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"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ahimsa, Jun 3, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Here is the CAA's XMRV study by the way; gathering samples from several noted physicians, strict enrollment criteria, etc. Its fine to be critical - fine! - but organization that is simply devoted to bash XMRV or is stonewalling XMRV research would not do this. They're putting some money down on this - and they don't have much.

    You have a big pharmaceutical company involved -what more could you want? Just trying to provide some balance here.

    Everybody gains with XMRV - nobody loses - the CAA doesn't lose; what do they have to lose by CFS finally gaining legitimacy? Its all gain....
     
  2. jace

    jace Off the fence

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    We are not alone - revisited and revised

    RNA viruses exist inserted into our DNA. That fact is well known. We also have a symbiotic relationship with certain bacteria and parasites. Again this is well known.

    Ecosystem in this context has no meaning. The correct explanation would be that our responses are epigenetic in a nature controlled by gene regulation. What she says is essentially all a metaphor treated as fact. About 8% of our genome is made up of endogenous retroviruses, this is what gives us our ability to react quickly to environmental stimuli and maintain internal control of body systems otherwise known as homeostasis. All endogenous retroviruses were once exogenous and all are gene manipulators

    There is no evidence that chronic diseases are caused by infectious agents within. There is some evidence that hervs may cause disease, but by definition they are not infectious. Healthy metabolism determines the composition of the gut flora. Infectious agents only produce short term immune responses unless they integrate within the genome or attack the immune system itself. Oncoviruses inserted into the genome can cause cancer. The role of latent viruses in causing regulatory changes within the immune system is well recognized; Epstein barr is an example.

    Note that what began as a controversial finding. Dr Vernon certainly thought so and contributed much of the controversy herself. Also note that independent confirmation and validation must be made. Who would be independent I wonder? Why confirmation and validation? It sounds that Dr Vernon would not be happy with confirmation unless that study was validated by independent sources. That would take us back quite nicely into the field of politically motivated studies, would it not!

    In objective terms the human genome obviously exists. The term metagenome is a metaphor. EBV exists as a latent virus within our DNA. It is sometimes reactivated to give recurring symptoms, at other times activation produces no infections. In some people, sadly, the virus gives rise to cancer called Burckits Lymphoma. XMRV was actually discovered inserted within the genome. Dr Vernon is stealthily using the argument that if XMRV is causative why doesnt everyone with the virus get ME. What she does not say is that every other known MLV virus is a gene manipulator. The other retroviruses which exist within our metagenome are also gene manipulators. In fact they produced our master gene regulatory systems.

    The fact that acute pathogenic infections activate latent viruses also seems to have escaped her attention. Although the presence of other pathogens have been reported in ME patients they have been ruled out as being causative. Dr Vernon recently co-authored a paper showing that the cytokine pattern in ME patients is abnormal and not what you would get in response to an infectious agent. It also showed that this cytokine pattern seemed to implicate a latent virus. Given that other latent viruses dont cause ME what does that leave us with? Quite a mystery isnt it!!

    I have merely reconstructed Dr Vernons argument. Sounds totally different does it not? The idea that research should question the support of other viruses as causes of ME is another smokescreen. That has already been done and the answer is negative. A great number of people with inserted oncoviruses get cancer. All known gammaretroviruses are oncogenic. As XMRV inserts into CpG islands in gene promoter regions the virus is capable of regulating a vast array of genes.

    While 4% of the population are without overt symptoms of a neuro immune endocrine disease the question must surely be what other health issues do they have now or likely to develop in the future? The other question is why do virtually 100% of patients with the neuroimmune endocrine symptom patterns called ME/cfs have XMRV both in the latent and replicative phase? That alone belies Dr Vernons theory that XMRV is a stable part of our metagenome. She must surely know that mitosis activates the replication of a retrovirus and hence XMRV, or any other retrovirus, being a stable part of our genome is impossible.

