The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Dr. Marshall on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 17, 2009.

  1. Sheesh!

    Sheesh! Guest

    Exhausted... time to retire for a while.

    Time to get back to taking care of my health so I can recover.

    Thank you for engaging me in conversation.
  2. Katie

    Katie Guest

    See, this is why I was interested in your opinion. Whilst there may well be many retroviruses that effect animals and not humans, it is the 67% versus 4% of controls that sparks fascination that this is not particular to animals or harmless to humans. It being found in autism patients too is also interesting. This retrovirus does harm humans, it damages the immune system and burns out your NK cell count just to name one. Whilst there is still much to learn we already have some quite compelling evidence of XMRV's behaviour in humans.

    It's going to be an interesting year to see how this plays out.
  3. Sheesh!

    Sheesh! Guest

    Yes, I had heard about the NK issue. However, this does not mean that Marshall is necessarily wrong about a healthy immune system being able to handle it. It may be that it does what it does when introduced into an environment that cannot fight it.

    I'm open to his being wrong. It will be an interesting year. Regardless getting down and keeping down our bacterial loads will probably remain an issue. How we go about it may differ as the research progresses.
  4. Katie

    Katie Guest

    Doubley interesting (of course, don't feel obligated to reply if you're reaching burnout, my brain just happens to be in a good mood) this is a chicken and egg situation. My theory is that I was born with XMRV, my immune system had it under control but barely so which is why I had always had bad reactions to vaccinations and had them stopped for a while. Then my immune system was overwhelmed with a combination of puberty, rubella and mono-like flu (Glandular fever in the UK). It 'tipped the balance' as Dr Judy Mikovits said in the first interview I ever watched with her.

    What's also interesting is that it might be the case that when the balance tips, more than one disease can come about depending on the person. Autism, ME/CFS, childhood alzheimers, prostate cancer maybe?

    As you can tell, XMRV makes a lot of sense for me but I'm not completely there yet.
  5. Sheesh!

    Sheesh! Guest

    The missing part of the equation?

    I think, perhaps, that retroviruses and viruses like EBV and Lyme bacteria, down regulate the immune system (through various processes unique to the virus), making us more susceptible to bacteria that cause chronic illness. Even with AIDS, it is the bacterial illnesses that tend to kill.

    What if the body's response to a virus was to turn on the immune system, which then kills bacteria causing much of the symptoms, which could be clustered enough to make the virus identifiable because of the way the virus affects the bodies operation? (That is, perhaps some viruses have affinity for immune cells in specific areas of the body the way some bacteria do. RA and Chron's for instance.) In other words, perhaps in killing off the virus, the immune system also kills off bacteria in areas affected by the virus. It may be that some healthy people have no response to a virus because they have little to no bacteria in the areas attacked by the particular virus and so when the immune system kills off the virus in a very healthy person, the person is unaware of having it--that is, has little to no symptoms.

    Many people also believe that people pick up an inordinate amount of bacteria in vaccinations, and when a weakened immune system tries to respond to the threat, it is no match for the new bacteria.

    As one of the people with CFS who has had few viruses (or the evidence we are familiar with: symptoms), I suspect that my compromised immune system had difficulty rising to the challenge made by the virus--it was having trouble rising to the challenge raised by the bacteria as well. As a result, I had a similar reaction--outwardly that is--to viruses as those who might be really healthy: no bacterial die off, no symptoms. But I imagine I have been really good at collecting viruses if what I read is true (note the study that showed 30 to 50 active viruses in folk with CFS while normals have 3 or 4). And that doesn't even begin to explain what an active virus means in relation to our pea soup.

    I'm just thinking out loud here and recognize that I could be way off base:rolleyes:, and that viruses themselves may actually cause symptoms. It is something to ponder.

    I think it is likely you were born with both viruses and age old bacteria passed down from the beginning.

    This may not be an either or situation. It be a "yes and" situation.:)

    P.S. I took a food and water break.:)
  6. dannybex

    dannybex Senior Member

    Thanks Sheesh...

    Thanks Sheesh for your replies. Yes, we'll have to agree to disagree on most issues, but nice we can find some agreement in other areas.

