1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

XMRV results

Discussion in 'XMRV Testing, Treatment and Transmission' started by Patient 2, Dec 1, 2009.

  1. What 'treatment' is there for XMRV though Mike?
    It's a new human infection according to Judy Mikovits.

    No drugs exist to treat this virus that are established/ proven in any scientific study against XMRV in humans with the diagnosis of ME/CFS or XAND. So there is no treatment, as no study has taken place, or been completed.

    Reporting one recovers from ME/CFS, without evidence of XMRV, means nothing. ME/CFS means nothing. It means no one knows why patients are sick - so the reason to have ME/CFS, can be anything. That includes me.

    I could claim to be on deaths door, recover and say I did this from anything from Psychology to Valtrex or finding my religion. It means nothing to recover unless I can show the reason I was ill, on a clinical basis. Maybe it was infection, deficiencies, allergies. Would that qualify for saying one recovers from ME/CFS - then sure. ME/CFS is anything.

    That 'aint a retrovirus though, and that's critical when discussing XMRV.
    Which is my point here, that XMRV is incurable as we don't know what it is, what it does. What we do know, is that is replicated in your DNA, and you become part of it, and it becomes part of you - literally. Historically, no retrovirus has ever been removed from the human body, only controlled with powerful medications dispensed by chemists.

    If we're debating XMRV here, we have to stick to XMRV infected people and not a diagnosis of ME/CFS, as that diagnosis requires no evidence of infection, or infection with a retrovirus.

    If XMRV is in your DNA, it's in there and a clinically validated test will pick it up. That may take another year or longer to perfect. Hence we need the VIPdx/WPI tests and need to get treated by Immunologists and qualified doctors who specialise in this area of health care.

    No one has ever recovered (eradicated the XMRV from their blood and organs) from proven XMRV infection found on this new assay. It's only come out at research level since October 2009.

    XMRV cells may well infect heart/brain and other organs in humans. Until autopsies are done no one knows.

    If I'm wrong and XMRV patients are being 'treated' with a new 'treatment' in a secret Area-51 drugs trial that Dr Judy and Dr Peterson are unaware of, that clinically proves that XMRV is eradicated from the blood, or lower levels are found (if so by what method are they measured?) - then fine, that's great news for patients.

    However, I'm yet to read one word of this on this excellent forum, and from people like Andrea Whittemore who's mother co-founded the only centre/clinic in the world for neuro immune disease - now associated with XMRV.

    I'd love to hear of clinical trials that have been done on people with XMRV - that are so effective, they may not now test positive for XMRV.

    That would be a scientific way to assess that someone may not test positive for XRMV when having the test - whilst being 'treated'.

    Thank you.
     
  2. nora_n

    nora_n

    Messages:
    19
    Likes:
    1
    europe
    cold, this is about a form of homeopathics called isopathics, german stuff, I think and yes, viruses and bacteriae can be treated that way. i followed some threads on a lyme forum about homeopathic and infrared treatments for borrelia. Joey has a whole blog about that. (his lyme is undetectable now as far as I know) Others have blogs about that treatment too. Mike's treatment is not that knind of treatment, it is another form of homeopathics than the infrared amplified kind.

    I also read that some people are rifing for xmrv virus.

    There are several discussions about such treatments on some forums, you probably have not read them. :)
     
  3. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Cold Taste of Tears

    Hey thanks for taking the time to make a lengthy post like that.

    Yea, maybe your right....than you probably shouldnt try the treatments we discuss on this excellent site.

    You have the freedom to wait for those treatments with "scientific evidence."

    I waited 14 years, still waiting.

    All the Best

    Mike
     
  4. caledonia

    caledonia

    Messages:
    3,039
    Likes:
    1,711
    Cincinnati, OH, USA
    Cold

    Mike started his treatment a year or more ago. Patient 1, 2, and 3 started theirs this summer. This was all before the XMRV stuff was published.

    So there was no way of knowing if they had XMRV or not when they began treatment. All they knew is they had a CFS/ME diagnosis and they were very ill for many years (like all of us.)

    I guess they are trying to do some catching up now that the test is available (like everyone else).
     
  5. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Caledonia

    Very good point, we had no clue of XMRV at the start of treatment, nor did anyone else, at least not publicly.

    We have been treated for Retrovirus through out the process though. As well as enterovirus and various mycoplasmas, bacteria and parasites.

