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A Moment of Reflection: Please Read!

Discussion in 'XMRV Testing, Treatment and Transmission' started by Ecoclimber, Jun 5, 2010.

  1. Ecoclimber

    Ecoclimber Senior Member


    :Retro mad: ​
    Last weekend's thread about the delayed press release from the CDC concerning xmrv and CFS, demonstrated the angst among many of the forum members regarding xmrv and CFS. The discussion worried me as well as, I am deeply concern that if xmrv doesn't pan out as expected, this will cause a devastating impact on the emotional well being of many members on this forum.

    I sincerely believe that we all need to pause, step back, take a deep cleansing breath and put things in relative perspective. There seems to be an underlying premise on this forum that xmrv is the caused of CFS. Without further validation, I believe this does a disservice to the entire CFS community to make inferences that haven't been proven through clinical research and which may lead to false expectations and disappointments later on. It may or may not be, but until further research validates this claim, we need to be mindful of the fact that there has been no other replication study to date except for the many negative flawed studies from abroad and until such studies and further research is disclosed on causality of xmrv and ME/CFS we have to approach this issue with an open mind. Just recently, Dr. Huber of Tufts University conducted a study on 238 ME/CFS patients for xmrv and she came up negative, nada and was extremely criticized by the CFS community.

    "It's premature to conclude that XMRV causes CFS," Columbia University virologist Vincent Racaniello wrote in an e-mail. "It is still very much up in the air." But according to Racaniello and Columbia University retrovirus specialist Stephen Goff, almost nothing is known about how the virus is transmitted, how many people may be infected, how the virus affects people, where it came from or the usefulness of the test.

    Is it the puppet or puppet master? Does it show up in all people with suppress immune systems? Cort:D has placed a straw poll on this forum and so far that there is a slight majority of those who have CFS but are xmrv negative. I myself proved xmrv negative even though I had been diagnosed under the Fuduka and CCC criteria and I am on level 2 according to Dr. Lerners criteria. So where does that leave all of us CFS patients who are xmrv negative? What do ME/CFS patients now tell their doctors after spending so much time and energy convincing them they had a retrovirus? Talk about embarrassing :ashamed: Maybe xmrv is only in a certain subset of ME/CFS patients? So until further research is completed and a valid replication study completed, we must have an open mind.

    What I am concern about is that with all this "HYPE", patients are taking unnecessary risks by taking highly toxic HIV medications with severe side effects even though their tests prove negative for retrovirus etiology. You may build up a resistance to other retroviruses later on. We all know from following the treatments of others on here that various treatments seem to affect only a certain subset of ME/CFS patients. Ampligen works only on a certain subset of ME/CFS patients. Anti viral medications only work on a certain subset of ME/CFS patients. LDN only work on a certain subset of ME/CFS patients. We don't know why that is. That is why we need the research to confirm some facts and disprove other facts and that will take time.

    What ever happened to the research back in 2000 when Dr Charles Engel, who was with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma fermentans" and a report from The New England Journal of Medicine reveals that one of the first outbreaks of chronic fatigue syndrome was in Punta Gordo, Florida, back in 1957. It was a strange coincidence that a week before these people came down with chronic fatigue syndrome; there was a huge influx of mosquitoes??? They also reported that it caused AIDS, cancer, chronic fatigue syndrome, Crohn's colitis, Type I diabetes, multiple sclerosis, Parkinson's disease, Wegener's disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer's. Kind of rings a bell with xmrv, doesn't it?

    Dr. OS states on CFS "Because people with these conditions spend more energy on producing energy, so they have no extra energy for life. This lack of energy to do anything but process energy especially plays out in the hypothalamus gland in your brain - which balances the energy budget in your body. That little neurological doo-dad that links your nervous system with your hormonal system uses more energy than any other place in your body. So when the systems that produce energy falter, you can feel exhausted, yet suffer from insomnia."

    Further researching the CDC site and other Govt. sites indicates catastrophic exhaustion associated among patients who suffer from neurological diseases such as MS, Parkinson, Alzheimer, CFS, Fibromyalgia and ME. It seems that the immune system becomes overwhelmed in fighting these illnesses and has no ability to generate energy for the rest of the body.

