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The emotional impact of XMRV

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

  1. Andrew

    Andrew Senior Member

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    My doctor ordered an XMRV test. He drew blood two days ago. It feels weird to see the possibility of having a retrovirus as a good thing -- as something that might lead to a solution. It feels weirder to ponder that I might be worse off if I don't have a retrovirus, because then I might end up more marginalized than before.

    My emotions have been running all over the place since the XMRV announcement. Anyone else going nuts?
  2. Nina

    Nina Senior Member

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    Tell me about it! I'm on a rollercoaster ride ever since I heard the XMRV news.

    I know I'd definitely prefer having it, at least if it was proven to be causative in CFS. The worst thing about this whole illness is not knowing what it is and the lack of acknowledgement that this brings.

    Fighting against an enemy without a name is so frustrating and makes me question myself over and over. I don't know about everybody else, but the disbelief of my environment really rubs off on me sometimes. Granted, I just need to climb a flight of stairs to know for days that I'm not imagining this but having a piece of paper that proves that I am indeed and officially sick would make my life a lot easier.

    Someone compared having XMRV to HIV/AIDS and that this could be turning us all into social lepers, but I can't imagine it could get much worse. I'd rather be a social leper with a right to receive help and medical care.
  3. Koan

    Koan Be the change.

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    It is a deeply crazy situation. I'm trying to get to a place where I won't be thrown, either way, when tested. Well, I'm trying to get to a place where I will be able to recover quickly when I'm thrown.

    In my case, not being able to afford to be tested, gives me time to do this.

    It's kinda like emotional dressage.
  4. Min

    Min Senior Member

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    I'm in despair that the test is not available here in the UK and that UK doctors are not permitted to prescribe antiretrovirals for ME/CFS.

    I know that the UK psychs will move no stone unturned in order to discredit the WPI findings.

    I've been severely affected for 22 years.
  5. margib

    margib Senior Member

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    hey everyone & Andrew, going nuts myself. Trying not to. On the wait list for the test. Hoping I haven't infected my babies. RedLabs told me the test will be available in 6 weeks (about); my doctor has already agreed to sign off on it (apparently, you need a physician's signature). I've been meditating on what Mike mentioned: it doesn't really matter WHAT the virus is; if you can get your immune system modulated, well, you have a chance...
  6. Koan

    Koan Be the change.

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    Joyscobby & Min,

    If the XMRV findings are confirmed, and given the rigors of Science that seems likely, the threat to the blood/organ supply, internationally, with take precendence over the opinions of the madmen who have been tormenting you.

    The interests of public health will supercede those of the psychiatric lobby. This is one of the very few things I can think of that could free you from the hell you have been subjected to but, this will free you.

    With you in spirit (but very relieved we left the UK when I was 5),

    Koan
  7. Quilp

    Quilp Senior Member

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    White and Wessely

    They will never admit they have been wrong. I share your enthusiasm Koan, but trust me, here in the UK some doctors don't even know what M.E is. Ironically that is the best you can hope for.

    I myself have seen the disdain in their eyes, pent up anger at people like me wasting their time. Professer Peter White said we are the 'least deserving sick in society'. This isn't just open hostility, but a current of hatred flowing freely right through the hearts of all our suffering.

    I am desperately hoping to have a virus that is related to aids ( how desperate do you need to be to feel that way ??? ).....just so that the illness can finally be treated one day, and just maybe, an apology; not from Wessely you understand, but from those close to me who turned their back when i needed them most.

    Kind regards, Mark
  8. Nina

    Nina Senior Member

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    Mark, I am so sorry to hear what you are going through. I always thought the situation here in Germany was horrific, but at least we don't have this kind of "negative lobby". I really wonder what it is that makes these people hate us so much.
  9. anne

    anne Guest

    I had CFS and my husband has it now. We have a two-year-old boy. I saw Dr. Peterson when I was pregnant and he mentioned (very kindly) the possibility of maternal/fetal transmission. And despite the fact that I knew there was could be contagious element involved (given the cluster cases) I didn't pay that much attention. And then my husband got ill. So we have been dreading the chance that our boy will get this. I trust these results, and I know what my XMRV test would reveal, as well as my husband's (and I imagine he'll get one when he sees Dr. p in a couple of weeks) but I don't know what my boy's will be. And when there is a reliable test I want him to get one. But there will be nothing we can do about it. It's the difference between suspecting there's a ticking bomb somewhere and knowing it. For us, well, we've already been sick, and the XMRV represents knowledge and hope. For our little boy, it's something else.
  10. Koan

    Koan Be the change.

