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Lapp Reports XMRV is Found in CFS Using Genome Detection Technology/Ampligen News

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Mar 22, 2011.

  1. Esther12

    Esther12 Senior Member

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    They're mentioned here:

    http://www.genomeweb.com/sequencing...s-chronix-biomedical-caris-life-sciences-babr

    "Chronix Biomedical said that it has launched a new disease detection and monitoring service for cancer researchers using its Apoptotic DNA Blood Test, which analyzes apoptotic DNA from dead and dying cells to identify and track ongoing changes associated with specific cancers and other chronic diseases. "

    Not really able to see much about them though.

    edit: Bad googling. Actually, there are a few things about that make them look credible. I was worried they were just a lab out to scam people, but it doesn't look like that's the case.

    Stuff like this looks promising:

    Study validates Chronix Biomedical’s serum DNA blood tests for early, accurate detection of breast cancer

    http://www.news-medical.net/news/20...arly-accurate-detection-of-breast-cancer.aspx
  2. lansbergen

    lansbergen Senior Member

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  3. xchocoholic

    xchocoholic Senior Member

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    I'm way over my head here but are these related ? Don't all of us have insane allergic reactions to foods, chemicals, etc ... x

    http://ec2-174-129-232-51.compute-1...-contribute-autism-theoharis-theoharides-md-p



    Mast cells ...

    http://www.ncbi.nlm.nih.gov/pubmed/9354811

  4. SOC

    SOC Moderator and Senior Member

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    Whadda ya know... my lunulas have disappeared too. How strange. I never noticed that before. So is this another oddity of ME/CFS?
  5. justy

    justy Senior Member

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    Thanks for bringing this up Rich, i was wondering about the link too. I had the testing with the Acumen lab also and like Garcia i had a pretty high cell free DNA. Its a useful test in that it mirrors somewhat how you are feeling, so the test validates your illness, but i couldnt find out much more info about what its really telling you than that.
    My reading of the in the near future means that the very quick testing for $100 is not yet available or may not be for some time, i think its normal to say something will be developed without being 100% sure how or when.
    I am so excited by the news, just when i was beginning to think it was all a dead end.
  6. Boule de feu

    Boule de feu Senior Member

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    Is it possible to get a cell-free DNA without going through my doctor?
    And how useful is this test? What does it show?
    Where do I go to get one done?
  7. WillowJ

    WillowJ Senior Member

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    Ok, that bit about testing blood for dead cells and the pathogens in them is really cool. Cellular disease is really developing as a field. I wished I could be well and be a part of that revolution, but I certainly don't want it to wait for me. There are a lot of cellular diseases in addition to ours, that can really benefit from this sort of technology. Wow. Imaginary happy dance here!

    I had seen the Lapp newsletter and I'm pleased that Ampligen is deemed approvable. :) I also wish they'd hurry up about it. Both HEB and FDA.
  8. WillowJ

    WillowJ Senior Member

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    very interesting (as your posts always are), thanks much
  9. Bob

    Bob

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    Maybe i'm missing something here, but i can't quite understand what there is to get excited about here... Is there something I'm missing?

    As I understand it, Ampligen has a long history of not getting FDA approval, and this CFS study is one among many trials that they've carried out, and all the others have not met FDA approval. The FDA approval scheme is so complex and expensive, that I'm not sure this is something that is ever going to happen.
    The side effect that they mention worries me... "Flu-like" symptoms... Well, that's something I'm trying to get rid of, so I'm not very encouraged by that, especially because I tend to get a strong reaction to drugs.
    The other thing is that only a third of patients are responding 'very significantly', which means that two thirds might not be seeing any significant effects. Even the term 'very significant' doesn't mean much unless they clarify exactly what they mean. 'Very significant' might just mean that patients see a very small improvement. A 'very significant improvement' does not necessarily equate to a 'very effective' treatment. It might just mean a slightly effective treatment, or a minimally effective treatment. (I learnt all this about the use of wording in medical trials, from the PACE Trial, which talked about 'moderately effective treatments', which when analysed, actually meant 'very minimally effective.')

    And then there's the blood tests that they are talking about... It's all so vague, that i'm not sure exactly what they are offering us... And are they offering it to us now, or some vague time in the future? Are they going to publish their results? Unfortunately a patent request does not mean that they are going to have any actual results for us in the near future... It might be a speculative patent request.

    If they really have found an XMRV-Human DNA 'chimera', then that is obviously really big news, but it does seem to be somewhat speculative, with no hard evidence at this stage.

    If anyone can give any clarity to any of this, then I'd be grateful.
  10. WillowJ

    WillowJ Senior Member

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    Ampligen is not going to help everyone, but there is a potential to significantly (by any fair definition of the word, no studyspeak) help some patients. Some patients get a portion of their life back, get out of wheelchairs, etc. Not everyone is helped. Some people do worse, actually. It is still not a magic bullet.

    The blood tests are cool because generally you have to have identifiable organ damage, demyelination, or something like that in order for a doctor to notice you are sick. But some disease happen inside the cells. I refer to this as cellular disease.

    Doctors know about a few of these cellular diseases, such as some channelopathies like Myasthenia Gravis. However, they generally only test you for this if you have a visible sign like droopy eyelid (even though it is a known fact that you can have MG without that). They are supposed to also test you if you go into respiratory distress, but if they arbitrarily decide that the respiratory distress is some kind of anxiety or panic attack (perhaps due to a handy psychosomatic label like CFS), they might not even note this in your chart, much less test you for serious disease like MG.