    Oerganix -- I hope you'll read this in the same vein as Sheesh has, and not take my disagreements as being 'hostile' towards you, as that is not my intention at all. I'm glad to hear you had some improvement. I just completely and totally disagree with several things you said, particularly these three statements:

    "Nobody in America is vitamin D deficient."

    Now please, even Dr. Marshall wouldn't agree with that blanket statement. It's not even remotely factual. And even if it were, I would guess...just a guess...that because you're closer to the equator than I am, you're getting a massive overdose every time you go outside. Here it gets dark at 4:20pm in the afternoon.

    "I absolutely agree that Vitamin D is the current big money making "discovery" of the supplement industry and most, maybe all, of the "research" claiming it's wonders is paid for by that industry and is mostly bogus."

    I'd appreciate any documentation you could provide to back up your assertions in that statement. Seriously. There are dozens of studies you could check to see who paid for them in just the one message I posted on the previous page. And if you felt the "emphasis on sunlight was overdone", you must not be aware that 15-20 minutes of sunlight provides many thousands of IU's of vitamin D, 10-20 times the RDA.

    And finally:

    "The contention that the MP has caused harm is also unsupported."

    Sorry, perhaps you're new to the MP, and never saw or read of the people who were indeed harmed, but that's again the statement that the harm is 'unsupported' is just not factually true, and is supported by kidney function improving/returning after stopping the MP meds, aldosterone levels that were drastically lowered returning to better levels, and most importantly, most, but not all, patients recovering to some extent (and a few even recovering completely) after stopping the MP, and in many cases, adding vitamin d to their protocol.

    Best regards,

  7. SDD1244

    SDD1244 Guest

    I find Marshall's thoughts on vitamin D dysregulation (due to intracellular bacteria) very interesting. It is weird to see all of the MP members post their vitamin D results online. We all have a low (or low normal) vitamin D and a much higher vitamin D 1,25 hydroxy result.

    As far as Dr. Marshall's theory about going without vitamin D while on the protocol... I have some concerns about that. I think the only reason why is because I've seen other people make progress on antibiotic protocols, without avoiding vitamin D. My specialist was also unsure about Marshall's suggestions to avoid vitamin D completely. I can tell you that I know for a fact that my body does not want vitamin D3.. not only am I hiding from the sun, but I've also had muscle testing done for the vitamin and my body does not want it. Of course Dr. Paul Cheney has also come to the same conclusion recently about vitamin D3... didn't he say that it was toxic for CFS patients ?
  8. Sheesh!

    Sheesh! Guest

    Dan, there are possible explanations for all of the things you've packed together in that paragraph, and before I address them, I understand how having to address a multitude of charges can make one believe that the person addressing them protests to much or is onto something that does not make sense. In comparison, my ex-boss used to see business opportunities where those of us who worked with him would see many obstacles, and sometimes the number of obstacles is a good indicator that the opportunity is not a good investment (particularly when you consider the impact on your current organization). Sometimes, however, it is. As the owner of his business, that was his decision to make (to risk the gains and the losses). As the person who is responsible for my health and well being, these are decisions for me to make. I don't say this because I think you are trying to tell me not to make this decision, but to highlight that different people are influenced and convinced by different data.

    First, yes, some people have died. As was mentioned earlier by someone on this thread, some people die no matter the drugs they are taking because they are very sick. People with CFS untreated die, I believe, 25 years earlier on average (at least that is one thing I heard or read recently... can't remember if it was a CFSAC video or not). On the MP, one incredibly sick person's lungs could not handle it when that person's immune system came roaring back on--if I remember correctly, this person had only been given a few months at most to live prior to starting the MP. Also, I know of only two people who were removed from olmesartan while their kidneys were at risk--that is, ER personnel removed the drug that was protecting their kidneys from damage. From the research I read, doctors are often 15 to 20 years behind on the research; I would hope that emergency room staff would be more up to date and familiar with the research that olmesartan protects poorly functioning kidneys from damage. Perhaps these people would have died had they continued taking the olmesartan; however, I have never heard of anyone dying from kidney failure while on olmesartan despite their high kidney labs.