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    I hear you Mark.

    I have been very interesting in what has been going on over there for a long time.

    I've seen the look you describe when I have floated ME/CFS with a new doctor I was considering seeing. But, here (Canada) in the land of politically correct speech, they are careful what they say.

    I think it is Political Correctness which has saved us from the "open hostility" that hate speech encourages. I think it has prevented eye-rolling from becoming abuse - the very attitude of the person who could become abusive is modified by insisting on PC speech. They must consider their words and cannot make merry with their disdain and whip it up into frothy hatred. I think this has been a very interesting experiment in political correctness.

    I've read that poisonous little fellow "Crippin" with his barbed, supposedly clever, blog.

    I truly do not know how any of you cope with it. This Irish Buddhist would "throw a paddy" to use an odious phrase still considered acceptable in some quarters - the same quarters where the ill can be abused, tortured and then mocked for sport.

    I hear you. It breaks my heart, it truly does. I know how good I have it, believe me, I know.

    In solidarity,
    Koan
  11. Martlet

    Martlet Senior Member

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    Nina, Where in Germany are you? Please pm me. We are hoping to return to Germany to live, once our home here sells, but I must admit to being nervous about what will happen to me medically.
  12. Koan

    Koan Be the change.

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    Dear Anne,
    Yours is such a sobering situation. It really brings home how each of us faces a unique set of circumstances. We can make no generalizations, at all, really.

    I truly hope that this research leads quickly to understanding regarding how to prevent infection from becoming illness.

    That may not be too far away.
    Koan
  13. jackie

    jackie Senior Member

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    Anne...your story breaks my heart.

    To watch your tiny son and wonder what his future will be like...is nearly incomprehensible.

    To think that others in control may have had the answers and ignored them for 25 yrs. must make you so angry.....and so sorrowful. Someone, down the line, will have to answer for this.

    I understand your situation and feel the pain you have, as I worry about my grown son and daughter and their children.

    When my son and DIL were pregnant with their first son 7 years ago...I searched for info on transmission...it seemed, from my research, that I was ok (but I was "quietly" careful around them).

    Then, when they were pregnant with their second two yrs ago....I asked my I.D. doc and was told (with a laugh) by his office that, of course, I was not infectious. So I reassured my family that there was no danger of transmission. I guaranteed this. But again I chose to be "cautious" - always making excuses for a lack of closer contact.

    I have 6 grandchildren and I've NEVER kissed the youngest two on the mouth. I sometimes wonder what they think of the grandma who hugs but doesn't kiss....the one who keeps the container of hand-sanitizer by the front door!

    We think of our grandmas as smelling like cinnamon and vanilla, or nice perfume - sweet flowers, or fresh baked cookies, maybe!

    I'm afraid I'LL be remembered for smelling like LYSOL!

    You and your little family have my sincerest sympathy.

    jackie:(
  14. Aftermath

    Aftermath Guest

    Guys in the UK: Hang In

    You guys in the UK need to hang in.

    If the causal link with XMRV is indeed proven and accepted in the US, it's going to be over for guys like Wessley and White. They are going to become symbols for ignorance and arrogance in medicine worldwide.

    People tell me that pickets have been organized before. Once you have fully accepted scientific proof on your side, the media reaction to these protests will put things over the top.

    These guys are going to have a hard time showing their faces in public ever again.
  15. Alice Band

    Alice Band PWME - ME by Ramsay

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    Thanks Aftermath,

    Things really are as bad in the UK as other posters have said.

    The pro-psychiatric lobby here has already started to plan to replicate the XMRV research and Barts is the hospital with patients that is planning to do this. They are an infamous CBT centre and use the Oxford criteria.

    We can only hope that other fair researchers also work on the research. This will take years though.

    What we really need is testing though as it will be that trickle, trickle effect from patients that will get things done.