    In 2008 Dr. Heuber in her research identified a retrovirus HERV-K18 in our DNA that could be activated by EBV, HHV-6 or mono in CFS patients. CDC is now recruiting for CFS patients for treatment on Ampligen. So there is a lot of research going on and it is to early to get hyped up on only one aspect of the research and ignore the other research studies being conducted.

    The bottom line is that we must be cognizant of the fact that we are in the early stages of xmrv research and the entire ramification from future research results is still out there. It is an exciting time for sure, but still we must approach xmrv with the mindset that it might not be the silver bullet for our cure! :worried: The researchers and the labs and the government agencies all have their agendas and the fight continues and we must wait until the fallout stops. In the mean time we must remain neutral, relax, observe but do not get caught up into the hype. We may get burned again!

    I believe everyone should read the article written by Dr. Suzann Vernon of CFIDS: WE ARE NOT ALONE She hits the nail on the head and it should be our approach and mindset within these forums whenever we discuss xmrv.

    FINALLY: I am appalled as I know all of you are at the researchers, the research labs, govt. agencies and other organizations who continue to fight among themselves acting like a bunch of school kids over the investigation of ME/CFS. It is appalling and it is despicable conduct on the part of scientists who claim to be professionals and who engage in such vitriolic attacks against one another concerning their research at the expense of patients suffering from such devastating and debilitating diseases. It is unconscionable! On the other hand, there are professional research scientists who are mindful of their patients and they set their egos aside and work to provide an atmosphere of cooperation and coordination among their colleagues within their research community to solve the issues effecting their patients.
  2. omerbasket

    omerbasket Senior Member

    Listen. It's not that we say XMRV causes ME/CFS. No human being knows that yet. But it is the strongest possibility a human being ever found until now, I think. Therefore, we are really pushing for it to be investigated fully, by people who wants to find the truth.

    By the way, the fact that more than 50% of the people who voted on the poll here were not found to be XMRV positive does not mean they aren't. I believe that now when we have the serology test many of them would be found to be positive, and even about those who wouldn't, we still can't say for sure they are not XMRV positive, since the testing methods are not yet finalized.

    It might be very disappointing if XMRV would be found as a virus that does not cause ME/CFS. So you know what? Some people would say that you shouldn't have hopes, in order not to be disappointed. My way is to have hope even if it means that sometimes I would find myself disappointed. People here are not stupid. They know what are the possibilities. When they start to take antiretrovirals, they know that these are dangerous drugs, that XMRV might not be the reason for their sickness, and that unless they tested positive for XMRV, they might not even have XMRV. BUT IT IS THEIR RIGHT TO CHOOSE FOR THEMSELVES WHETHER THEY WANT TO TAKE THE RISK OR NOT. NO ONE WANTS TO HAVE THEIR SYMPTOMS INSTEAD OF THEM, AND THEREFORE NO ONE CAN TELL THEM WHETHER THEY SHOULD TRY A DRUG OR NOT. Moreover: No one knows how much time it would take to the science to be finished here. During that unkown period of time, these people are going to suffer if they don't do anything. It is their right to decide whether they want to wait or not.

    There are people who don't believe that XMRV cause ME/CFS. Many of them are people such as Wessely and Van der Meer, who have an intersest in not finding the biological cause for ME/CFS. There are other people who firmly believe that XMRV is a very big deal here, people such as Nancy Kliman, David Bell, andf ofcourse, Judy Mikovits. They might be wrong. They themselves would not say right now that XMRV causes ME/CFS. They say we need more research. But they are optimistic about it. We are allowed to be optimistic about it too. Everyone can have their own opinion.

    And forgive me for disregarding Dr. Vernon's thoughts. I just think we should not regard thoughts by people who tries to find what does not cause ME/CFS.
    She might be right. But to keep it simple, you should first of all check if XMRV causes ME/CFS, and only if you make sure it doesn't, you should move on to other explanations or more complicated explanations.
  3. redo

    redo Senior Member

    And about the findings in the other studies; if they get 0% in both the healthy and sick group. How do they know their test works?
    Can they be sure that a test works if they don't get any positives?