    She also forgets to mention that retroviruses are unique as being the only viruses which spend the majority of their life cycle actually integrated within our genes. No other class of viruses do this. No other class of virus is capable of infecting every type of cell in the human body although they do have a preference for cells of the neuroimmune system

    posted by permission from gerwyn
     
  3. lansbergen

    lansbergen Senior Member

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    "You can see that our bodies are actually complex ecosystems influenced by physical and biological factors from inside and out. As with any ecosystem, a balance of these factors is required to maintain good health."

    Very well put in a nutshell.
     
  4. natasa778

    natasa778 Senior Member

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    olala, now we are talking!

    thank you gerwyn and jace for putting my thoughts into words :Retro smile:
     
  5. jspotila

    jspotila Senior Member

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    I respect your opinions, parvofighter, and your right to express those opinions. But I respectfully disagree. The Association did not "drop the ball on XMRV." Dr. Vernon has not been trashing WPI's work.

    We have invested substantial resources into XMRV (research and otherwise) since the day we found out about the Lombardi paper. Perhaps I am misunderstanding your comment that the Association "directly allowed XMRV research and funding to be delayed." As I understand this comment, you believe that the Association has power over NIH and CDC funding decisions. I sincerely wish that this was true. We would see hundreds of millions of dollars invested in CFS research every year if the Association had the ability to control the federal purse strings.

    You asked the Association to acknowledge mistakes that were made last fall. We took responsibility for that last November in an open letter to the CFS community. No organization can hit the right notes each and every time, but the Association strives to do so.

    Amen. On this point, we are in complete agreement.

    I am not suggesting that XMRV is not the cause for ME/CFS. I am saying that we do not KNOW whether or not it is the cause. Dr. Silverman made the same point in his Nature Review article - that causality has not been determined, but is certainly a possibility.

    You are absolutely correct that limited resources must be invested carefully and strategically. Making those strategic choices is a difficult and challenging process. Reasonable minds can and do differ on what types of research or areas of inquiry are most important. The Association is directly involved in XMRV research, but has also chosen to maintain lines of inquiry into other aspects of CFS.
     
  6. cfs since 1998

    cfs since 1998 *****

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    What? Dr. Vernon is not a forum member who needs to be protected from offensive and rude posts, she is a public figure who is in a major leadership role at one of, if not the, largest CFS advocacy organizations in the world. Criticism of her and her actions should not be censored based on the ridiculous abstract ideas that posts regarding her are "inflammatory" and use "really heated language." Saying that you are simply trying to moderate offensive/inflammatory posts is a false pretense.
     
  7. V99

    V99 *****

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    Not being from the USA and having less knowledge about the CFIDS association, all I can say is that, it seemed a little strange to go from Vernon saying the first two negative papers were not up to scratch, to saying the 3rd negative study made the Science paper look wobbly. Was it the study being printed in the BMJ that altered her thinking? because it cannot have been method or criteria.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Whatever they are they are the rules of the Forum. its pretty obvious that nobody is stopping a critique of the CAA or Dr. Vernon. Rude and offensive language posts - as you yourself put it - are another story. We can find a way to discuss these issues without that.

    I would note that we tread quite lightly here. In my 'Forum Manual" I picked up at the bookstore the author - who does this for a living - does not allow members to go so far as to post Micro$oft instead of Microsoft because he considers that inflammatory. (Imagine if we had those standards).

    Most of Parvo's very heated, to say the least, piece on the CAA was fine. It was posting in enlarged, bolded, red print that the CAA has "stonewalled XMRV research causing grievous insult" that was the problem. That came in response to another poster but was not an attempt to refute the post, it simply racheted the heat up.

    This isn't about Dr. Vernon at all. We wouldn't allow someone to come on the Forums and do something like that to the WPI either.
     
  9. Cort

    Cort Phoenix Rising Founder

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    I assume that it was an accumulation of things; She didn't say the studies were bad - she said they weren't enough. The studies were all different - you could say that the first study had X problem, the second study had Y problem, the third had Z problem......after awhile the idea that each study somehow managed to have just the right problem to not find XMRV statistically gets a bit tenous. Now we've had 6 negative studies I think - they are all very different studies taking different shots at XMRV- are they all making different errors? Very possibly XMRV is just a very difficult little bugger to find. That will come out over time...there's still lots of studies to come. Anyway, I really don't know what her thoughts were - but that was my idea.
     