    Once testing starts (and several labs are interested) we can then start to tackle our biased health service.

    It's been a real problems getting people to go to pickets. I have been to several plus the legal case recently. It really is hard to get people who are well enough to leave their homes and come to anything. Always the same people.
  16. Sing

    Sing Senior Member

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    Why some people have been so aggressive?

    Yay, Aftermath! I agree with you. And Koan, thank you so much for your humor along with all the understanding. I am rivited to this dialogue and unfolding "story" which isn't a story.

    Why do some people get so aggressive with us? I feel it is the same intolerance often shown towards any weakness, slowness, crippledness or dependency. I think of this intolerance as coming from the neurotic ego which needs constant reinforcement or feeding in order to keep its self esteem going. The reason we are labelled as psychiatric cases is PROJECTION; the people doing this labelling and scapegoating have the psychiatric problem.

    We are not alone in being projected upon like this. It is the history of racism, sexism, animal abuse, ethnic hatreds, etc. Think of the reality abuse that slaves in the US had to deal with and how it is miraculous that they and all of their descendants didn't implode with insanity! I do because I grew up in that world. People's ability to deny reality in favor of some myth which supports their importance and power is everywhere.

    That said, people's capacity and need for truth is everywhere also. We would not be so powerfully moved when we finally hear it, say it and act upon it if this were not true.

    I hope we can be courageous, truthful, and generous too with others who are working through towards an adjustment in their reality, as we move ahead with this historic change of course.

    Cecelia
  17. shrewsbury

    shrewsbury member

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    Hi Levi

    A poll is an interesting idea. Below is from the FAQs on this site. I can't read it all now, so don't know if it meets your privacy criteria.

    if:)


    How do I create a new poll?
    When you post a new thread, you may also have the option to create a poll.

    This allows you to ask a question and specify a number of possible responses. Other members will then be able to vote for the response they wish, and the results of the voting will be displayed in the thread.

    An example poll might be:

    What is your favorite color?

    Red
    Blue
    Yellow
    Green
    Sky-blue
    Pink with yellow spots
    To create a poll when you post a new thread, simply click the 'Yes, post a poll with this thread' checkbox at the bottom of the page, and set the number of possible responses you want to include.

    When you click the submit button, you will be taken to the poll creation page, where you can specify the question and the list of responses you want to include.

    You may also want to specify a time limit for the poll, so that (for example) it stays open for voting for only a week.

    How do I vote in a poll and view the results?

    To vote in a poll, simply select which option you want to vote for, and click the 'Vote!' button. Sometime you can choose more than one option. You can see the current results for a poll before you vote by clicking the 'View Results' link. Voting in a poll is entirely optional. You may vote for any of the available options, or cast no vote at all.

    Note whether or not a poll is a public poll. If it is, any votes you cast will be attributable to you.

    Generally, once you have voted in a poll, you will not be able to change your vote later, so place your vote carefully!
  18. Aftermath

    Aftermath Guest

    Dr. Mikovits is Smarter and Tougher

    Alice,

    Dr. Mikovits appears to be smarter and tougher than Wessley and White put together. If anyone thinks that they are going to attempt to "replicate" her work using patient cohorts that do not have this illness (e.g. tired or depressed), they are sorely mistaken. WPI is going to call these people out on it and not let it happen.

    I definitely understand the difficulty of finding people healthy enough to protest. Still, if and when the perfect opportunity comes (e.g. follow-up research validating the WPI work is successful), everyone in the UK should make one valiant effort to shame these people into hiding for good.
  19. shrewsbury

    shrewsbury member

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    jackie - doesn't LYSOL mean 'love you so our little-ones'? That lysol will smell as sweet as cinammon to them I'm sure.

    if:)
  20. citybug

    citybug Senior Member

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    For UK. Dr Kerr has a grant to work with WPI. He's probably testing the blood. It is very frustrating that he doesn't release results, but from last study I could guess by age and severity where I was. Maybe his tests will come out a high percentage.
    Also WPI said they are licensing the test. Maybe patients can get Biolab or Acumen, is there Viracor? interested. They probably aren't reading every word from WPI like we are. European labs are trying to duplicate so someone will pick it up.

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