless, but they're all we've got (so far). The one tooth they have is they can make recommendations to the Secretary of HHS. Please send something!

To the CFSAC:

Thank you for your service to the ME/CFS community.

I urge you to make these 3 recommendations to Secretary Sebelius:

1) No government funding should be made available for research using the Reeves (2005) empirical definition of Chronic Fatigue Syndrome. This definition has been shown to include many people who do not have the illness that has traditionally been called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. Any research done on the larger group defined by the Reeves definition will merely be confusing and will be a waste of taxpayer money.

2) The current leadership at the Centers for Disease Control that is responsible for research into the causes and potential therapies for Chronic Fatigue Syndrome has wasted the limited funds available for CFS in a misguided attempt to redefine it. Meanwhile, there have been no advances made by the CDC in our understanding of the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The leadership should be replaced.

3) If there is going to be any progress toward a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome more funding is needed. Given the new information about XMRV as a possible causative agent, it is urgent that adequate funds be allocated.


Again, send to: CFSAC@hhs.gov

Subject line: Written Testimony CFSAC meeting October 29-30

 

[Finch]

Written Testimony

Well put, Phantom, and thanks for the link.

 

[Frickly]

Phantom

Thanks for the outline. I have been a little overwhelmed about writing this letter. My daughter is in school tomorrow so I will use your outline to get started. It won't be as good as the others who have posted but will get my voice heard.

 

[Finch]

No XMRV Stigma

I just want to try to assure some of you who are concerned about a possible stigma from being found positive for XMRV that, in my opinion, there will be very little stigma, if anyl. HIV has already paved the way for people's understanding of a bloodborne retrovirus. It was terrible at first, as most of us will remember, but the understanding is much better now. We have learned much.

Also, I've had ME/CFS for 18 years, and I can't think of anyone else who might have 'caught' it from me. Whatever virus, bacteria, or malfunction has caused this in me has not spread to my husband, my relatives, or my co-workers. There's only one relative who's developed what I believe is ME/CFS (undiagnosed). Perhaps she got it from me. Probably not. Also, I don't know anyone from whom I might have gotten it. I don't know of anyone else who has it that I knew at the time I became ill.

I do understand the concern of anyone who fears they may have passed something on to their children, but even if you have, you didn't 'give it' to them. It may be a part of their makeup, as it may be of yours. If so, nobody knew about it at the time.

I hope this can help alleviate some of the fears. I really don't think the stigma is something we need to be concerned about. I'd probably be more concerned about whether people will even care at all!

 

[_Kim_]

thanks. I am happy about this finding and have donated $50 to the WPI institute. I certainly don't want to make things more difficult than they already are. looks like I should make another donation maybe for some advil for the moderators here to now.

Mark, I'm impressed by your goodwill and willingness to apologize. We are all experiencing a range of reactions and the fear of the unknown can lead to a whole lot of speculation. Jeez, even today, I had the thought, "what if I got this darn thing from the hamsters I used to keep as a teenager? I got bitten more than a few times handling them." It's human nature to want to blame our misfortune on someone or something. Before we knew about viruses, it was believed that disease was caused by noxious vapors (miasma theory). We still have so much to learn.

 

[lostinthedesert]

Bring It On

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).

I say bring it on. I may be in a different position than other people. I already live as a leper. Lost the career, house, most everything else. I was treated as deluded by my family and friends. Been homeless most of the last three years since my bad relapse. Lived two of them alone outdoors on public lands with no facilities.

When I go to town for supplies people make fun of me because I look homeless, wear a mask and they can't tell what sex I am. I have been harassed, threatened, shot at, intentionally brushed back by automobiles and more. I would gladly take all of this and more if I at least felt well enough to enjoy more things, to have a little compensation.

So bring it on. As long as someone comes up with something that gives me enough energy to take a walk in this beautiful desert or maybe takes away the pain in my hands enough that I can play music again, maybe make my digestive system work again or let me not have to wear a mask... so many more things .... If a few can be better, it would change my life drastically.

