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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The emotional impact of XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by Andrew, Oct 31, 2009.

  1. serenity

    serenity Senior Member

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    Austin
    thank you Kim! i so appreciate that! that is what i'm wondering, am i so far behind - but where are the other newbies like me who just heard? where are their questions?
    you have absolutely answered my question very well tho, i thank you. so you are telling? i am not, not yet. i want to, but my husband is quieter about things than i am & i dont' know the implications of talking yet & do not want him any more taxed than he already is by my illness.
  2. ukxmrv

    ukxmrv Senior Member

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    Dani, I think that after an initial tidal wave of excitement, people were just too ill, weak and sick to maintain the momentum.

    The CFS internet groups have changed dramatically for me. Once old-timers like myself were not welcome on some groups to talk about things like retroviruses. We were ignored and thought to "pessimistic" or what we said was just too outragous. Now this talk is common and people want to know the history. Some of the "snake oil" sellers and their supporters have gone to ground.

    Now, there is a steady buzz about XMRV but many people are waiting for the original findings to be replicated for waiting for themselves to be tested. For months the internet groups have been full of it.

    Some people are now trying to recoup their limited energy after the excitement of the news.

    That means to new people that it looks quiet. I don't think that it is. A lot is going on underneath the surface. Families are talking about it and the implications (serious). Emotionally some people have found this very hard to cope with and have gone quiet.

    It also doesn't help that testing is very slow and not many people have been tested yet. I was tested and am positive. Been through a rollercoaster couple of months of emotions. There have been weeks when I have found it difficult to cope with the news.

    Because people have been disappointed before and testing is slow, individuals do not know if they have the virus or it is still something else.

    Many people are looking critically at the science and I've been told by other sufferers that they cannot begin to hope in earnest until the original research has been replicated.
  3. Andrew

    Andrew Senior Member

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    I've been trying to get my head around why this isn't bigger news. For example, XMRV was discovered in prostate cancer in 2006. That's about four years ago. Yet, I have personally asked two leading prostate cancer experts and one general oncologist if they heard of XMRV. They had not.

    The thing is, we eat, sleep, and breath CFS. So once we find out about XMRV we search the Internet, go to forums, etc. and find out all about it. We are so saturated with news we can't comprehend that the world isn't shouting about this. But they are not. A few TV shows and magazine articles are not going to make this big news.

    The other thing is, even though I think the Science study is top notch, we still don't have any more studies that show a correlation between XMRV and CFS. And that is sure putting a damper on my spirits.
  4. serenity

    serenity Senior Member

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    Austin
    thank you guys for your kind repilies.
    ukxmrv, i can understand what you are saying. thank you. i can understand the shock. my husband prefers i wait to be tested & i am respecting his wishes.
    & yes i've been called a pessimist too.
    Andrew, yes, the study not being confirmed yet is disheartening.
    i just still can't get why people aren't talkin more but you guys are beginning to help me understand.
    thanks so much.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    XMRV will Crush Wessely if it Pans Out.

    Min- I'm sorry you're in this situation. I feel trapped in a Kafkaesque nightmare sometimes and it's nothing compared to what the severely afflicted "25%" in the UK like you go thru.

    The situation in the US seems to be getting a little better e.g. Reeves transferred, WPI coming out swinging. We've got to ensure the new permanent person in Reeves' old job will be good- everything will flow from this. If XMRV pans out then this will probably happen and we'll get much more money from Congress. I am fairly confident XMRV is there in ME and is a cause IMHO (though there are probably other retroviruses like CAV and JHK present which are probably also causative IMHO).

    Then we can ALL focus our effort on getting rid of Wessely et al. The cause so much damage to everyone around the world with ME. With XMRV, Malcolm Hooper and us all united we CAN do this. The fact that NHS policy is so extreme makes it easier to attack with the truth. It's a dam ready to burst at some point, we just have to keep chucking dynamite at it. Stay strong.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, Koan, I totally agree. It's in 4% of normals and in prostate cancer. There will be a public uproar.

    Wessely will be crushed.
  7. moonchild

    moonchild

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    i've been finding it an emotional roller-coaster too...seems to make it all more real somehow. although i knew what was happening to my body was serious ( i was bedridden and on highdose morphine for years) i think i was still in denial to a degree. since the XMRV info came out i've been on a bit of a journey towards acceptance. for me one of the hardest things about this has been the idea of transmission and the implications for having children. not that it's an option at the moment anyway but it's seemed at once to be very final and also up in the air...great sense of loss and grieving that has come with that part of it.

    still no word at all on testing here in australia but i think i'd be inclined to wait in any case until it all unfolds a little more. have also been quite confused by some opinions i've read which seem to downplay the importance of the discovery (most recently cheney in osler's web), believing that it is what happens to the body subsequently that becomes more important.
  8. starryeyes

    starryeyes Senior Member

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    ladybug,

    I think your point about HTLV not being discussed much yet being screened for in the blood supply is well taken. I bet that will be the fate of XMRV. I think that's much more likely than for it to become well known and feared like HIV is. Part of that is because most of us look well and seem to be okay to the outside world.

    Personally, what I want out of the XMRV finding is treatment that works. To me, that's the most important thing.
  9. serenity

    serenity Senior Member

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    Austin
    thank you yes Ladybug is see what you mean.
    Monnchild, i can relate to your issues. thank you for voicing them.
  10. serenity

    serenity Senior Member

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    Austin
    i told my doc today, he was interested - had not heard of XMRV but said he would look it up.
  11. Abraxas

    Abraxas Senior Member

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    Hi Andrew, I just saw this thread, after hearing earlier today that you have just received your XMRV results and tested positive.

