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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Sue C

    Sue C Sue C

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    My first reaction to this was tears....that no news is necessarily good news but at least it is new research done by and reviewed by accredited science and research people, I am a long time patient/person who, diagnosed in 1995 .....after two+ years of multiple doctors. Remember the book Osler's Web? So much of ME/CFS history there, but then researchers, as De Freitas et al, were treated with suspicion and their lab findings so costly to secure let alone prove. Then, my ideas fly to the initial Truckee outbreak which Drs' Peterson and Cheney saw in their practice. Many were either teachers or healthcare, or around many people in their jobs. In my years as a nurse, prior to disability, I was around patients fluids from chemo, chronic liver and organ failures, before DRGs (diagnostic related groups) as a method for reinbursement by mainly hospitals, patients were kept in hospitals for weeks at a time. Saliva is a body secretion, as mucous via suctioning lung cancer, etc, urine, feces...hepatitis from blood or these sources. My onset was gradual relapsing- remitting til crash. As a Cheney patient from DX til his heart surgery, went through the myriad of tests to know that I have mod/severe case...my RNase result was '7' which he said was probably since for years it was grinding my messenger RNA so that many longterm/chronic patients might not be in abnormal values now. No longer a clinic patient and probably would not concur with his recent approach as it is too experimental to be widely embraced....and costly. Whatever antivirals, if implemented, hopefully would be covered by, or elligible for assistance such as HIV drugs....a long road. CFS is a poor enough label for what we deal with but 'retroviral' group, though not as complex as HIV/AIDS, is not a label I would want to publicly embrace or be challenged by. But, it certainly gets CDC's attention!
    Whittmore-Peterson is a very good place IMHO, as stated, her daughter has been ill many years and Dr. Peterson has been involved since the initial outbreak was documented. They are personally committed to research. Although, I may not be in an antiviral test group category, at least it gives valid hope of better research for newer cases. Neuroendocrineimmune involvement is a large component to approach. Will try to shorten my reply in future, but this feels important. (gradual onset, now mod-severe) Sorry for my run on sentences, noted. Sue C.
  2. jackie

    jackie Senior Member

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    All here......I can't seem to leave this place either! Just when I think I'll stop reading - I DON'T!

    I'm in bed like I'm supposed to be, have the laptop on my chest so far up I've got a sore chin from having it slide forward and I'm STILL tired.

    Some things are actually worth "crashing" for, so if anything alse happens will somebody PLEASE let me know!

    Think it's time to COOL MY JETS and take a NAP! jackie
  3. kurt

    kurt Senior Member

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    so what now?

    Wow, this has been an amazing two days. Will be hard to wait the months/years for this to play out.

    Did anyone read the comment by a claimed Retrovirologist below the the NYT article that probably the only AIDS antiviral that will help with XMRV is the highly toxic drug AZT?

    Even if XMRV turns out to be a passenger virus or just the 'mob boss' and not the actual 'hit men' causing our suffering, I feel like the world has changed and will never be the same again. The public and politicians are justifiably frightened of retroviral epidemics, and WPI just handed them one. Bittersweet for us.
  4. Sue C

    Sue C Sue C

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    research discovery/Media/Articles

    Just posted on NPR as 'lilies'. Deja vu with some skeptics, as when CFS was previously in the limelight. Am encouraged by journal report accuracy, not word of mouth, but scientific research. I have lost much of my former English writing skills but am able to write short opinions to (ie) news shows,etc,
    Am a frequent viewer of PBS NYC13, Charlie Rose show. His guests have included some of the best researchers in human genetics, disease models and world medicine approaches to HIV/AIDS in 3rd world countries. His guests are often on the cutting edge of medical discoveries. It may be worthwhile to send his producers this recent news.
    Also, if physically able, I am to attend a conference here, (Oct.17?) in NJ (CFS). with guest speakers who practice medicine in NY Metro area. This topic should arise there. They have a website with this conference info at NJCFS.org .
    As others,am overstimulated and wearied of my laptop use for the day, Cheers! Sue C.
  5. Kati

    Kati Patient in training

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    Sarah, I didn't sleep too well last night, and am elated as well, and want to know- I have phoned to WPI for info about testing- I'd send them my blood today, but ..!!! And now I am exhausted. It's a day for celebrations and it happens to be our Thanksgiving week end here in Canada.



  6. Wayne

    Wayne Senior Member

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    Reeve's Comments

    Hi All,

    I'm at a rest area at the moment, and unable to peruse much of this information at the present time. It all feels really remarkable to me, and see nothing but good coming out of this. There's so many things to comment on, but I was perplexed by the following:

    """""Unfortunately, Reeves said, the major flaw of the study is that there is not enough information about how subjects were selected to rule out any bias in choosing them."""""