    Second, labs get out of whack on the MP as a result of immunopathology. We are warned to expect higher kidney levels and anemia, etc. I never had anemia prior to the MP and have had it since nearly the beginning years ago. It cleared over three months ago. My BUN has returned to the normal range. I am still waiting for my creatinine to return to normal. When I took a break from the MP, my kidney labs returned to normal as well; however, taking that break was really risky as I could have damaged my kidneys because I ought not have taken a break while my labs were high. (Life circumstances required a break however.) However, prior to the MP, my kidney labs were just below abnormal, which were high for my age and yet doctors said I had no kidney problems despite the years of kidney symptoms. My doctor when he saw the high labs in response to the protocol said, "Well, obviously we have been wrong. I see this as a sign that your kidneys are indeed infected." If my immune system was not working prior to the MP, then infection had been allowed to progress unheeded and nearly unrecognized by lab results (though I was getting there according to my labs just before the MP).

    So labs returning to normal after stopping the MP in the middle only means that the person is not killing off L forms at a fast pace.

    At any rate, I hope this makes clear as to why the MP is such a commitment, and why people who cannot make the commitment ought not begin it to being with. Most of us try to stress this to people who are interested in the MP. You can't just start and stop the MP without taking a risk of damage to your organs or having your immune system turned on so much without the olmesartan that you won't be able to stand the immunopathology (at least for a while, until the immune system goes back to not functioning as well). If you start, you ought to be prepared to see it all the way through until you are no longer having any symptoms while on the MP meds.

    I understand that all of this is counter intuitive. And that you and others may disagree with it; however, for me, knowing that fevers and other symptoms are a sign of a working immune system, this protocol makes a lot of sense.

    Third, anyone who has not fully recovered while on the MP meds will more likely than not feel better when they stop the MP. So I will repeat: It is a feel worse to get better protocol, and if a person gets to stage 5--the stage where their immune system becomes fully functioning again--without having killed off a substantial amount of bacteria, then they can feel much, much worse. The abx will no longer palliate, which is one of the things it does for some; it can only provoke, and so the person must grin and bear this stage with olmesartan alone. Anyone anywhere along the line is likely to think, "OMG! The MP is making me worse!" I have no doubt the person is feeling much, much worse. Like I said, my first two years were a very wild ride, and I may have more in store for me. Anyone who truly understands how the MP operates will understand this.

    If a person recovers completely, it is probably due to the fact that the person's immune system is now working properly. However, if someone has stopped while still having any immunopathology on the MP drugs, it is likely that they just feel better... for now.

    You may be familiar with quorum sensing--that is, the idea that bacteria do not do their dirty business in terms of symptoms until there are sufficient numbers of them in one's body. (Search this topic online: for example, and From all that I've studied, here is what I make of chronic illness and immune recovery. One might have already reached the tipping point into chronic illness without having symptoms (or at least symptoms that would get a rise out of their doctor or even themselves)--meaning, unless something happens to turn things around, the person may have already lost the battle. If that is true, then so may be the obverse: A person may feel well, but if their immune system has not reached the tipping point where it has control, the person will deteriorate. (Probably slowly, as most bacteria are slow growing.)

    And to get back to an issue raised earlier--has anyone finished the protocol?--, quorum sensing is also one of the reasons why some continue olmesartan for a while after they are no longer able to provoke an immune response with abx. (How long no one knows, but people do report feeling better and better, that their health exceeds anything they remember.) Some of us believe that it might be a good idea to continue of olmesartan to insure that we've reached the tipping point in immune health and not just a sense of wellness. I plan to do this. I also recognize that I might have a virus--retro or otherwise--that might make killing off bacteria more difficult and so olmesartan and a yearly abx cleanup might be in order for the remainder of my life, giving me the opportunity to wear out rather than die from bacteria related chronic illness. And I still hold out that something different may need to happen to restore my health fully.

    In summation, I would feel a lot better if I stopped the protocol tomorrow (that is, once my creatinine level clears). However, because I am not well on the MP drugs (have not reached a point where olmesartan combined with abx do not illicit an immune response), I would begin to deteriorate over time. How well I've gotten would probably determine how long it would take me to deteriorate, not taking into account additional exposures and the like.
  9. Sheesh!