My friends who died of AIDS were as a whole treated better. Even before there were effective treatments a whole community of people rallied to provide whatever care and comfort they could. Yes, some people were phobic, some were vicious in their judgment. Resources were overtaxed but at least there were some resources and an acknowledgment that people needed help though some were left out in the cold.

So bring it on. I've already paid the price. I'm waiting for the payoff in the currency of effective treatments, access to care and other resources. Lets check back in a year or two and see if I still feel cheated.

Susan

 

[kurt]

A dream about a prison break

Last night I dreamed that I was with a small group of people who were climbing a hill. On top of the hill was a prison, surrounded by a razor-wire fence. We had wire-cutters and cut a hole in the fence. Prison guards came over and we pulled them over the edge, so they fell down the hill, and then we climbed through the hole and went on to the prison ground. Our goal was to free all the prisoners. We had the advantage over the guards and they left us alone, but there was one obstacle, only the prison warden knew how to release the prisoners. So we had to negotiate with the prison warden, convince him that it was time to release the prisoners. The warden was angry at a few of the prisoners and wanted them to suffer. We were at a stand-off. That was where the dream ended.

Any interpretation? I think this was obvious subconscious processing of the XMRV announcement.

 

[leelaplay]

I say bring it on. I may be in a different position than other people. I already live as a leper. Lost the career, house, most everything else. I was treated as deluded by my family and friends. Been homeless most of the last three years since my bad relapse. Lived two of them alone outdoors on public lands with no facilities.

When I go to town for supplies people make fun of me because I look homeless, wear a mask and they can't tell what sex I am. I have been harassed, threatened, shot at, intentionally brushed back by automobiles and more. I would gladly take all of this and more if I at least felt well enough to enjoy more things, to have a little compensation.

So bring it on. As long as someone comes up with something that gives me enough energy to take a walk in this beautiful desert or maybe takes away the pain in my hands enough that I can play music again, maybe make my digestive system work again or let me not have to wear a mask... so many more things .... If a few can be better, it would change my life drastically.

My friends who died of AIDS were as a whole treated better. Even before there were effective treatments a whole community of people rallied to provide whatever care and comfort they could. Yes, some people were phobic, some were vicious in their judgment. Resources were overtaxed but at least there were some resources and an acknowledgment that people needed help though some were left out in the cold.

So bring it on. I've already paid the price. I'm waiting for the payoff in the currency of effective treatments, access to care and other resources. Lets check back in a year or two and see if I still feel cheated.

Susan

Oh Susan - my heart is sore at hearing how difficult your life is. You must be incredibly strong to be still surviving and doing as well as you are. Sounds like you're extremely clear and quite objective about your reality without being too bitter about it. I so hope that the treatment and care that we need exists soon. You don't sound so lost to me - you're still seeing beauty in the desert. I'm visualizing you not only playing music in two years (or less), but dancing as well!

 

[Kati]

Last night I dreamed that I was with a small group of people who were climbing a hill. On top of the hill was a prison, surrounded by a razor-wire fence. We had wire-cutters and cut a hole in the fence. Prison guards came over and we pulled them over the edge, so they fell down the hill, and then we climbed through the hole and went on to the prison ground. Our goal was to free all the prisoners. We had the advantage over the guards and they left us alone, but there was one obstacle, only the prison warden knew how to release the prisoners. So we had to negotiate with the prison warden, convince him that it was time to release the prisoners. The warden was angry at a few of the prisoners and wanted them to suffer. We were at a stand-off. That was where the dream ended.

Any interpretation? I think this was obvious subconscious processing of the XMRV announcement.

Kurt, that's a very cool dream. My interpretation would be that the prison warden would be Reeves at the CDC. "The only obstacle" that's a big one... but together we can win...

Small group of people rallying- this is us!That meeting at the end of the month is where the barbed wires are, with prison guards that will leave us alone and let us express ourselves.

The end of your dream, it's all about the future- what will determine the future will be partly up to the decision makers, the researchers and all of us.

Kati

 

[lostinthedesert]

Oh Susan - my heart is sore at hearing how difficult your life is. You must be incredibly strong to be still surviving and doing as well as you are. Sounds like you're extremely clear and quite objective about your reality without being too bitter about it. I so hope that the treatment and care that we need exists soon. You don't sound so lost to me - you're still seeing beauty in the desert. I'm visualizing you not only playing music in two years (or less), but dancing as well!