    I know I deal with a lot of cognitive dysfunction, etc., but why doesn't he just pick up his telephone and get a 2-minute synopsis on the selection of subjects? And why does he call it a "major flaw" when he doesn't know what criteria were used?

    I don't know anything about this man, (I probably should, I know), but his comments don't sound like he's ready to run with this new information, and perhaps start making up for lost time. I hope I'm wrong.

    I hope to get settled in the next week or so at my brother's in Arkansas, and expect to have better internet access at that time. Just wanted to take a moment and say, "Congratulations to all of us", and "thank you" to all the researchers who have helped bring us to this critical juncture.

    Wayne
  7. consuegra

    consuegra

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    Ampligen

    I am confused and vexed about Ampligen. The fellow running Hemispherx should be locked up.

    I have met a number of people that clearly benefited from this drug. Once they get off it, they revert to their ill state. I have asked them what they would do if Ampligen, by some miracle, gets approved. They all say they would take it again.

    Annette Whittemore's daughter took ampligen for some years before developing a reaction to it. It seems to help many people and is said to regulate the RnaseL pathway. XMRV messes with the RnaseL pathway (from what I understand).

    Connect the dots. The CDC has blundered terribly. The FDA is barely able to do their job. Ampligen is one of the few immediate options for countering this disease, especially as part of a cocktail. There is going to be widespread pressure for drugs and drug cocktail experimentation.

    If Hemispherx can avoid getting reprimanded by the SEC or FDA or both, I see Ampligen getting approval. I would give it a 100% chance.

    Where am I off here?

    Chris
  8. hvs

    hvs Senior Member

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    Heard Dr.P on NPR. He did a great job. Sent a little donation to WPI afterward.

    Thought, "good old Dr. Peterson worked himself out of a job: in a few years as this seeps through the medical community (and a drug cocktail gets established as the best) sick folks won't need to get to Tahoe anymore to see him--they'll just need to see their local infectious disease doc."

    Sweet.
  9. caledonia

    caledonia

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    Maybe that's where a co-factor or a trigger would come in. You have XMRV, but it doesn't make you sick until something else happens.
  10. Andrew

    Andrew Senior Member

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    I am getting sicker from sitting at the computer so much. I am going to have to force myself to stay away. And after that, force myself to not try to catch up. I just don't have enough health to do all this. :(
  11. Finch

    Finch Down With the Sickness

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    Me too!

    Add me to the crashing list, Koan! I stayed up reading way too late last night and awoke too early this morning. When something like this happens, we just want to connect with everyone else who understands and get any little bits of information we can. Also, knowing this is sprouting into the mainstream is more than interesting!

    Sarah, I think I know what you mean about wanting to tell everyone about this but not wanting to at the same time. My reason is that I want someone to tell me about it so that I know the message is getting across to people. I've told a total of two people - my husband, and a co-worker who was showing interest in my health and treatment today. I don't know how much longer I'll be able to keep it contained, but I'm really wanting to hear it from the "outside."

    Hi Wayne - glad you could drop in!
  12. Koan

    Koan Be the change.

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    I can't shake the image of trees falling over, one after another CRASH, CRASH, C..R...A...S.....H!

    But, I'm imagining us as trees! Big strong trees! Imagine that?!

    :p
  13. Koan

    Koan Be the change.

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    One more thing

    I have been really grateful to this community for being here to share this experience. It would be a very lonely experience for me without all of you.

    I am grateful for your intelligence, your engagement, your good questions and concerns and your willingness to share all of this.

    Thank you!

    Koan
  14. InvertedTree

    InvertedTree Senior Member

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    Koan-

    I completely agree with you. Thanks for posting this.

    Oh, and add me to the crash list.
  15. kitonthemoon

    kitonthemoon

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    Thank you, Cort.

    Wow.......I don't know about anyone here, I'm excited about this news and want to read all I can, every post, every comment, every information.

    Darn!!! Only if my zoggy brain would try and cooperate, just a little bit.

    I just want to say 'thank you' first, Cort, from the bottom of my heart for always keep all of us on top of reserach news, etc.

    God bless you.

    Jazzie 'kit'
  16. Mark K

    Mark K

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    this is what one guy said on his website, it makes sense:
    "It says that XMRV DNA is found in 67% of CFS patients, but only found in 3.7% of healthy people.

    Whether this XMRV actually contributes the the symptoms and pathogenesis of CFS remains to be seen. XMRV may just be an innocent bystander. In other words, if you have CFS virus like coxsackievirus B or HHV-6A, which themselves can weaken you immunity, it means that other infections, such as XMRV, can arise more easily.

    Alternatively, XMRV may work in tandem with a virus like coxsackievirus B or HHV-6A, and it is the combination of the two that triggers CFS.