    Sheesh! Guest

    Of course, you know we are not avoiding it completely. Vit D is in many of the foods we eat. While the suggested diet says to avoid egg yolks, there's not that much difference in the amount of D in an egg yolk as is in a serving of pork and yet pork is not prohibited (just meats high in fat)--though, I suspect from my own experience years ago that the D in egg yolks is more accessible to the body because of the nature of eggs and egg digestion. (By the way, people might want to look at the connection between egg consumption and diabetes.)

    So people are getting D in their foods. And some folk do not notice difficulty with diet and continue eating a normal diet while recovering. Other people like me noticed that once they were on the protocol something as simple as mayonnaise made them sick--like you, our bodies were very sensitive to receiving additional D. (We just couldn't see, perhaps, prior to the MP that consuming it made us feel ill--that is, it was no longer palliating symptoms for us; it was causing immune dysregulation symptoms instead.) Now, though I have a long way to go, I can have a bit of mayonnaise here and there with no difficulty.
  10. Sheesh!

    Sheesh! Guest

    Sometimes I wonder

    While I understand that people, given their own research and understanding of that research, reach a different conclusion about the Marshall Protocol (and perhaps the science behind it), and while I understand, that having a definite negative conclusion might cause one to want to protect others from the MP--might result in some people going so far as to call Marshall a charlatan or to suspect that those on the MP are misinformed sheep:)--, I don't understand in general the vehement reactions I often see on chronic illness support sites.

    You would think that those of us who are chronically ill and on the MP don't want the same thing as everyone else--that is, possible curative versus simply palliative treatment (though no doubt many might settle for disease management), informed care from our doctors, acceptance of our illness, etc., including sharing with people what we've learned and experienced. (Yes, including sharing with people what we have learned and experienced.) You would think that we are playing on an opposing team of long rivalry given how strongly people react.

    What I sometimes wonder is whether, for some people, their intense reaction has more to do with their anger at the idea that recovery of health (as it stands now) might be more painful for many of us than our current illness state. I mean, many of us spent years being sick and getting sicker. It can be quite an affront to our sense of justice that we might actually have to get even sicker and be sick for many years more in order to get well... and to have to avoid the sun, bright lights, wear funny glasses, and cover ourselves in leather in the sun for a number of years to boot. As if we have not experienced ENOUGH social isolation. (And to have the person bearing that news be someone whose personality also affronts us? Well now....)

    Oddly, because of our choice--those of us who are doing the MP--and how people react to it, we find ourselves isolated even among the online community of chronically ill people. We know we are involved in an experimental treatment. We know we are doing something that may or may not have great benefit. We know we are taking time out of our lives to feel worse--maybe of the little time we have left. And rather than be appreciated for our willingness to take a risk, or at least be greeted with questions or challenges by folk in a friendly tone, we are often times thought to be fools for "following" Marshall. We seem to have become the pariahs of the pariahs. Note that this is the reason oreganix refrained from commenting about the MP before. Why I did not join in on discussions. You get your butt kicked a few times by people behaving as if you were associating with Charles Manson himself, and you shy away from participation.

    I could see if I were having to defend muscle testing (I understand how people do not believe in this; I seriously doubt that Marshall would, and yet I believe from experience that there is something to it... and not just because a practitioner gave me something that made me feel better) or some other treatment where there is little understanding of how it operates. However, as someone who has looked at the science and has thought that it made more sense than the other science out there, I don't see where I ought to be having to defend the protocol every time I want to be a part of an online community. Explain it yes; defend it and myself no.

    For me it is a matter of tone, how people approach people on the MP. It is like we are being approached with a whip and a chair. Down, down you beast!

    If given the hope of an anti-viral or vitamin supplement (such as Vit D3, which is being touted as curative and necessary when it may, in fact, truly be just palliative--about the same as any injected steroid--while feeding and allowing L forms to grow) that will make me feel better tomorrow or at most three to twelve months, I understand how one might find the MP's challenges objectionable and want to hold out hope. That is, be very hostile to even the idea of the MP.

    That's not saying I don't believe that people are also hostile because they've done their research. They may be. As I've mentioned, people reach different conclusions with the same data.
  11. dannybex

    dannybex Senior Member

    Hi Sheesh

    And, some people, even with severe CFS, have recovered or improved substantially without having to resort to any drugs at all, but instead by addressing each stressor (bacterial, fungal, chemical, environmental, etc..), repairing and restoring gut (and thus immune) function, and also stopping the push/crash cycle (easier said than done). Yes, it's rare, but it can and does happen. Some of course do also use some antibiotics or antifungals at some point.

