The XMRV tree

lucy

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I think it is important to make trees, discuss them and improve them together. Or, maybe it is impossible to make a single tree, because for everyone with CFS the roots and trunk will be different, but the branches and foliage, representing conditions and symptoms are the same. So we are in a forest, and it is very dark, because there are so many symptoms for each person.

There is an open source tool called FreeMind, which can be very usefull to create such trees, and mind maps can be exported in different formats and published online.

As for XMRV I think everybody has to determine his own relationship with it in terms of beliefs (because facts are as scarce as hens teeth). The same holds for all the other theories. It is essential to classify information wich can be taken as a fact, or a possibility, as a symptom and a cause. An example would be EBV virus in adults - it can hardly be a cause of CFS, if you read that there are many factors that can reactivate EBV. Nevertheless, it could be a co-factor in keeping CFS chronic, but again this is a possibility and not a fact.

It is too expensive to have feelings in terms of energy :)
 

Bob

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One of the most frustrating things about this forum, is the constant insistence, by the vast majority of forum members, that XMRV is the cause of CFS/ME. There is no proof whatsoever of this is the case. Even Dan Peterson himself, has gone on record, numerous times, saying that the retrovirus could very well just be a passenger to another condition that takes advantage of a depressed immune system.
Hi JPV,
You are right, of course, that there is not yet any evidence that XMRV is the cause of ME.
And many of us are pinning our hopes onto XMRV, rightly or wrongly, and we will be disheartened if the research comes to nothing.
But, in my opinion, the unfolding XMRV research is very hopeful, and it has certainly stirred up an unprecedented flurry of interest in ME in the scientific community and the health authorities. More than I have ever seen before. I think for this reason alone, XMRV research has done our disease a lot of good.

You seem to have a strong resistance to the possibility that XMRV may cause ME, but if further studies confirm that XMRV is a real human virus, and that it exists in such a very high percentage of ME patients, then I believe it is very likely that it will be shown that XMRV is at least a factor in causing disease in ME patients. I believe that this is cause for much hope, as antiretrovirals have already been shown to be effective against XMRV in laboratories, and there are also some anecdotal cases of individuals successfully receiving antiretroviral treatment.

There are many indications that XMRV may cause disease and inflammation, based on the behaviour of MLV's and other retroviruses. Even if XMRV infects people by taking advantage of a weakened immune system, it may still cause symptoms.

That being the case, this chart of yours seems to a very premature and speculative assumption of the situation... to say the least. In which case I really question it's value.
I think you are being rather dismissive here... You may not see the value in Francelle's post but she, and others, obviously do.

There may be no proof that XMRV causes ME, but that doesn't mean we shouldn't discuss the possibilities, and speculate and hypothesise etc. That's what a discussion forum is for. I'm sorry that you find it so frustrating.

XMRV may prove to be the cause of ME, so I don't understand your stance that we shouldn't discuss the possibilities freely and enthusiastically. You don't have to, of course.
The research into this new human virus is at such an early stage that I don't understand why you are quite so dismissive about the possibilities. The possibilities are extremely significant for us all.

Personally, I believe that XMRV is looking more and more likely that it is going to be proved to be the cause, or at least a contributing factor, or co-cause, of most cases of ME/CFS, and possibly some other diseases. This is my belief based on the research which is unfolding. Personally, I hope that it is the cause of ME because I believe this gives us a lot of hope for the future in a number of different ways, including treatment possibilities.

Perhaps people's desperation to finally be vindicated, that they are really sick and it isn't all in their head, has caused them to ignore some cold hard facts, including numerous comments from research member Dan Peterson that XMRV may indeed just be a "passenger" to a broader condition.
Yes, we all want to be vindicated and validated, but XMRV is bigger than that. I think that you might not have been following all of the unfolding studies and news if you think that we are not basing our opinions on facts. Judy Mikovit's research, Harvey Alter's research, and the European and Japanese studies have given us some evidence and facts, even if it's not yet absolutely, solidly, confirmed facts. Dan Peterson's comments are not 'cold hard facts', they are his opinions, so I think you may be basing your own opinions on others' opinions rather than being open minded to the unfolding evidence relating to XMRV.

