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ME/CFS: A disease at war with itself
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XMRV - Coming to terms with a new reality

Discussion in 'XMRV Testing, Treatment and Transmission' started by Koan, Oct 11, 2009.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    delayed emotional reaction?

    Is anyone else having a delayed emotional reaction to this stuff? I woke up with a screaming nightmare the night before last and yesterday evening and today am just a bucket of tears!

    I am not sure what the emotions are about, so I am just watching them play out and hoping they will reveal their identity.

    At first I was reading everything that came out, now I am in an "I can't take anymore of this--whatever it is" state.:eek:

    Funny that the strong emotions, for me took several days to manifest--anyone else?

  2. Kati

    Kati Patient in training


    Sushi, I also had dreams last night, I didn't wake up emotional or anything, but it felt to me as my brain was trying to make sense of it all. I dreamt that I had a really bad flu, was very sick for a while, then I infected about 8 people around me including my mother (who is dead for 20 years now) and some of them were mad at me, and 2 children that were nosebleeding, which I was suspecting they were on their way to get leukemia.

    For me it was not really strong emotions, just the intellect trying to process.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Hi Kati,

    And last night I dreamed I was pregnant! With what! XMRV???:eek:

    In the dream I was also in a "strange country" where they weren't very good at delivering babies--and there was a blizzard while trying to get to the hospital. The subconscious is sure interesting territory. I guess it often presents our emotions in metaphors that entice us to unravel their meaning.

  4. Dainty

    Dainty Senior Member

    Washington State
    m1she11e, I understand your hesitancy to shout the news from the rooftops, so to speak. So far I've only told people that I know would be close enough to understanding that they would realize this is a big deal to me and at the very least be interested in hearing it.

    For everyone else, I'm waiting for it to hopefully hit big time when the results are reconfirmed. If the CDC and all the news places are doing the "shouting from the rooftops" then I can save my energy and wait for the naysayers to contact me. It's one thing to try to convince someone that something is big news...it's quite another if the entire public is already freaking out about the big news. The latter is much more believable. :p
  5. Kati

    Kati Patient in training

    LOL Sushi!!!! So... boy or girl? hehehe...

    Thanks for the good laugh-and thanks for sharing. it's a very interesting dream, and certainly with deep meanings. I am sure others in here have had similar dreams!
  6. Sicktoolong


    I am also concerned about being a leper

    My son sent me an email of the link to the NY Times article; nothing else. Not like him. (He's an adult and married). I know he is thinking of the transmission and AIDS "connection". I am mortified. I am concerned my boyfriend of many years could freak out and leave me. I am worried I will lose my business. I iwsh they would stop talking about transmission. I never got anyone sick since I got sick in 1989. I know for a fact that someone gave me CMV, and know other couples who "got very sick" at the same time. I "think" there may be an infectious time, and then it passes, like many illnesses. Perhaps, you also need a genetic predisposition. My great uncle who is now deceased had this illness as well. I hope that is the case. I am paralyzed with fear about what others will think. I went to work yesterday and today, worried People would bring it up. Nothing happened. I have only discussed this with a friend with this illness and my mother. Thank God for Mothers, no matter how old we are, or they are. They should not discuss transmission unti they know absolutely and for sure. It is not fair to us. Conversly, it is a way to get funding for research if it is a public health issue due to transmission. Dr Campbell's natural treatment says that the AIDS treatments are not good. I do find that the amino acids help.
  7. _Kim_

    _Kim_ Guest

    A big let down

    I have a friend who is the county epidemiologist. I sent her an email today, telling her that I had to take a leave of absence from school and asking if she had heard anything about testing for XMRV yet.

    She wrote back: I'm so sorry you feel so bad. I don't know anything about either XMRV or CFS, but when I did a search of experts, this site came up....it's in NJ....followed by a link to Dr. Podell.

    Maybe she only gets her information from the CDC :(
  8. Kati

    Kati Patient in training

    Sicktoolong, I don't think the WPI meant to create panic in people. We have just got some very good news and give us grounds for celebration- there is now a known association with a retro-virus. I am a registered nurse, have worked in close contact with HIV patients and they are just like you an me, human beings. I have drawn some blood from them, gave them a hug, shook their hands, and didn't get HIV. Universal precautions makes us handle blood and body fluids wearing gloves. That's all. While we don't exactly know what the transmission mode of XMRV, we know for sure it's not in the air and not transmitted just like the flu is. Ther emust be another factor involved, or a predisposition.