Thanks for your kind thoughts and vision. I am a lucky one. I have been able to come back to some level of independence after a crash that left me floorbound. I try to not forget that there are so many others who remain too ill to get back up and that many of them have also suffered ill treatment by many of the people in their lives. My vision is a treatment that gets those folks up and back out in the sunlight, back out into life.

Lets face it, this discovery has stirred the pot for many of us. Have to take a moment to breathe and remember to be patient.

S

 

[Frickly]

Bad dream

I rarely remember my dreams but watched the interview before bed last night regarding xmrv. I dreamt that I was infected with a large bug of some sort and they had to cut it out of my back and could not put me to sleep. It was really gory.

Apparently my dreams are not very imaginative. I think we all know what that means.

 

[kolowesi]

dreams hopes beauty

Hey Frickly, I love that dream! They could cut it out, you could get rid of it. OK it might be painful

Lostinthedesert, you are so inspiring. I do pray you can have an easier life someday. Meanwhile, you are a Survivor! (how about a reality show about MCS sufferers?) I am picturing you somewhere safe and beautiful, getting stronger.

Like many, I've been up and down over the news. I remind myself that nothing has changed as far as the reality of my condition. But whether to hope or fear? Much better to enjoy the sunshine, as LITD has pointed out.

I'm so glad we have each other. That is one thing I know for sure. You guys understand!

Kelly

 

[meandthecat]

I've spent so long trying to fix it myself

I feel a bit thrown by the XMRV findings, desperate for it to be so, yet what does that mean for all the effort I've put in to drag myself back from the pit.

It seems that the closest relative to XMRV would be MLV, murine leukemia virus. This is a 'helper virus' used in genetic research to insert chunks of DNA in to target cells, often cross-species.
The close, closer than close, relationship between Cancer research, Bioweapons and vaccine development must mean that this virus was everywhere, contaminating who knows what and evolving.
Where arrogance is only exceeded by incompetence the result is disaster.

Is this a rerun of HIV

 

[brenda]

Susan

I feel a bit like you - I am reading but not really affected by it. I have already lost so much, things cannot get worse and I no longer am bothered about what is wrong with me, how many viruses or bacterium, I don't care any more nor am I scared about them. If others start to accept my illness, it will not make any difference to me - I don't care either way. I have survived without them and no longer care what they think. I am too busy with my quest for healing which is to change the terrain and then let my body deal with its problems itself. Good so far.

 

[Dreambirdie]

Like many, I've been up and down over the news. I remind myself that nothing has changed as far as the reality of my condition. But whether to hope or fear? Much better to enjoy the sunshine, as LITD has pointed out.

Hi Kelly--

Me too. Although, in my case right now, it's been the wild wind and rain that I've been enjoying.

Thanks to everyone for sharing their dreams.
It's fascinating to see how our psyches are responding to this BIG news.

 

[The Phantom]

Sarahg has posted a great CFSAC testimony statement on Post Your Submissions on the M.A.D. forum. So has Tomk and Caledonia. So, if you're looking for ideas you might want to read them. Inspirational! Part of the prisoner's getting rid of the warden, I think. Meanwhile, after reading them I've added a #4 to my much more abbreviated and sedate statement (just don't have the energy for more). Since there doesn't seem to be an edit feature on this forum I can't add it to my previous post, so here it is:

4) The proposed CDC 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.

It could be added if you want to send something in but haven't done it yet. (I haven't--there's 5 more hours....)

I agree with the sentiment that I'm no long bothered about what's wrong with me. I've been sick a while, and I've accepted it. I do what I can to get better, and, slowly, I am getting better. I trust my own intuition. This news doesn't surprise me, but it does validate my intuition. So I'll keep going with it.

 

[Forebearance]

dealing with the news

I was really happy to hear about this study.
And then after a few days, I got really depressed.
I think making our illness more 'real' makes me re-grieve it.

The deep depression lasted a couple days. Now I'm back to normal, which is cautiously hopeful.

Forebearance