Not sure why the prospect of having a virus excites you so much. How many viruses, in the entire history of medicine, have we found cures for?
Anti-retrovirals have already been tested successfully against XMRV in laboratories, so this gives us hope. HIV might not be cured yet, but I think that most HIV/AIDS patients, in the West, lead lives without incapacitating symptoms for many years, after infection with HIV, as long as they are being treated.

I'm of the opinion that researchers like Martin Pall, Kenny De Meirleir, Rich Van Konynenburg and even Freddd are far closer to uncracking this thing that WPI is.
I'd be interested if you could share any research information with us in relation to these researchers.
I'm not familiar with the work of Pall, Konynenburg or even 'Freddd'.
 
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Hi Bob,

You can find an overview of Martin Pall's work here and a collection of Rich Van Konynenburg's papers at this link. (Rich is a member of the forum.)

As for Freddd ...?!

Sam

ETA I see Freddd is a forum member with an interest in vitamin B12.
 

Bob

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Hi Bob,

You can find an overview of Martin Pall's work here and a collection of Rich Van Konynenburg's papers at this link. (Rich is a member of the forum.)

As for Freddd ...?!

Sam

ETA I see Freddd is a forum member with an interest in vitamin B12.
Hi Sam,

Thanks for the info... I'll have a look at that later...

Ah, our very own Freddd!
 

muffin

Senior Member
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One of the most frustrating things about this forum, is the constant insistence, by the vast majority of forum members, that XMRV is the cause of CFS/ME. There is no proof whatsoever of this is the case. Even Dan Peterson himself, has gone on record, numerous times, saying that the retrovirus could very well just be a passenger to another condition that takes advantage of a depressed immune system.

That being the case, this chart of yours seems to a very premature and speculative assumption of the situation... to say the least. In which case I really question it's value.
-------->>>> The very real problem is that no one knows just what this newly discovered Retrovirus family causes. I suspect it plays a role in ME/CFS. I also suspect it plays a role in other diseases and cancers as well. But we do NOT know what it does since there is very little funding for research on this virus. I am stunned and amazied that no one outside the CFS community is aware of this newly discovered human infectious retrovirus. I do believe it is infectious - and of course, I do believe it "exists". Someone want to give me a reason why my husband is very sick with CFS after living with a sick wife for 10 years? We both got the same kick-off virus (for me) at the same time but he recovered. Ten years of me being sick and he gets another mild virus and down he went and has stayed for the last six years. He's a poster child for CFS. He's also a male that got sick at age 60 with all the symptoms of CFS except for pain (lucky).
We need funding for research and fast moving clinical trials. IF those anit-viral meds help or cure those of us with ME/CFS then you have your answer - just NOT in the way YOU want it. That's medicine for you. They have meds that work but they can not expain WHY they work - read the inserts in the meds and see the statements that they don't understand the mechanisms of action.
 
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One of the most frustrating things about this forum, is the constant insistence, by the vast majority of forum members, that XMRV is the cause of CFS/ME. There is no proof whatsoever of this is the case. Even Dan Peterson himself, has gone on record, numerous times, saying that the retrovirus could very well just be a passenger to another condition that takes advantage of a depressed immune system.

That being the case, this chart of yours seems to a very premature and speculative assumption of the situation... to say the least. In which case I really question it's value.