    In the case of HIV/AIDS, a similar thing is believed to happen: if you have HIV and HHV-6A, it is thought that the progression to AIDS is much faster, because the two viruses together help each other.

    The very good news about this XMRV discovery is that there will now be a frenzy research into XMRV and CFS. Even the CDC (who to date officially deny that CFS is a physical disease), are already trying to replicate these findings. If they do find the same thing, this may begin to make them officially change their minds about CFS, and humbly admit that CFS is a real disease. It takes an act of courage to admit that your are wrong, so let us hope that the CDC has this in them.

    And of course, if XMRV is contributing to CFS, then it should be possible to find antiviral drugs that target XMRV. Perhaps even existing anti-retoerviral drugs may help."
  17. Hello to everyone. I am new here. Haven't even filled out my profile. But I have suffered acutely with CFIDS for the last 18 years. I am 58 years old, born in 1950, and have been ill with some intermittent and vague 'tires easily syndrome' since I was born. My opinion is that it was viral, an immune dysfunction, perhaps an acquired mitochondrial anomaly. I muddled through my life, alternately doing exceptional work but then failing to even show up. And then something catastrophic/acute happened to me in 1993. I have been disabled and housebound ever since. Patricia Salvato dx'd me with CFIDS. The nightmare was on...I lost everything in an instant. I lost my family.

    Yesterday, I saw the breaking news from the CAA and in 'Science', then watched it go viral over the social networking apps. I was in suspended animation. Then this morning I checked Cort's Phoenix Rising for a blog, and there it was: 'Game Changer' !!!. I checked out all the major news outlets, BBC, NY Times, ABC, Reuters, NPR...everyone was carrying the story. I got so excited that I collected and emailed the stories to everyone I know ( Heaven help them when they open their emails...lol ).

    I have been wired about this all day long and now into the night. I was finally catapulted to join this forum because I wanted to be with people who also suffer CFIDS, people who appreciate what CFIDS means in all its various aspects, immediately and potentially. People who are literally dying to hope...

    I was pleased to see someone posted Hillary Johnson's remarks: http://oslersweb.com/blog.htm?post=638469

    Validation is a good thing. I have no illusion that I myself will live to be 'cured'. I would like to dream that dream. I would like to dare to hope. It's been a long painful and lonely 18 years.

    Validation is more than I had ever dared hope for. I guess, in order to live, I had given up to a degree. So, this is ... good news, this XMRV factor. It will force someone's hand.

    Thankyou all who shared here, today.

    Thankyou, Cort.

    ~ smiles...bluebird
  18. Jody

    Jody Senior Member

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    Hi bluebird,

    Welcome to the forums,

    My heart goes out to you over all the loss you've suffered.

    I hope you will find help and some comfort here. At the very least we can ease a bit of the isolation. It has worked for me to a great extent. And this is an interesting time to come onboard. Lots of news and speculation doin' right now.

    And, I couldn't agree more. Cort is amazing. This place wouldn't exist without him.
  19. Kati

    Kati Patient in training

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    Welcome Bluebird, you are not alone, there is thousands of us here!
  20. jenbooks

    jenbooks Guest

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    It's interesting people say they crashed from overstimulation. I felt extremely upset myself. I think it has to do with

    1) Lyme is still up in the air so therefore so am I. I kind of want chronic lyme to involve this retrovirus and kind of not. If it doesn't then lyme is still lost in nowheresville requiring tons of out of pocket money for tons of toxic antibiotics that may or may not work...but if it does, it's kind of scary

    2) Everybody's joy is in direct contrast to their years of sorrow, and I could feel both from everybody. It is very poignant.

    3) What WPI did is purely good and courageous--as opposed to all the small-minded evil we've dealt with

    4) I'd *really* like to know why we had 3 epidemics at the same time and two were viruses that supposedly jumped species. Is that mathematically likely? First HIV (jumped from monkeys--Simian--SIV), now we find out a murine retrovirus (CFIDS) and then, though lyme has been around, a virulent form of tickborne illness that has crashed endless lives. They all occurred right around the same time. WPI says this mouse virus is not a lab escape as its consistent genetically no matter where they found it. I probably would like to do a bit more research on that, but I find it hard to believe the CDC's malfeasance is just ignorance enshrined. Why couldn't these pathogens have been introduced into the population by such means as for instance vaccines? Even if just sloppiness that was then covered up. Am I to believe that Baxter, who was caught last year with live bird flu virus in their flue vaccine shipped to various parts of Europe (which happened to be tested by one country on ferrets ahead of time and discovered the 'contamination')--am I to believe they never did that before? Why was this hushed up? The news was published in Europe and Canada, not even mentioned here.

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