  10. V99

    V99 *****

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    This is not in relation to Vernon, but it's funny how scientists, and human being, always seem to forget how difficult and surprising discoveries can be.

    It is fair enough to say that multiple negative studies will give cause to question the Science paper, but 3 CFS papers is not many, and really should have no effect on the funding the WPI was promised. As for Vernon, again I was taken aback by her change of tone. She went from giving a list of methodological differences, to saying
    However, if the previous reasons given were of any value, they would still have applied.
     
  11. Dr. Yes

    Dr. Yes Shame on You

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    Offensive to whom - the CAA? Its members? Do you not see a glaring conflict of interest here?

    Cort, I find your opinion here extremely disturbing. Parvo was merely stating his/her interpretation of the CAA's actions. If you or others find that interpretation personally offensive - frankly, that is your problem. The CAA and Dr. Vernon are a public organization and figure, respectively. They are also supposed to be our advocates - as such we have not only every right but the responsibility to criticize them WITHOUT CENSORSHIP.

    Far more inflammatory language has been directed at the Dutch and Imperial College researchers, and particularly at Wessely. I have never seen you criticize the comments about Wessely... is he now protected by the new forum policy? The reason he can be subjected to such criticism is not that we all agree we don't like him, but that we all agree that doctors, researchers and organizations have NO immunity from the heated criticism that we do not allow for use on forum members. It doesn't matter if the target is Simon Wessely or Suzanne Vernon.

    First of all, you absolutely should, as there was nothing Parvo said that s/he did not substantiate either in that post or later, and I would hope this forum allows honest criticism, no matter how strong, of ANY institution and ESPECIALLY any advocacy group involved in our disease. Second of all, you have not followed, at least in the past, the principle you stated. A new member, as you know, started a thread a while back to defame the Whittemores and the WPI. The only source provided for this troll's claims was a Nevada-based right-wing talk radio blog. Despite immense protest by forum members about this obvious trolling (which included calling all who supported the WPI "sheeple"), the thread was not only left open but actively encouraged by one of the moderators and, if I remember correctly, by you. It was closed later as the criticism grew more intense.

    Contrast your response to that situation to your response now to a carefully articulated statement by Parvo, a respected member. In light of this and my comments above about criticism of Wessely, I have to wonder if it is the target which disturbs you more than the language.

    That is a faulty argument. To use another analogy, imagining that we lived in Myanmar, or in Cold War East Germany, doesn't make any limitations of civil rights in the United States more acceptable.

    As for Parvo's statement itself, I took it to mean that many statements by Vernon and the CAA, by publicly expressing dissatisfaction with the WPI, by submitting unbalanced evaluations of XMRV research that were overly critical of the Science studies and far too uncritical of the European ones, ("Playing a Weak Hand Well"), etc., had the effect of reinforcing the efforts to stonewall XMRV research that have clearly been afoot. Whether this was intentional or unintentional was irrelevant to Parvo's basic argument, as I understood it. But as I said, even if Parvo meant that it was intentional, that is a fair interpretation and a matter of opinion. It has nothing to do with the forum etiquette, which applies to how comments impact fellow members, and cannot possibly apply to institutions that are NOT associated with this forum.

    Parvo was actually offering the CAA a chance to improve its image in the ME/CFS community. To censor Parvo for stating what many feel would have the opposite effect on the CAA's image. I don't know why you and others have been having a hard time understanding that.

    (ETA - In case you were wondering, my new profile line has nothing to do with any of this. Added it last night!)
     
  12. V99

    V99 *****

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    Dr. Yes - what a beautiful nun you have become. Can I say that? Do you say that to a nun? Do I actually want to say that? Oh, I'm so confused.
     