    Perhaps, but that may also be a huge assumption.

    Ironically, these very same symptoms have been reported by many, after increasing or restoring their 25-D levels, either by supplement or sunlight exposure. Decent, "normal" fevers for the first time in years, along with the other "normal" symptoms of a functioning immune system. In fact it has been the key to several people in our local group finally improving after having plateaued at say 50% or 60% improvement. :)

    I TOTALLY AGREE. Can you believe it? :)

    It's just the 'how' that we disagree about.
  12. Sheesh!

    Sheesh! Guest

    I too agree.

    Yes, some people, even the very sickest, have recovered. And so no matter what happens to me on the protocol there will be people who assume that my turn around in health was despite the protocol and not because of it. How do we really know that the folk who used these alternatives improved because of them and not in spite of them? Research goes on. There are no doubt different roads to recovery.

    I tried many alternatives--like many of us with CFS--, and I credit my being able to hang on as long as I did to them. Had I not taken steroids at some point, I may have been one of the ones who would have recovered instead of becoming totally debilitated.

    "Assumption." Yes, the assumption is that L forms that cannot be seen are being killed, causing labs to raise. Take away the meds and the labs return to normal unless taking away the meds leads to organ damage. I wonder how many other medical protocols operate under assumptions that someone might find huge.

    And if Marshall is correct, the people who have consumed D in those levels will eventually become sick again because they are palliating their symptoms. If you follow the MP science, it makes perfect sense that most people feel better with added D. Also, it is quite conceivable (as another example of how D might prove to be the thing that cures when it may only be palliating) that someone who has been on the MP for a long time and then quits, will have improved enough so that Vit D will palliate their symptoms. I always felt healthier in the summer and then when winter hit, I would be flat on my back. Does that mean I ought to live at the equator, or perhaps is something off with my system and the sun is not all it is cracked up to be in terms of making me feel better? There are so many variables that what we have at the moment are mainly assumptions. (See the first link I tagged that talks about the long-term study showing people having a greater chance of illness following 15 or more years of supplementation with D. Now that could be something else. You decide for yourself.) So only time will tell.

    Yes, I agree it is the how that we disagree about.:) (We may disagree about what recovery looks like though.)
  13. Mark

    Mark Former CEO

    Sofa, UK
    Hi Sheesh,

    I'm sure you recall some of my brief, critical posts earlier in this thread some days ago. Having now seen how the thread has developed, and read some of your posts, I'd like now to apologise for any offence I caused you. As others have said here, I most certainly didn't intend, and wouldn't want to cause offence to any PWC on the Marshall Plan. I do strongly believe that with everything we have to deal with, it's important we all stick together and be supportive of each other no matter what treatment choices we make.

    I was writing with a sense of concern - thoughtlessly expressed perhaps - for all of us as vulnerable people who are open to exploitation and are obliged to spend an awful lot of money on what are often ineffective and even profoundly damaging treatments (all of us are or have been in that situation one way or another). I gave an honest first impression in the heat of the moment, based on one web page, and having read some of what you're written I can see that I may have been somewhat closed-minded. They were my first impressions, and I suspect there would be a pretty large number of people who would feel the same way, but your posts have pursuaded me to now say instead that the MP stands a long way outside mainstream medicine, and pretty much on its own with some unique and unconventional ideas, but as a theory that stands so far outside the mainstream, that can perhaps provide some explanation for the peculiarities of the organisation, and who knows, there may be something in it.

    I'll be honest: there's still nothing I've heard about the MP that appeals to me personally as a treatment option. I'm still very suspicious of it, and I remain convinced that XMRV will prove to be the explanation for our condition and that far more straightforward treatment options than the MP are on their way. I also think it may be questionable that this thread sits under the XMRV section because as far as I can see, the MP, of its very nature, doesn't really have anything to say about XMRV. I'd strongly encourage you to look closely at XMRV: I consider it the first ever credible 'mainstream medical' explanation of our illness and the case to me is quite compelling: I do wonder whether you, like many of us, would have looked outside that mainstream model if we had had the option that now seems to be opening up for us.