    With a blood test for dysfunctional dead cells like this, they can potentially identify cellular disease--like ours: long on cellular dysfunctions like channelopathy, inappropriate apoptosis, cellular transport issues, probably cell communication issues, and the like, but short on what doctors easily identify as disease like shriveled organs, tar in the lungs, scar tissue building up, and other macro issues.

    Sounds to me like one could immediately prove inappropriate cell death was ocurring, and labs would perhaps have a novel tool for identifying specific disease processes or at least genetic differences (point mutations, foreign material such as viruses, bacteria, fungus) in the dead cells.
  11. Dan_USAAZ

    Dan_USAAZ

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    Bob,
    While I hope Ampligen works out for some, I think I am less excited about the Ampligen announcement and more excited about their claim that they can detect XMRX chimeras that are spilled into the blood as a result of cell apoptosis. If I am interpreting this correctly, it suggests that they can show XMRV integrated into human DNA and answers the question as to whether XMRV truly exists in the human population or if it was just a lab contaminant.

    If they can prove the XMRV DNA integration within chimeras and others can replicate the findings, I would assume that the science would be able to move forward and start looking at whether XMRV is a pathogen that causes disease. I know many researchers have already moved ahead, but I am referring to the holdouts who still claim that XMRX is a lab contaminant.

    I assumed most of the excitement in this thread was related more to the chimeras and less about Ampligen, but maybe not, I would like to hear from others on this. Also, if I am misinterpreting the implications of XMRV integrated into chimeras, please let me know that as well.

    Thanks,
    Dan
  12. Guido den Broeder

    Guido den Broeder *****

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    What Ampligen does is point the immune system in the right direction. This may not be enough; some patients may need strong antivirals of the kind that Lerner prescribes (valacyclovir, valgancyclovir). It is also entirely possible that not all the patients in the Ampligen trials really had/have ME. Remember that CFS is nothing more that a way to select patients for trials, it is not the disease itself.

    Apoptosis in ME has been known for decades, and is believed to be the result of defects in the immune system. Normally, a sick cell will first try and repair itself and will only end its life cycle when that fails. There are reports of finding lots of dead cell material in tissue samples of ME patients.
  13. eric_s

    eric_s Senior Member

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    Mine are gone too, except for both thumbs, there they are normal. I never thought much about it, even though i've realized i don't have them anymore. Interesting...
  14. anne_likes_red

    anne_likes_red Senior Member

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    Mine went years ago....just a hint of them left on my thumbs too. I wonder why the thumbs are special? :)
  15. SOC

    SOC Moderator and Senior Member

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    Same here, gone except for on thumbs. What on earth can this have to do with cell apoptosis or anything else related to ME/CFS?

    So many oddities with this illness.
  16. kday

    kday Senior Member

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    I noticed this before any treatment. Mine were completely gone on every nail. Mentioned this many times.

    Methylation treatment makes them grow much larger on the thumbs, and in my case, if I get my methylation cycle to go continuously, they appear on my index and middle fingers as well.

    I notice as they grow, it usually correlates with improvements in the nervous system. Shrinkage doesn't ever seem to be a good sign.
  17. SpecialK82

    SpecialK82 Senior Member

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    Yep, no lunulas here either except for the thumbs.

    Another sign of cell apoptosis is a disappereance of fingerprints. Dr. Lapp has noted that many of his patients no longer have their fingerprints. If you look at your fingertips, they are either pruned up (like when you just get out of water) or they are shiny looking and smooth. My fingers vary between the two. I've also noticed the soles of my feet are doing the same thing - smoothing out, they are more slippery when walking in bare feet.
  18. Dorothy

    Dorothy

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    I just checked my fingernails and I'm missing lunulas too - I only have them on my thumbs and one finger on my right hand. This is very interesting! My fingerprints had mostly disappeared by 1989, especially on the smaller fingers, and they've been like that ever since.


    I hope Chronix isn't being overly optimistic about their test becoming available "soon". Hemispherx does have a problem with overstating things. But if Dr. Lapp is excited, that's a good sign - it's like when Dr. Bell's socks "start rolling up and down".
  19. ixchelkali

    ixchelkali Senior Member

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    :D:D:D
  20. insearchof

    insearchof Senior Member

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    Hi Bob

    Agree with your concerns and the article detailing the history of the drug someone posted earlier was very interesting.

    I think though, Willow also makes valid points with respect to this treatment. Like most of what is being mooted and or offered, the long term efficacy of these treatments remains unknown. What you raise is important, and necessary to know and understand in order to do a risk/benefits analysis and go with what we feel most comfortable with (which is never easy when you're as chronically and sometimes critically ill and are concerned that something might lead to a further deterioration in your health). It is, a burdensome undertaking for many of us, severely ill, and already shouldering far too much of this burden alone.

    What saddens me, is that patients and researchers remain at this juncture 25 yrs (CFS) or 50 yr ( ME) on. If these illnesses had not been manipulated, reclassified or reassigned to areas of medicine where they were left to languish, we might not have to seek out cutting edge treatments, and struggle to weigh up the unpalatable acceptance of unnecessary risk, in the mere hope of some improvement in health and quality of life.:(

    On a more positive note I would like to learn more about this:

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