JPV everyone can think whatever they want, but the other two know to man retrovirus do cause problems and cause a compromised immune system, it's already been proved that XMRV causes problems, how many people here have had many tests done only to find that they have very very low levels of natural killer cells this would be because the virus infect cells including t cells which makes you have a compromised system and this is why CFS patients pick up many virus and bacteria because the immune system is so busy trying to fight XMRV that you get infected with whatever else you come in contact with, this would also explain why some people get CFS symptoms suddenly specially when the are younger because as they grow older they pick up more and more crap along which eventually takes a toll on your immune system, get it in your head people XMRV is not a passenger virus it becomes part of your DNA, once you have it they only way to get rid of it is by you dying there's is no cure for a virus but there will be treatment for it hopefully very soon, as we have seen it with HIV + people the vast majority of them can have very normal lives and live a close to normal life span, the good news about XMRV is that it does not progress as fast as hiv which means it could be much easier to treat with way less toxic meds then hiv meds, we have seen a lot of people in this forum that have had me/cfs since the early 80's and are still around us and never had any type of treatment except for vitamins, how many people that got infected with hiv in the early 80's are still around? probably not too many, so as we can see this virus may be a lot easier to treat...
I know i can't prove to you that XMRV in fact does cause problems but i don't need a science paper to tell me something i already know, before i came to this forum i was at thebody.com and poz.com because i thought i have gotten HIV after a risky encounter and started to get many symptoms and health problems which i still have today, anyways many people kept getting tested for hiv for many months thinking they had gotten some werid new strain of HIV because they kept testing negative for it and it turns out a lot of them already tested positive for XMRV which is what they got by having unprotected sex, the reason they kept testing for HIV is because all of them got sick afetr risky encounters, all of them got many OI's and other health problems like candida,swollen tongue with teeth marks around it,white thrush, cognitive problems, skins rashes, IBS problems, urinary tract infections, fatigue,throat infections abdominal pain, lower back pain, confusion, brain fog, joint and muscle pain and many other does this sound familiar? none of these people including me had any history of having any major health problems but after there risky encounters all of them got sick and are still sick this day and at least i have talked to 16 people from this other forums that tested positive for xmrv already,, do you really think all this is just a coincidence? is it also a coincidence that one couple starts out by having one member sick and then the other one becomes sick as well maybe months or years later? is it a coincidence too that many mothers with CFS have children who develop some sort of unkown disease later in life? is it a coincidence too that many people who are still struggling now a days with CFS have a family history of early deaths and weirdd types of cancers or have a history of having a father or a motther who was always sick..... i know all this sounds too harsh and i know that there is gonna be cases of CFS that test XMRV - but for those who do test + most then likely your health problems are due to this damn bug...i know also there's going to be people that asks why is there xmrv+ people that are healthy there's an easy explanation for that everybody and every immune system is different as we have seen also with HIV there's people that get it and develop full blown aids within a couple of years and there's other who get it and don't show any symptoms for two decades, i personally know someone who is HIV+ going on to her 18th year with it and she is healthier than i am and she's not on meds..
 
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-------->>>> The very real problem is that no one knows just what this newly discovered Retrovirus family causes. I suspect it plays a role in ME/CFS. I also suspect it plays a role in other diseases and cancers as well. But we do NOT know what it does since there is very little funding for research on this virus. I am stunned and amazied that no one outside the CFS community is aware of this newly discovered human infectious retrovirus. I do believe it is infectious - and of course, I do believe it "exists". Someone want to give me a reason why my husband is very sick with CFS after living with a sick wife for 10 years? We both got the same kick-off virus (for me) at the same time but he recovered. Ten years of me being sick and he gets another mild virus and down he went and has stayed for the last six years. He's a poster child for CFS. He's also a male that got sick at age 60 with all the symptoms of CFS except for pain (lucky).
We need funding for research and fast moving clinical trials. IF those anit-viral meds help or cure those of us with ME/CFS then you have your answer - just NOT in the way YOU want it. That's medicine for you. They have meds that work but they can not expain WHY they work - read the inserts in the meds and see the statements that they don't understand the mechanisms of action.


I think you are right i think XMRV plays a roll in ME/CFS, MS, Fibro, autism, leukimia, cancers, i have been following a MS forum as well and many of them got sick after they had unprotected sex and were diagnosed with MS, right now im being seeing by a major hospital in Chicago and the first possible diagnostic was MS due to the many symptoms and weird looking brain MRIs, all this after i had a broken condom incident like 7 months ago and even if a keep telling all the damn doctors it's something infections i got sexually transmitted they are sticking to their damn MS diagnostic when i have no previous history of having any MS episodes..i wish somebody would pursue the idea of selling the virochip like the one they used to discovered XMRV, it would be a major breaktrough for our health system because it would make diagnostics a lot easier and faster..
 

Sean

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How many decades has HIV research gone on without substantive results?
People with HIV don't die from AIDS anymore, and get to live more-or-less normal lives, (provided, of course, they have access to the right drugs). Seems like a pretty substantive result to me.

I don't know if XMRV is the cause of our problems, (and in one sense I don't care what the cause is, I just want to know what it is). But I do think the XMRV is the most promising thing I have seen in the entire time I have been sick.

I most certainly do not want to go on living with the appalling social stigma resulting from the mountain of endless psycho-drama morality-play speculation by so called objective scientific experts. Had more than enough of that, thank you very much. I would much rather take my chances with a virus.