    I'm also still very concerned about the whole concept of a closed treatment protocol without supervision by MDs and with very believable and disturbing stories about many aspects of Dr Marshall's behaviour (a PhD advertising himself as a doctor in a medical context being a pretty big one); I wasn't aware of any of this background when I posted and I'm pretty sure many of these aspects are rightly illegal in much of the rest of the world. So I'm still very concerned indeed about what I've read.

    But I have to also say that thanks to this thread I can now see that there are some very intelligent and decent people such as yourself on the programme, I sympathise greatly and understand and respect the choices you have made, and I really don't mean any offence or disrespect to you personally, nor to anyone else on the MP, by anything I've said.

    There's so much interesting stuff to pursue around XMRV, not to mention some vital and urgent campaigning work here in the UK that has a chance of finally lifting us out of the desperate political situation we have over here around CFS/ME/XAND, so I'm going back to those threads now, but I do wish you all the best.

  14. Sheesh!

    Sheesh! Guest

    Thank you Mark for what you wrote.

    As I mentioned before, the website is operated the way it is operated because it is not meant to be a site for primarily discussion purposes. It was originally started for a cohort (I became one) of people to be studied online. The board could have easily closed the site once the number of people on the cohort exceeded their ability to follow them. Instead, they have left the site open (but not the cohort) for people to read about and ask members and volunteer moderators about. That's why our time is limited. We do not have endless hours for debate. (Even though I have spent some time here trying to correct just some of the misperceptions about the MP.)

    I am following the XMRV research. It would be silly of me not to. And despite Marshall's comments, he will be no doubt following the research as it comes out as well. However, if people are looking the XMRV with hope because of what has been accomplished with HIV to date, I have to say that I do not stand among them in that hope, as many people still die in relatively short order after years of battling AIDS related infection and debilitating symptoms.

    This conversation ended up here because Cort opened up the thread with Marshall's comments on XMRV and the discussion deteriorated. I jumped in after it had already gone down hill fast.

    As I mentioned earlier, a person cannot do the treatment without a doctor prescribing the meds. It is up to the doctor as to how involved the doctor gets; there's even a place on the site for health professionals only. (However, I've been told that that is mainly where doctors and other health professionals spend a lot of time talking about their experience on the MP with each other, which has to be helpful in their understanding how to treat patients.) If a person did not have a doctor, the person could not be a member of the cohort.

    Dr. Marshall has a PhD, a long discussion could be had as to why his background makes him uniquely qualified for the molecular modeling work he is doing. Marshall does not hold himself out as an M.D. NOT. I don't know about the rest of the world, but in the U.S. if you are a Ph.D., people call you doctor, as a Ph.D. is a doctorate.

    Thanks again.

    (And yes, the MP is a singularly unappealing treatment option. "Please, someone get me a hot poker so I can gouge my eyes out!!! Or perhaps my right kidney!" No, it is not pleasant, it is long, and it is initially isolating--and when I say initially, that could be a few months to several years isolating. And if not physically isolating, then socially isolating for many because friends and/or family may disagree with the treatment. People who knew me to be a competent professional prior to total disability only needed to know that I was doing this offbeat treatment to use my previous MCS diagnosis--I had not let on that I had CFS and fibro--to determine that I am psychologically unbalanced. As if we don't get that anyway with CFS. Despite that, there are quite a few of us who have decided that it is our best option for wellness. There are also some people who are doing the MP who are out in the world of work--who had yet to become totally disabled--and are managing to keep their jobs despite the adjustments they might have to make, including working while feeling worse and wearing funny dark glasses indoors.)
  15. dmarie4301

    dmarie4301 Guest

    95%, not 67%

    I dont know anything about Marshall, but he quoted the 67% stat, which as we all know was upgraded to 95% with further sensitive testing. 95% is something pretty d.... significant.
  16. hvs

    hvs Senior Member

    Sorry, can't resist....

    Everyone should please refer to me as Dr. HVS, then.