    When I got a needlestick injury, I got given the option to go on antiretrovirals in prevention, but the patient I got the needlestick from was low risk so I didn't. I would not hesitate to go on Antiretrovirals for XMRV if I knew it would give me my life back. Side effects are only possibilities, and everybody reacts to medication differently.

    I hope this helps.
  9. Dreambirdie

    Dreambirdie work in progress

    N. California
    Hi Sushi I've been doing dream therapy work for many years, and yes you are right on, that the psyche speaks in metaphors--which appear as pictures in our dreaming minds. SO with that said, I can't help but share my 2 cents. :)

    Whenever I dream about being "pregnant," it usually means there is some creative seed or important idea that's developing inside me, and that I will have to "wait and see" exactly what it will be born into. Being in a "strange country" happens a lot in dreams and usually refers to entering a place of uncertainty, which you (and we all) sure are, given our brand new foreign territory of the XMRV virus! Blizzards make for "unclear visibility." And yes--no one has a clue yet "how to deliver" this new seed of information to us. We are in the delivery room, waiting for the WHOLE THING TO COME OUT, and it might be a while--9 months? a year? or more? before we have many of our pressing questions answered and know how to proceed.

    Until we do know, it seems like we are all going to have to get more comfortable with not knowing.

    In many ways your dream is "pregnant" for all us who are in the same predicament. Thanks for sharing it.
  10. Frickly

    Frickly Senior Member


    I can relate to your range of emotions except I think I went through all of them in a span of about ten hours.:eek:

    I have only told my mom, dad, sister and husband as I am unsure of others reactions. However, my biggest fear is that I have given an infectious disease to my children. It's difficult to even think about what this could mean for their future health and relationships. Also, I worry about my husband and what it could mean for our family if we both are sick.

    I hope we don't have to wait too long to get some more answers.
  11. Snickers


    Virginia, USA
    M1she11e...I definitely understand where you are coming from on this. I have some similar feelings about it. I have read the info about XMRV but I am taking a wait and see approach. Like you said...there have been too many other viruses and pathogens that were supposedly the key to CFS only to find out that they weren't the key at all or were just a small piece of a bigger and still unknown puzzle.

    First others will have to confirm the WPI findings, then if it is confirmed they still don't know what that means. They will still have to figure out if XMRV is the actual cause of CFS or if it is just another opportunistic infection that is found in most CFS patients (like HHV6 and EBV etc etc etc). Then IF it is actually the cause of CFS then they still have to find a treatment that works for it.

    So there are still a lot of unknowns here and a lot left to be done. I am also not trying to take away from the excitement that everyone is feeling. I really do hope that they have found the cause of CFS. I am also extremely grateful for all of the research that WPI is doing for us. It is great that there is someone out there fighting for us and looking for answers. I am just saying that personally I am not going to get myself too invested until we know more. There have just been too many let downs before.

    I am glad though that this is bringing some attention and possibly some validation to CFS. That is always a good thing and I am excited about that aspect of this.

    Take Care Everyone!! :)
  12. Advocate

    Advocate Senior Member

    Cort, I am wondering if we can have an "Action Suggestions" thread here, as others might have many more ideas for spreading the word other than what I have done today. I feel that the more stones we overturn, the more action will have to be taken. [/QUOTE]

    (Administrator: How could I have made the above quote from Marian appear in a gray box the way everyone else's does?)

    Hi Marian,

    Did anything ever come of your suggestion, above? I'm greatly feeling the need for something like this. This morning I submitted the following to a CFS discussion group I've belonged to for about 13 years, and it was rejected because "Political action is not allowed on this list."
    It might help if the New York Times got thousands of letters in response to the story in today's paper, Is a Virus the Cause of Fatigue Syndrome?.

    The story: http://www.nytimes.com/2009/10/13/health/13fatigue.html?ref=health

    Letters to the Editor: The URL is <letters@nytimes.com>

    I have always appreciated it when someone suggested something I could DO about the situation, and now, for a short period of time perhaps, we have an opportunity to do something.

    I'm reading through all of the posts and jotting down the names of people who have indicated they want to help bring about change.

    I wish there were a good Yahoo list. I'm having trouble catching on to the mechanics of this one--though I'm extremely happy with the attitudes and knowledge I find here...and with Cort's leadership.

    Sue B.
  13. shrewsbury

    shrewsbury member

    re post #36

    Thanks Victoria for your very thoughful post #36. It means a lot to me to, grasping for words here, I guess to be understood, to hear from someone who has similar experiences and their thoughts on them.