    We like most ME/CFS patients have a cocktail of all sort of pathogens. :mad:

    Mike
     
  6. Aftermath

    Aftermath Guest

    Very Well Written

    CTOT,

    Very well written. I couldn't have said it better myself.

    After having thrown good money after bad in over 15 years of attempting to treat this illness and having gotten absolutely nowhere, I'm not pursuing further treatment until something has been scientifically validated.

    The vitamin peddlers have had 20 years to find a cure for this illness--one need look to this or any other Web based forum for a few minutes to learn that they have *not* been successful.

    This should not be taken as speaking ill of Mike or his doctor--just an observation that I personally need to see scientific proof of the efficacy of a treatment modality before I will attempt it.
     
  7. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Empirical vs anecdotal evidence of XMRV results - the sliding scale

    The need for transparency - and practicality
    CTOT, I completely agree that we have yet to see empirical validation of XMRV/ME/CFS causality - much less similar scientific evidence of treatment efficacy. And when I hear about a successful therapeutic intervention for ME/CFS, I first of all want transparency, so that I understand where on the sliding scale of evidence this intervention falls. So when I hear of spectacular single or multiple-case successes, I can intelligently assess whether it is scientifically reasonable to call this a cure or not.

    Why entertain alternatives?
    That said, beggars can't be choosers, and our patient community definitely falls within the former distinction. As Mike infers, if we limit ourselves only to treatments endorsed by clinical trials that have made it all the way to Phase III - IV, we might wait a long, long time. Which isn't always an option, and Mike's dire pre-treatment status is a vivid example of that.

    Scientific perfection vs Breakthrough Innovations
    I believe one of the single biggest impediments to effective treatment for ME/CFS has been the medical profession's terminal case of "groupthink", and aversion to out-of-the-box thinking. Look at Dr Zamboni and his radical way of looking at MS - iron accumulation in the brain resulting from blocked veins. Why the SAM HILL did it take so long for the medical community to see this? (and yes, like XMRV, the theory of Chronic Cerebrospinal Venous Insufficiency and its treatment still need to be scientifically validated). My observation is that medical guidelines can entrench best practices so rigidly that they fossilize and create the kind of intellectual rigidity that paralyzes the medical profession when they see a complex, multi-system case. No wonder it took an innovative outsider to shake things up with XMRV.

    The Rare Disorders Precedent: Orphan Drugs
    Also, in the arena of Rare Disorders (and one might argue that some of the subsets of ME/CFS might qualify), where patient sample size is extremely limited, one will NEVER have the numbers to be able to say, "Treatment A cures all cases". One might never get the 300-3000 patients needed, for example, for a Phase III clinical trial. Rare disorder organizations and clinicians recognize this, and weigh the treatment urgency and the patient's clinical status, with the risks of a given "orphan" therapy. And prescient governments enact Orphan Drug legislation (eg. the EU and the US have such legislation - Canada still does not), so that vital medications that have not passed full scientific muster, can be made available to desperately ill patients with no other therapeutic options. (Hence Ampligen received Orphan Drug status in the EU, and was available through a non-legislated Compassionate Program in Canada, even though the product hadn't passed full clinical trials.)

    So where are you on the evidence spectrum. How much do you need?
    I'm a nerd, and I like science. But I'm also a pragmatist, and for that reason, while I'm whispering incantations for XMRV to be "it", so that we have some understanding of why I haven't been able to fight off a common parvovirus infection. I'm also carefully reviewing as much of the alternative literature as possible to better understand my options to address this possible retrovirus XMRV, move out of the chronic illness shadows, and return to living life in great honking bites again. And yes, I'm on the VipDx XMRV diagnostics list. After all, this is year 11 for me, and counting.

    Eg. Low-dose Naltrexone as an Alternative Therapy - efficacy may never be "proven"
    Which is why I'm also on Low-dose Naltrexone (LDN) now. Yes, LDN has research studies, but not right through to Phase IV. That said, there appears to be a chorus of rheumatology, neurodegenerative patients - and HIV patients - who are benefiting from it. It's discussed on most association websites for organizations from Crohn's to ImmuneSupport to Arthritis to MS to AIDS. Abundant anecdotal evidence, partial scientific evidence. An added benefit is that high-dose naltrexone HAS had rigorous safety studies, and I've made the (probably reasonable) leap of faith that if it's not toxic over long-term use at a high dose, then it's probably OK at an ultra-low dose. But I do bristle a tad when some of the LDN websites pass LDN off as "proven" when it just isn't.