    They try to do a PCR in the lab (not on human blood). If they can get the PCR process going on a known sample of XMRV, not from human blood, then they just assume that the test works, and they publish their results, with 0%, 0% for the world to see.

    If that was the case, then why would a lab patent their technique for analyzing the samples. If it was just to get it going to find it in the lab (which is much easier).

    I think these assumptions come from experiences with other infections which are in high loads in plasma. And not infections such as XMRV, which may very well have the lymphoid organs as one of the main reservoirs (naturally it's hard to find it in the blood, if it doesn't stay in the blood in large numbers).

    You have many valid points there Ecoclimber.

    But at the same time, you have to take into account that people are different. Some may prefer - like yourself - not to get their expectations up, because of the 'fear' of being let down. While others are opposite.

    Personally it doesn't costs me much emotionally to be let down. But it costs me a lot not to keep expectations up.
    That said, I don't think getting rid of XMRV would be enough for the patients, but I think it would be an important step towards recovery.

    I respect that people may think it's not an important factor, (or don't let themselves believe it fully, in fear of being let down). While I at the same time respect those who think it's the cause of all of the symptoms. There are science to back up both views (however you interpret the findings). And it's OK to both believe or not believe. And keeping hopes and expectations high or low. It's a personal choice.
  4. Ecoclimber

    Ecoclimber Senior Member

    A moment of reflection

    It is a height of irresponsibility and recklessness to offer Non Approved FDA off label use of highly toxic HIV drugs to patients who do not have HIV or a retrorvirus. It violates FDA rules, Ethical Standards and can cause that doctors license to be revoked and if something happens to the patient for non appoved medication, that doctor is open to malpractice liability. Talked to an immunologist and infectious disease doctor. I have and they said it is irresponsible to prescribe such medication since dosage and effectiveness has not been proven in any clinical trials. That is why Judy Mikovits, Nancy Klimas, Luncinda Bateman, Dr. Peterson and Dr. Lerner is opppose to such approach to treating xmrv. How do I know this is becasue I communicate with them all the time!

    That is one of the fall outs of this this type of 'HYPE' that is on this forum. There has been NO valid replication study to date indicating the causality between xmrv and CFS. To speculate only gives rise to false expectations and hopes which has no validity in factual research results. Until research from other reputable labs verify the claims and results of WPI, then it is not considered vaild research and proof. Any speculative comments or statements as being factural in relationship to scientific validity does a great disservice to this community as it raise false expectations and hope and should not be expressed until such facts can be substantiated through research. That is the scientific research methodology....clinical trials and control groups. Any member who states a speculation, their own opinion or theory as a scientific fact without verification or basis from a valid research trial should be banned from this forum! This forum is not the cult of xmrv where opposing views or concerns expressing other possibilites are shouted down and attacked. Xmrv may or may not be the silver bullet for CFS but the jury is still out and to make statements as though it is fact is the height of irresponsibility.

    I talk to Annette Whittemore, Judy Mikovits, Dr. Bateman. Dr. Vernon, Dr. Goff, Dr. Hueber, Nancy Klimas, Dr. Montoya DR. Coffin, DR. Lerner as well as other leading bio labs across the country on a frequent basis and that is why I can say the things that I am writing about in this thread. It is difficult enought to be raisning money to fund research for CFS but nearly impossible if there is an atmosphere of confusion and controversy surrounding the research. The research has to be solid through validation from other credible researchers and labs before donors will provide resources to fund further studies. Controversial speculation and mud slingling destroys my chances of finding research funds for many of these organizations.
  5. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Matlock, Derbyshire, Uk
    In pursuit of a levl playing field

    Given the potential cost of treating a large population of XMRV+ve people, is it not just possible that governments worldwide might not want their public health agencies to find such a pathogen - it's cheaper in the short term just to keep us where we are ....... in limbo.