    Wow, you had a long wait, given that you started this thread back in October when your blood was drawn. Hope you are OK? Please let us know how you feel about it all, once it has sunk in, and when you are up to it. :Retro smile:
  12. Andrew

    Andrew Senior Member

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    My October blood sample got ruined. I had another one a few weeks ago. Right now I'm trying to sort things out in my mind. Having XMRV is not a shock to me now, because I've had a chance to get more used to the idea. What is forefront in my mind right now is the fact that I have prostate cancer that is believed to be very low grade. XMRV was found in association with aggressive prostate cancer and RNaseL problem. I also have RNaseL problem. So how does this change how my prostate cancer is being managed.

    Plus the fact that I am still not recovered from being treated for tongue cancer in 2008. And how could I manage something extreme being done for the prostate cancer.

    And then, what kind of help can I get with this. My prostate oncologist never heard of XMRV. My CFS doctor doesn't know much about CFS. So who is the professional I can turn to for guidance. The weight of all this is hanging heavy over my head right now.
  13. shrewsbury

    shrewsbury member

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    Oh Andrew - I can imagine that it's hanging heavy. It's so tough.

    I hope someone on the forum knows of a prostate oncologist who is aware of XMRV and ME/CFS, preferably in the LA area.

    :hug::hug::hug:
  14. _Kim_

    _Kim_ Guest

    Andrew,

    I am so sorry that you are in this position of not having good medical support. I hope that your oncologist gets on board quickly. Is there anything that we can do to help you prepare information for him/her?

    You are in my thoughts and prayers.

    Love,
    Kim
  15. Abraxas

    Abraxas Senior Member

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    ((Andrew)) You've been through and continue to go through such a lot. :worried:

    I would hope that the confirmation of a postive XMRV test would prompt your doctors to quickly find out more about how they can help you, or refer you to someone who can, especially given the links to both prostate cancer and ME/CFS.

    I hope you get some good info regarding the antiretrovirals you were asking about, seems it would be the way to go for you, if you could manage to tolerate any. Keep us informed, and remember we all all here for you (in chat too) Hugs to you.
  16. Jerry S

    Jerry S Senior Member

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    Wishing you the best, Andrew.

    Take care,
    Jerry
  17. dannybex

    dannybex Senior Member

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    My goodness Andrew...you are a courageous man...an inspiration.

    My suggestion (if this is even possible without knowing more) is to FIRE your oncologist. If he isn't up to speed on 'news' that is 3 years old, he shouldn't be advising anyone.

    My best regards,

    Dan
  18. jimbob

    jimbob ME/CFS84-XMRV+

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    sending you good thoughts from the east coast, hang in there my friend!
  19. jackie

    jackie Senior Member

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    andrew...I've been thinking (I know you can't GET to him) but what about contacting Dr. Peterson directly (or have you already done that? sorry..but I may not have kept up with your latest posts!)....with the details of your particular "case"?

    If you haven't been brought to his attention yet...I'd hope he would be interested in you! and can perhaps advise you about finding someone knowledgable close by. Or dr. Judy? OR if that doesn't work...Dr. David Bell (his e-mail is available). Or Dr. Klimas? or Dr. Donnica Moore, even?

    Contact ANY of these guys (as well as Chia) sort of "off the record" with your story (a detailed e-mail might be good asking for some "guidance")

    But the first choice would be Peterson...I mean, after all!? I'd be glad to put together e-mails/ph#'s if you like. I'm sure this probably takes energy you simply don't have.

    I know you are presently being treated by your own doctors for several conditions...but what you are asking for is some direction regarding your unique situation.

    (better yet...YOUR doctors should be contacting one of the "experts" and having a little phone "consult" as to how to best help you! I know, in a perfect world...but they SHOULD!)

    Maybe we can all put our thoughts to this..these are difficult waters to be navigating on your own.

    Does this sound like anything you're interested in? Or other ideas, anyone?

    j
  20. serenity

    serenity Senior Member

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    Austin
    i'm beginning to really apprecaite Kim's "shock 'em" theory.

    "I prefer the sensationalist, yet scientifically accurate approach. I drop words like: cancer, blood supply, transfusions, asymptomatic carriers, and sexual transmission into my little spiel. When they get that LOOK on their faces, I know they won't forget about it. "

    i love it, i admit i am starting to take sick pleasure in throwing out that sort of thing when people ask me if i've just tried the latest fad herb or device out there - which is daily. it's kind of fun to go "in the same family as AIDS" & watch them shut up - fast! haha!
    yes folks, real very real disease - & yeh, when they find out it could actually mean something to them, suddenly they kinda take notice dont they? dont' want to sound so jerky but i've been ignored for a long time, i deserve to get a little pleasure out of - how did i hear it said here in another thread? - making them "choke on their toast". haha! ;)

    but i do have a tough one i could use help on, i have seen some of the posts here about acupuncture & it's dangers. i have a friend who is really on me to go to her guy & i dont' know how to get her to understand that i just dont' believe in it.
    she just thinks herbs are where drugs come from anyway - & i don't know how to say "look, you dont' give a cancer patient a salad & tell them they'll be fine."
    dont' get me wrong, i'm willing to try acupuncture - again. i'm willing to take herbs. i try to eat well, as best i can - whatever. but how do you get them to understand that is not a treatment for a retrovirus. you dont' give that stuff to AIDS patients & send them on their way.
    docs do SOMETHING to the drugs to make them bigger badder faster.
    anyway, i'm not scientist-y like some here so wondering if i can get some help.
    thanks
    :)

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