    I'll try to resist dispensing medical advice.
  17. ramakentesh

    ramakentesh Senior Member


    to be honest while I think he has some strange ideas, his arguments about XMRV and the institute have merit. Its unusual for a professional to come out after a study and make a variety of claims about the virus before there is any real secondary evidence to their finding.
    In my opinion the XMRV thing is too good to be true. The very concept of the word XAND is literally jumping the gun - even if it is present ofcourse there is not a shred of evidence so far that it is the causal agent in CFS and related disorders.
    If you read the article in the Nevada newspaper apparently the scientist decided at her first conference on CFS that it was a retrovirus and then managed to successfully find the first retrovirus she looked for in the majority of patients tested. Its possible that this is all just luck, but how likely is that? Before their work was even published they were alreadt adopting and using the CFS models that are based on immune cell abnormalities. That is an assumption to begin with.
    I think that if this is yet another let down its going to frustrate the CFS community even further.
  18. Aftermath

    Aftermath Guest

    Another Letdown?

    I sincerely hope that you are not correct, but I have had this thought in my head for quite a while now.

    Many of us have been sick enough long enough to remember Dr. Jose Montoya's paper on the suspected role of HHV-6 in this illness in 2006. Regrettably, his theory did not pan out in a larger follow up study--yet nearly every one of us went out and got tested for HHV-6 at the lab he used (Focus), etc. Many went on Valcyte, which is not a benign compound to say the least.

    That being said, Montoya's paper was not published in a journal nearly as prestigious as Science. Moreover, Dr. Mikovits and her colleagues are very bright people. The course that they are on (making some very bold claims unlike Dr. Montoya who was fairly reserved) will essentially make or break their careers.

    At this point, with how many eggs that they have put in the XMRV basket, it looks like WPI will either produce a Nobel Laureate or end up a shuttered laughingstock within a year or so.

    I sincerely hope that it is the former that is true and not the latter.

    Still, as always, I urge caution to those who feel that this is the smoking gun that will sink Reeves, White and Wessley. It may very well be (and I hope that it is), but you need to wait another six months until the proof is there. Otherwise, you run the substantial risk of adding even more embarrassment and frustration to the cause.

    Sharpen your blades and keep your powder dry. Still, you need to wait until we can see the whites of their eyes before commencing attack.
  19. ramakentesh

    ramakentesh Senior Member

    Oh yeah I hope its true as well - but something about it just seems a little confused. Even the case definition of CFS seems odd - patients had to have Oi or autonomic disfunction as an example (I guess I should be happy since POTS is one of my main problems) yet there is not one mention in any of their work about how these suggested immune abnormalities result in these measurable autonomic disfunctions or how XRMV plays a role in these.
    I am concerned about the history of the discovery itself. How often does someone who wasnt actually employed in the profession at the time, walk in, say yepp its this, test for it and find it? I guess it could happen??
    And is Science more respected than the New England Journal of Medicine?
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama

    The term XAND is intended to refer to whatever illness XMRV infection causes. I don't think it was meant to refer just to CFS patients, especially, as Mikovitz knows, many have been given that diagnosis who may have other illnesses, such as depression. (See CDC)

    I think y'all are also forgetting that National Cancer Institute and Cleveland Clinic also authored this study publication. They verified it. So unless WPI spiked the blood, then it was there. And those scientists are banking their reputation on this as well.

    Now, as has been pointed out, a similar conclusion was drawn in the discovery of HHV-6. But this is a retrovirus similar to AIDS, heck, some researchers were saying CFS is actually non-HIV AIDS. So the increase in lymphomas and immune system problems is what made her brain light go off saying, "that's a retrovirus." Also, from the mid-1980s and even stronger into the late 80s and early 90s, those close to the action were saying it looked like a retrovirus.

    So, this retrovirus is found in prostate cancer patients with an immune system problem also seen in CFS patients. It is only logical that maybe this virus might also be in CFS patients.

    Also, not only was their deductive reasoning, but there was process of elimination. "Ok, is it EBV. Nope, check it off the list." then... "Is it HHV-6. Nope, check it off the list." then...

    Well, you get the idea. With each elimination you get closer to finding the right answer. And included in the deductive reasoning was that it had to be something altering the immune system. This is because the immune system is compromised allowing all these latent viruses flourish. Natural Killer Cells are down. T Cells are down. Now, what would do that?.........


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