    I think that in the course of your analysis, you have overlooked the fact that this is not a level playing field - and we (the patients) have always been playing uphill ! :Retro mad::Retro mad:

    That isn't to say that I don't agree with the sentiment in your post - that we have to remain very very patient ...........difficult when you're suffering every waking hour.

    Could it perhaps be that some of the humour that was going on in that thread has been misconstrued ?

    IMO the anticipation and subsequent dissapointment that we shared last week was totally understandable. However, I think that it highlights how very careful (and accurate) we must be when contributing to the forum in order to avoid over-hyping a sensitive situation and hence building people up for a fall.

  6. natasa778

    natasa778 Senior Member

    Ecoclimber, here is my opinion :Retro smile: :

    you should try and chill a bit. Let go.

    I hope I am allowed to give personal advice to others ... on how they should feel about one subject or another ;) .Or are attempts at influencing one's emotions to be deemed inflammatory by moderators?
  7. boomer

    boomer Senior Member


    Thanks for this perspective. Professionally, compassionately and politely said!
  8. redo

    redo Senior Member

    Personally I think it's a height of irresponsibility to not let patients have a choice. It's their own body, they are not choosing for someone else. And if they were in a clinical trial, it wouldn't be that much of a difference compared to getting it from a doctor who can follow you up.

    Personally I would like to give this treatment a go.

    Is it more dangerous than many antiretrovirals? Yes.
    Do we know it would work? No. There have only been three patients using it for CFS before me.
    Would I be more at risk if I got it from a doctor who accepted that I'd try it, compared to getting it from a doctor in a trial? Probably about the same.

    I guess the only major difference from trying the Rituximab in a trial, compared to getting it from a doctor, would be that others could benefit from my experiences.

    I think you should respect that people feel differently about it, when it comes to the risk/benefit ratio of doing something versus doing nothing.

    You know very well they cannot say anything else. No matter if the drugs other chose would be exactly the same as the ones they'd choose themselves. I am not saying what their meanings are, what I am saying is that they cannot say anything else than what they have no matter what their meanings are.
  9. natasa778

    natasa778 Senior Member


    I completely disagree. Respectfully. I found Ecoclimber's post VERY patronising and inpolite. Personally insulting etc
  10. xchocoholic

    xchocoholic Senior Member

    Thanks for posting this in such a well thought out post. When the board was reorganized and XMRV got it's own section at the top, I was totally confused ... Good to see it's not just me thinking this is getting too much attention.

    I understand the urge to grasp onto a cure for CFS/ME but IMHO, it's never a good idea to promote an unproven theory as if it were true. Not only is it irresponsible, you're just setting yourself up for others to prove you wrong ... For better or worse, proving others wrong appears to be an obsession in science, particularly in biochemistry.

    BTW. Did anyone notice Dr. Vernon's comment about gut biology ? IMHO, this is where we need to focus our energies.

    Thanks again ... X
  11. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    I feel have posted a well balanced

    and informative thread. I agree with a lot of what your saying.
    The only thing I disagree with is your feelings on the irresponsibility of taking antiretrovirals.
    I feel if a person has been bedridden for years and is suffering greatly with no relief than it should be there right to give antiretrovirals a shot.
    Lots of people with CFS committ suicide because they have no hope for relief and it just becomes too much to bear. If these patients want to risk the side efffects I say it's there right too and It could be a smart move especially if they have tested XMRV positive and they are hanging on by a thread.
  12. Elliot


    Leicestershire, England.
    A fantastic post Ecoclimber, I too, am really worried about people with no retroviral markers taking really toxic things, it may be 'their body', but they are not doctors, or medical scientists and it'd be soul destroying in the long run if one had taken highly toxic antiretroviral drugs to find that their newly found retrovirus had built up an immunity or had become seriously [more] ill from the toxicity of the drugs(note: not a scientist, not sure on the validity of previous sentence; but seems to be what a few scientists are saying in regard to misusing retroviral drugs)!
    I can see why people are desperate, I haven't had ME/CFS for decades but I have had it for a fair chunk of time (six years) and have completely lost my teenage years, but the dangers of such toxic drugs and the desperation some feel.. from a purely objective view; could be construed as very dangerous, people will clasp at everything to try and get well! (which is also, sadly, how a lot of scammers seem to have wormed their way into 'miracle cures') :( But if people so desperately wish to take drugs which are dangerous and unproven to help, then I sincerely hope they work for you or provide some relief.