  13. Dr. Yes

    Dr. Yes Shame on You

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    Shame on You.
     
  14. V99

    V99 *****

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    :ashamed::ashamed::ashamed:
     
  15. V99

    V99 *****

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    But can you do this
    [video=youtube;2Hua7m6wQuw]http://www.youtube.com/watch?v=2Hua7m6wQuw[/video]
     
  16. cfs since 1998

    cfs since 1998 *****

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    That sentence had a "not" in it. I said that is NOT the situation here.

    I recommend a refund.
     
  17. Robyn

    Robyn *****

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    This was in the Wiki page on CFIDS of America http://en.wikipedia.org/wiki/Chronic_Fatigue_Immune_Dysfunction_Syndrome_Association_of_America (see belownext paragraph) . I'm not sure how this works or who can put this information in, but does this mean CFIDS receives 6 million from the CDC? I've asked that question of the CDC and am waiting for a response. I'm interested in knowing if there is a criteria is for receiving these funds. I just don't know the history on this. Does anyone else have the answer. Did they have to apply for funding or what?

    The Chronic Fatigue Immune Dysfunction Syndrome Association of America is an association dedicated to ending chronic fatigue syndrome (CFS). Members prefer the term chronic fatigue immune dysfunction syndrome over CFS, or myalgic encephalomyelitis, which are more common in the medical community. The CFIDS Association of America is the advocacy group in charge of the $6 million C.D.C.-sponsored public awareness campaign in the United States about the illness.[1]
     
  18. V99

    V99 *****

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    Anyone can alter wikipedia entries, but whether the changes remain depends on who else is interested in the content.

    It will be interesting to see how the CFIDS responds.
     
  19. Cort

    Cort Phoenix Rising Founder

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    I agree but there are limits to what we can do. However, we do NOT all agree that doctors, researchers and organizations have NO immunity from the heated criticism that we do not allow for use on forum members. That's not true at all. We want the debate to be respectful in all cases. With Wessely I recognize that's clearly an impossibility.
    That's not accurate; I showed that Parvo's take on the Kuppeveld cohort turned out to be incorrect - the WPI found XMRV in that cohort. Nor has she demonstrated any way the CAA could possibly 'stonewall research" - which she put in bright, red, bold letters. I don't see any substantiation. I see a very heated comment that was not based on fact.

    Of course this forum allows honest criticism of any institution and any advocacy group - take a look around. We're asking forum members not to engage in overly inflammatory language. Yes, I support the work the CAA is doing - I think they have a good chance at making a real difference in this disease but I don't think its the target that's the problem - and I know I have to be careful with that - I think that particular statement went too far. Look at that first long post that was extremely critical of the CAA, I disagreed with virtually everything in it yet it was uncommented. Before you accuse me of 'censorship' or of not allowing the debate to continue, please consider that.

    I am a little clueless about the right wing radio talk claim. The person was allowed to continue for a time because he/she posted actual documents that Forum members could use to ascertain whether the facts were correct. The talk was pretty quickly closed.

    I am still puzzled at this. I have, what 25 listed studies on XMRV that have gone on over the last 6 months. That's more study on XMRV in six months than CFS has gotten in years. We have everyone from the National Cancer Institute to the CDC to ARUP to Abbot to Stein to Montoya to the CAA to Silverman to Joliceur to WPI.....I could go on and on. Honestly where is this muzzling of XMRV research? We just had THREE new studies announced in the last week......the very group Parvo accused a group of stonewalling XMRV research is actually one of the only Support Groups putting money towards XMRV research. If someones muzzling CFS research they're not doing a very good job.

    Are you saying that XMRV is not getting research funding?
     
  20. John Leslie

    John Leslie

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    Can anyone tell me what connection Cooperative Diagnostics has in this XMRV debate? I see that they are providing samples for some study in this post, but I read that they recently shut down their testing because they couldn't find XMRV. Do they have a relationship with the CAA and does anyone know if they were doing their own lab work. I know I read that some lab in Kansas was going to do their work, but I can't find it. Thanks
     

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