    And I remain mindful that LDN will likely NEVER get the full-blown clinical trials needed to definitively prove its efficacy. It's off patent, and there's not much business incentive now for a pharma to pay the $200 million or so it takes for a full series of clinical trials. In other words, I'd consider LDN "alternative" - and it may well always be in that realm. But for now, I'm "in".

    Balancing urgency vs risk
    Alternative therapeutics are often the only door for patients in dire circumstances. When you hear of a spectacular turnaround such as Mike's, I immediately think: Publish it, publish it, publish it! This may very well be one of those "out of the box" breakthrough innovations that could bring us back to health. And it might be the very first link in a chain from single-case study to multiple case study to... clinical trials. Or it might be a treatment that isn't patentable - so like LDN, in the absence of an angel investor, it may never achieve full scientific blessing - even if it merits it.

    A modicum of "Informed Consent"
    What I look for with alternative meds is some feeling of "informed consent". Is the patient fully informed of all the known risks - and also apprised of the uncertainty in the treatment? Or is it passed off as a scientifically-proven treatment, when it is not? I want to know the risks or uncertainty around alternative therapies, and successes defined as scientific or anecdotal. And I am concerned that many patients might not be able to discern the difference when anecdotal evidence is presented as proof. It's all in the presentation - and in my view, with transparency comes credibility. There is no shame in being an innovator.

    Risk associated with Alternative Medicine - a personal choice
    As for risk, I've already crossed the barrier of travelling to another country for a potentially risky procedure (in my case a heart biopsy in Germany to confirm a chronic viral infection related to my ME/CFS) that was considered "alternative" in North America, but is abundantly documented in European peer-reviewed research, and is standard in Germany for patients with "atypical angina" and viral heart disease. (And yes, I'll be posting more when I'm up to it). But I knew the risks going in, and frankly, didn't have a choice to ignore my virally-induced heart failure, as my Canadian docs did.

    Transparency and practicality: those are my two criteria for feeling comfortable on the spectrum from anecdotal to empirical evidence.

    As for what I look for in a forum on ME/CFS, it's a combination of: the quality and timeliness of information; openness to both ends of the alternative/empirical rigor spectrum; user-friendly organization; and a healthy tone, which for the most part this website truly embodies. An admin issue, and in the interests of clarity - might I suggest we split this thread into: 1) Alternative therapies for ME/CFS and XMRV; and 2) Discussion of XMRV Test Results?

    Let's keep it real.:cool:
     
  8. Patient 2

    Patient 2

    Messages:
    69
    Likes:
    0
    parvofighter

    I am very interesting in hearing about your experience with heart biopsy as I was seriously considering doing it in Germany as well. Please share when you get a chance!

    Thanks
     
  9. _Kim_

    _Kim_ Guest

    Hey parvofighter. Ditto to what Patient 2 wrote. I'm also interested in your heart story. I had years of atypical angina (Prinzmetal's or variant angina). It is now under control with high dosages of Magnesium. I have searched online to see if there has been any research into the angina/CFS connection and haven't found any thus far.

    When I would get the angina attacks, they would come on during a period of rest or very light activity. They would last between 5-15 minutes. I would have a stiffening, cramping pain that would arise from my lower sternum and creep up into the right side of my jaw.

    I've tested negative for Parvo B19 (no antibodies even), but have high antibodies for mycoplasma pneumonia, HHV-6, and EBV.
     
  10. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Parvofighter

    Good stuff....interesting to read, Thanks...Tell us more

    You are right also, I did not have time to wait for another treatment.
     
  11. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    Parvofighter-- Thank you. I need to print out your post (or memorize it) or something... because it does summarize so well the factors that one needs to keep in mind when considering a treatment or even a test, and to be clear and honest with oneself about where one is on the "evidence spectrum." Best to all, Jule
     
  12. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    CFS angina

    Hi, Kim; I too have atypical chest pains at times, sometimes in the central or lower sternum, sometimes across the lower ribs; I had heart surgery 5 years ago (aortic valve and one artery), and there does not seem to be any evidence for CAD blockages at this point.

    There is an interesting comment on Cheney's latest DVD that the diastolic dysfunction he finds typical of CFS can involve a thickening of the septum to the point where there is sufficient lack of perfusion to produce angina like symptoms, and this may be your case and mine, though since your pain radiates up to your jaw (classic heart attack symptom, I gather) you do have to be very careful--and I have no doubt that you are. Have you had a recent echocardiogram, and does it show evidence of diastolic dysfunction?