    I do hope that xmrv is the cause, it's odd to say it out loud, why would one want a nasty retrovirus? But I believe it's better than not knowing.
    As for the conspirational ideas about the government not wanting people to get well or something, the cost of care for people with ME/CFS on the NHS, here in the United Kingdom is quite a lot more than the average. I don't think the government would want to keep intelligent and able people from working, when they could be using their salaries to pay taxes?

    ps: sorry for the rambly nature of this post, not so great today so..ramble ramble..
  13. Mithriel

    Mithriel Senior Member

    Elliot said

    People with CFS don't cost the government much at all. There are no treatments except for the few centres which give CBT and GET by getting a group together and handing out leaflets.

    Many patients are refused even symptomatic relief and are not given tests even when they have other illnesses, like cardiac symptoms.

    If we are proven to be ill not only will we have to be given treatments, but all the benefits that are withheld will have to be instated and research money made available.

    It is not unusual for someone to go to the doctor and say they have a problem and the doctor says "no you don't". This is a very cheap option.

    I find it very patronising to be told what I should think about the research which is being done. I have followed the literature for decades and can make up my own mind.

    There has been nothing before like the WPI's work.

  14. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    I think you need to put all that energy you spent on schooling us into helping us! If you are regularly talking to that list of people you mentioned, then we could use your help. Keep us informed of anything you hear from them, no matter how insignificant you may think it is! And BTW it's impossible for most of us not get excited and maybe sometimes rush to judgement, it's the nature of this beast!!!!
  15. Angela Kennedy

    Angela Kennedy

    Essex, UK
    Good points Mithriel.
  16. Elliot


    Leicestershire, England.
    Hey Mithriel,
    my comment about the 'cost of cfs/me', was more to do with the lost money due to tax also, I can't get my head around why the government would want to put down hundreds of thousands of people who basically earn nothing, when if they were well, they could be earning much more and give a larger amount of tax?

    Such as this paper: (pulled up from google, brain's too fuzzy today to read through it all, apologies) If anyone wants to correct me on this then please go ahead, critical thought goes out of the window when I feel like this! :p
    E: Apologies for being a tad off topic by the way!
  17. omerbasket

    omerbasket Senior Member

    Ecoclimber, who are you to tell people what to do with their own bodies?
    Don't you understand? People here know that the WPI's study hadn't been replicated yet. They know that antiretrovirals are somewhat dangerous, and that we don't know the best dosage of them - if they work against XMRV - for treating XMRV. They are not stupid! But they have the right to choose whther to wait for science - which can take years or even decades - or not to. I don't understand why do you think that you are smarter than them.
    Most of us do not take antiretrovirals, and even most of those who tested positive for XMRV, do not take antiretrovirals. But there are some who decided to take it. It is their right.
    Is it a violation of FDA rules to prescribe antiretrovirals now? I definitley think not, even for those who have no evidence of being infected with XMRV. As far as I know, it's not only that doctors are allowed to right off-label prescriptions, but I think that Dr. Klimas even gave some of her patients antiretrovirals even before the finding of XMRV by WPI (and I think they even did good under these drugs).
    I don't like this attitude of "listen to me, I'm wise, you're stupid, I want to help you not to make the mistake you are making". As I said: People here are far away from being stupid. They have a right to choose - and different people make different choices.
  18. determined

    determined Senior Member

    USA: Deep South
    Wow, I had to really try to remember my log in information to reply to this, but I really wanted to say that I have been thinking along the same lines as you, ecoclimber.