    Was I off-topic in saying that grappling with how to, who to, when to communicate info re xmrv & people's responses is challenging - a continuation of / a twsit on the same difficulty I've had since the onset of ME/CFS - the interface with the outer world. If so - apologies to all.
  14. shrewsbury

    shrewsbury member

    hee hee


    you've got a wicked sense of humour - gotten a couple out loud chuckles from me. Amazing how that lightens things thx!
  15. jenbooks

    jenbooks Guest

    Re: emotions--Sushi I cried a lot on Saturday although I was also very PMS and about to get my period and eating potato chips and bacon...

    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.

    I have so many dreams every night. Often I can find various triggers in the daytime--things I've read or thought or encountered. To some extent dreams can be your brain making connections, pruning, laying down memories etc--a kind of filing system at night. OTOH I've had the occasional mystical dream. But many of my dreams just seem ODD. I have no idea what my dream meant.
  16. Aftermath

    Aftermath Guest

    Red Cross and Blood Donation

    Excellent idea, but sounds like you were talking with someone too far down on the totem pole.

    Nonetheless, it's a great strategy. A better tack on it would be to write the national--perhaps we can even find the name of a scientist who is in charge of their blood bank division. Short letters with just the right buzz-words (e.g. new AIDS like virus, etc) may be just the ticket.

    It may be more cart before the horse stuff--again, we will have to see if the study can be replicated. Still, if those with XMRV are barred from donating blood, it is a pretty good indication that the powers that be cannot ignore this any longer.
  17. Aftermath

    Aftermath Guest

    Conspiracy Theories


    Please do not panic people with conspiracy theorist nonsense.

    None of us are getting rounded up and quarantined.

    Reeves and his ilk are incompetent bureaucrats, but to suggest that this is an intentional cover-up with quarantine camps are on the way now that the cat is out of the bag is absurd. Completely absurd.

    If this illness was highly contagious, transmission to family members and other caregivers would be common instead of the rare occasion that it is right now.

    Hanlon's Razor is very apropos here: never be quick to attribute to malice that which can be adequately explained by stupidity.

    Again, all points of view are welcome here. Nonetheless, I urge you to avoid causing a panic among our readers with absurd suggestions like mass quarantines.
  18. Martlet

    Martlet Senior Member

    Near St Louis, MO
    I feel as if I am on an emotional roller-coaster. The only people I've talked to are my husband, one of my daughters (by email), a good friend who is a Catholic priest and one female friend. Hubbie and priest were excited. Daughter a bit "oh-hum." Friend "happy" for me.

    People just can't understand how important this is to us ... and I can understand that.

    What I was not prepared for though is this personal roller-coaster, where I am excited one moment, then thinking of all the possible implications the next.

    Like some, I wondered if I might have passed it to my kids (my grandmother had "fibrositis," which we now call fibromyalgia) but then realized that I would drive myself mad thinking that way. After all, if something is genetic, someone before us gave it to us. And if it is contagious, we cannot hold ourselves responsible for passing on what we did not know we had, any more than we can hold responsible anyone who may have unwittingly passed it to us. So that one is dismissed as an attack of pointless guilt that does no-one any good.

    Like others, I have worried about the reaction people may have to the thought of us having a retrovirus. It was bad enough, just after we moved here from Britain, to be told by my sister-in-law that none of the family visited me - even though I was virtually bedridden in a strange land - "because, well, it's an immune problem, isn't it?" I have decided to handle that one by having a t-shirt made, if I test positive, saying "Proudly XMRV-Positive. Get Over It."

    So, coping with some aspects, but I still find myself uncharacteristically close to tears from time to time, and desperate for even more information. 'Course, that could be because I have a colonoscopy coming up on Thursday :(, only six months after my last one, and fear of that may be mingling with all the rest.
  19. markmc2000

    markmc2000 Guest

    please delete that remark. that was out of line


    I'm terribly sorry, that sounded terrible. I'd would be would happy if you delete it altogether.

    I always embarass myself in these dang chat rooms. :eek:
  20. Aftermath

    Aftermath Guest

    No Problem

    Don't worry about it, we all learn from our mistakes.

    Just realize that we have some very sick and frail members who have this forum as the only contact to the outside world. Scares like this are the last thing people like this need.

    Moreover, I tell everyone to keep in mind what impression an impartial observer (e.g. someone who is on the fence about ME/CFS being real) might take away from your posts.

    With the paper published in Science last week, the world suddenly has reason to start taking us seriously. I urge our participants not to undermine the hard work of the WPI Researchers by letting this forum degenerate into conspiracy theorism.

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