    But check that DVD--worth buying, I think, though not always super clear to a layperson.

    Best wishes, Chris
     
  13. CBS

    CBS Senior Member

    Messages:
    1,379
    Likes:
    312
    Western US
    Whittemore sample prevelance - Science and CFS

    Just a quick comment on the characteristics of the WPI XMRV study sample. I was at a presentation last night given by Lucinda Bateman, a very active CFS advocate with a great deal of knowledge both from her own CFS practice and interaction with the folks doing the latest XMRV research. The topic arose about the characteristics of the WPI sample and how it might relate to those she sees in her practice. To put things into perspective, she said that about 10% of the patients she sees in her practice would have CFS illness ('not chronic fatigue, small 'c' small 'f') as severe as those used in the original WPI study ("the sickest of the sick"). She did not want to minimize the difficulties faced by the other 90% of her patients, just to clarify that she felt that some portion of that 90% seemed different, in some meaningful way, than the 10% she felt was similar to those studied for XMRV so far.

    Another revealing comment was that she had been told by those involved in the submission process that 'Science' had originally insisted that that the WPI remove any and all references to CFS in the XMRV article. To their great credit, after several exchanges on the matter, the WPI stood firm!

    Way to go WPI, Cleveland and NCI, my heroes!
     
  14. Parismountain

    Parismountain Senior Member

    Messages:
    179
    Likes:
    79
    South Carolina
    Whittemore-Peterson patient set

    Saw Dr. Oz todayon tv and if we're worried that only the sickest of the sickest are in the original study, the lady interviewed was positive and (don't yell at me) she was at least mobile. I was thinking to myself I look about the same as that lady, no real great outward appearance of illness.

    I watched online the whole Wanda Jones secretary for woman's health thingy a month ago and in the public comments there were people submitting statements from their sick bed, unable to even form the words almost. Now that's to me currently the sickest of the sickest and the Oz lady who was in the study was in much better shape so the reason I post this touchy subject is I think a lot of moderate illness people are fearing we're not going to test positive (the 90% above post by the doc's estimate) but yet the Oz lady who was in the study didn't seem to fit the "only the sickest of the sickest" definition. In a strange way that's hopeful to me that the included patient set was inclusive of people who are sick but yet can do a small number of things.

    I usually wouldn't write something about an appearance of someone since we all know when you look fine it doesn't mean anything but I'm just not likeing that 90% expected not to have XMRV news.
     
  15. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey Parismountain,

    I got the impression, from what she said, that she was working - not in a position to not work was more what she seemed to say, but it wasn't clear - but she certainly was not one of the patients absolutely unable to function - yet, maybe - so the point you make about testing and functioning is a good one.
     
  16. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Ugh, now I'm worried that those of us who are bedbound and completely unable to function won't test positive because it's something else, like mitochondrial failure, that's causing us to be so weak!

    Waiting for my doctor to sign the form and send it to me...the waiting in general is killing me...
     
  17. CBS

    CBS Senior Member

    Messages:
    1,379
    Likes:
    312
    Western US
    All of us rally for important events but I know for myself that I have about 2-3 hours a week for getting out and if I do much beyond that I will pay dearly (as is the case with many others, I often pay dearly even when I don't get out). Also for myself, for years I was suffering but able to at least work part time if I was very careful. For the last 18 months I have been nearly housebound and for periods lasting weeks, bed bound. If I had to guess, I'd say that I'm approaching that 10% but it took years to get there. The 10% referred to by Dr. Bateman was not intended to suggest that only 10% will be found to have XMRV (If this pans out, I'm pretty sure that there a lot on the road to being in that group that will test positive), it was meant to describe the proportion of her patient base that she felt was similar in function to the WPI patients tested to date.
     
  18. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Before

    Before you spend $600 on a test from VIP/WPI I would send too Cooperative diagnostics in South Carolina, it's free for participating in the study.

    The heart issues are very common for ME/CFS patients, I had sharp pains for years. I would never lay on my left side as I always felt something was wrong.

    The doctors would always say it was the muscles around the heart but they were wrong.
     
  19. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    Are the test results

    people are currently starting to get back using all the testing techniques used in the WPI's 95% positive figure post Science publication?

    Or are they being tested using the techniques in the Science study which gave a 67% positive rate?
     
  20. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Good Point

    Kinda confusing?
     

See more popular forum discussions.

Share This Page