    I am eagerly awaiting replication studies, like everyone here. For the most part, I've enjoyed the intellectual level of discussion on this forum. But I haven't been happy with the tendency to attack the motives of people who are simply trying to find the truth. Science is a process, and a time-consuming one at that.
  19. Completly agree, there is however no evidence whatsoever that any doctor is giving a patient non approved FDA off label HIV drugs to patients without HIV. Typing on an internet forum anonymously ''I am taking Antiretrovirals'', means absolutely nothing. They are words, and there is no evidence the words link to any basis of fact - precisely due to the reasons you list above. It would be impossible in the real word for a 'CFS' patient to obtain HIV medications, unless clandestinely. Even if patients did, individuals actions have nothing to do with this forum. No where on this forum is the site owner endorsing any dangerous behaviour - infact, it's the reverse. Why do you think this forum has sub-sections on mental health, supplements etc? To increase chances of a better quality of life. Free speech is perfectly legal where this forum is hosted, and we are allowed to 'debate' science as we do - because science is not an event, it's a process of fine tuning, and never complete. That is the beauty of science.

    Any virtual scenario of a 'CFS' patient allegedly obtaining HIV medications through non official channels, has nothing to do with the CFS community, both virtual and real, and especially not this forum. (Claims to the contrary), thus remain fictional until proven otherwise.

    XMRV infects T& B Cell function - CFS affects T & B Cell function
    MULV class virus is the only virus to infect Mitochondria - CFS patients have mitochondrial dysfunction. XMRV is an MULV class virus.
    Mitochondrial disease symptoms: Shortness of Breath/Chest Pain/Cognitive Dysfunction - CFS all has same symptoms.
    Retroviruses cause Inflammatory responses - CFS patients have very much increased inflammation (Oxidative Stress/Cytokines)
    Retroviruses cause neuro inflammation - CFS patients have increased neuro inflammation and increased choline in the brain (only found in brain damage).
    XMRV is easily capable of damaging bones - CFS patients report premature osteporosis, even in males in their twenties.
    Retroviruses cause Cancer - CFS patients have increased rates of rare cancers
    Retroviruses cause immune suppression 1 - CFS patients have NKC depletion worse than HIV patients.
    Retroviruses cause immune suppression 2 - CFS patients have RNASE-L Anti Viral pathway depletion with low molecular weight enzyme.
    XMRV can turn genes on and off - CFS patients have evidence of 88 genes being turned on/off (Dr Kerr) and gene alterations post exercise (Light et al).
    XMRV affects Red Blood Cells 1 - CFS patients have up to 30% less blood volume, reduced RBC mass
    XMRV affects Red Blood Cells 2 - CFS patients have Red Blood Cell 'morphology' changes detected by Dr Les Simpson (New Zealand).
    XMRV is easily capable of causing CNS dysfunction - CFS patients report a universal incidence of Orthostatic Intolerance & high incidence of Dysautonomia & POTS
    XMRV 'uses' cholesterol - CFS patients report high incidence of increased cholesterol. (Childhood twins with Cholesterol causing Alzheimer's have tested positive for XMRV).
    XMRV 'uses' Androgens (via NF-Kappa B) - CFS patients report onset of CFS in vast numbers in adolescence when androgens significantly rise.
    XMRV uses a female sex hormone - CFS patients are predominantly female
    Retroviruses impair oxygen transport - CFS patients have impaired oxygen transport.
    Retroviruses, (such as HIV) cause 'Crimson Crescents' in the throat - CFS patients have 'Crimson Crescents' in the throat.
    Retroviruses, (such as HIV) cause 'AIDS dementia', lowering of IQ - CFS patients report mental confusion, lowered IQ scores (neuropsychometry) Brain 'Grey Matter Shrinkage'.
    XMRV is an infectious retrovirus in cell culture - There are cases of person to person blood transfusion of CFS both in Belgium and America. People thus 'caught' CFS via blood.

    XMRV is found in 98% of patients with well established CFS using 4 detection methods - This means? ;)
    XMRV is found in 80.8% of Dr Cheney's patients with well establised CFS - This means ? ;) (using the first 'culture' test available). Sensitivity for XMRV detection will increase.
    XMRV is found in 2-4% of the healthy population in 3 countries (America, Germany, Japan). Yet found in 98% of patients with well defined CFS using 4 methods to detect XMRV.

    This could be seen as a somewhat excessive response?

    Using this logic, science cannot happen and should be outlawed today. All scientific evidence requires an initial hypotheses and theory in order to be tested. It is thus high responsible (not irresponsible) to further science by exchanging intellectual thought on scientific matters, such as XMRV.

    This forum and it's members regularly donate money for research and indeed are one of the biggest 'virtual' community basis of CFS patients in the world using an English language forum. To remain silent (for example on poor Science presented by Wessely & McClure) would add to the atmosphere of confusion and controversy. Instead forum members excellently piece by piece, helped to de-bunk poor science.

    This is a very challenging comment, and could be construed in many different ways, mostly all in the negative towards your own concept of fairness and linking fairness to desperately sick people being told by you NOT to debate science in a highly competent, friendly and logical manner. All of which this forum excels at, to the extent Cort Johnson (Site Owner) was granted an interview with Dr Mikovits herself.

    Rather than suggesting CFS patients 'wait' for science to catch up (by not speculating on the causes of CFS linking to XMRV) it is for science to disprove the findings of the WPI. As it stands, no one has disproved the finding by undertaking a replication study, and thus the Mikovits et al 'SCIENCE' paper of 2009 on XMRV being found in high numbers of CFS remains as preliminary scientific fact.

    What is very important to understand is the WPI never said XMRV causes CFS. They said XMRV is found in a high number of persons with CFS. For these people - XMRV causes CFS. The WPI have stated this fact in writing, and have also said (through Judy Mikovits) that XMRV will never be found in all people with cfs - due to the heterogenous nature of the condition. When CFS is well defined, then yes, the numbers are as high as 80-98%, yet these are people with evidence of neuro immune disease, who have the label 'CFS'. Again, I repeat - for these people, XMRV causes CFS. Why? Because their neuro immune disease (caused by XMRV) was given the label - CFS.

    For these people, there is no crime in discussing, coming to terms with and trying to get medical research information on XMRV and the links to their disease label, CFS. Indeed, it is a very healthy and praiseworthy behaviour - when government health agencies remain confused or censored in trying to protect the public and when these people (forum members) are often bed bound. This forum is not a government health agency, makes no claims to be one, and will never be one. We are a collective of people with various illnesses - who have all be told we have CFS, as there is no diagnostic test. XMRV is the beginning for some of us, to be able to understand why - we are ill.

    Linking XMRV to CFS is thus critical and vital for many extremely ill people to survive and not die from their label of 'CFS' and to suggest we do otherwise is a losing battle I'm afraid.

    I myself have found this forum a unique source of: up to the minute, ground breaking, scientific medical research. I would thoroughly recommend anyone interested in the science of disease and CFS to use this forum and post more messages about the new human retrovirus XMRV and it's links to the debilitating and life limiting condition CFS.

    Thank you.
  20. Cort

    Cort Phoenix Rising Founder

    Good point, dysautonomia about the fact that WPI has officially never said XMRV causes CFS. I think one thing ecoclimber is saying that that fact is not alway readily absorbed. When you look at our little polls you see, as I remember, about half the people taking poll are not testing positive for XMRV. Yes, the antibody tests are suupposed to be more sensitve but the ratio there (I know its still early) is about 50%. I don't think we're going to nearly see the 90 95% positive rate that was suggested early on. Ecoclimber is apparently very ill (2 activity level) and meets the strictest standards for CFS - yet tested negative on two tests.

    As regards cause - we'll have to wait and see. Certainly there's a good reason to guess that it might cause CFS in those infected because it is, after all, a retrovirus - and as we know, they're not generally floating around the population - but we'll need to see how many people who have other disease have XMRV as well; that'll be a key, key statistic. I think its pretty clear that researchers are looking across the board at XMRV and we should know just what diseases its found in and in what amounts at some point.

    If XMRV is much more commonly found in CFS than in other disorders and the general population then it's either a passenger virus or THE BIG ONE. At that point physicians will hopefully be able to start treatment trials; if they can get rid of XMRV and the patient becomes well - then you'll know for sure you've got the BIG ONE :) ; if they can get rid of it and the patient doesn't then it's not the whole picture.

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