20 August 2010

XMRV name change: the benefits and detriments.

There is a blog entry dated 29 December 2009, which addresses, very briefly, the names ME, CFS, Post Viral Fatigue, and so  forth.  it is beneficial for people to have a read of that entry, and it's attached links, as a background to this entry.  However, this entry discusses the proposed change from XMRV to HGRV, and HGRAD.

For the first time on this blog, apart from the blog entry about my personal story (dated 28 December, 2009), the  information discussed will be somewhat more subjective than usual, because of the nature of the discussion, and my own  interest and understanding of it.  What is presented here, therefore, are my own opinions, and must be interpreted as only  that.  People will not always agree with each others opinions and views, no more so mine than anyone elses, but I do ask that  people take time to read and understand the rationale behind such opinions, and use that to further develop their own ideas and values, whether in agreement or disagreement.

On 19 August 2010, a notice began circulating on ME/CFS websites and blogs from Rich Van Konynenburg, PhD, on behalf of Dr. Burrascano, MD, who attended the first official XMRV symposium of the Whittemore-Peterson Institute (Prohealth, 2010). The notice states firstly that a working group has been established to regularly meet and appraise the developments around what we are currently referring to as XMRV and it's association with ME/CFS.  The notice goes on to report that a new name has been proposed for XMRV and it's association with ME/CFS, and this announcement is expected to be made at the NIH retroviral conference this September Institute (Prohealth, 2010).  Reflecting on this, provides a good opportunity to reflect on the XMRV label, how it has been used, and  the benefits, detriments of changing this.

XMRV or Xenotrophic Murine virus-Related Virus, has been been used in ME/CFS circles since the news broke in October 2009 that a possible link had been identified between it and ME/CFS.  Before that, it had been identified in 2006 as potentially involved with both hereditary and spontaneous prostate cancer (Schlaberg R., et al. 2009). The name Xenotrophic Murine virus-Related Virus tells us that this virus that the WPI connected with ME/CFS in October 2009 is related to a retrovirus that originates from mice.  It does not cause disease in it's original hosts (the mice), but once it is transferred to another species, say humans, and inserted into their DNA genome, it can code for a provirus, which causes either active or latent infection (Belshaw, R., et al. 2004).  For further information on this replication process, have a look at the entry dated 28 December, 2009).

The new name proposed for what we are currently calling XMRV is Human Gamma Retrovirus (HGRV), and for the consequential symptoms and disease pathology, Human Gamma Retrovirus Associated Disease (HDRAD).  This would suggest that the signs and symptoms people experience as a result of the infection, would be referred to as HGRAD.  This would indicate, assuming that XMRV, or HGRV is causative to ME/CFS, that people who currently have a diagnosis of ME/CFS will therefore have a diagnosis of HGRAD, a disease process associated with the Human Gamma Retrovirus.

There are a number of thoughts and perspectives on this proposed change of name.  Of course,  it hasn't even been one year since the WPI announced their XMRV findings, people with ME/CFS are still getting used to the possible XMRV connection and label.  This disease already has a number of different names attached to it, and to have yet another name added to the list, is going to cause confusion.  Especially so because people have already started using the term XMRV for educational and promotional purposes.  Another reason is that this is yet another opportunity for the CDC and the Wessley subscribers to to continue to deny that ME/CFS is pathophysiological disease process, and promote their CBT and GET therapies.

However, and this next part is my own opinion, feel free to challenge it.  The label XMRV never differentiated between the infections that it had potentially been linked to; prostate cancer and ME/CFS.  It fails to acknowledge this retrovirus as the first gamma retrovirus known to infect humans, which is the genus that differentiates it from HIV.  In terms of a medically terminological label, HGRV, is a much more accurate informative and accurate label for the retrovirus known currently as XMRV.  Yes, the retrovirus is still related to xenotropic murine virus, but that isn't clinically relevant in the infection process, or treatment of prostate cancer or ME/CFS. 

HGRV highlights that this is a (the first) gamma retrovirus discovered that effects humans, and HGRAD allows the flexibility for it to be used to cover various disease processes caused by the retrovirus; namely prostate cancer and ME/CFS currently.  There will need to be work done in terms of education and promotion that ME/CFS is one and the same as HGRAD for those who test positive for the disease.  As we would for any new name given to the disease.  People must to continue to advocate for acknowledgment from those organizations who have mistreated and misrepresented people with this illness, and ensure that a change of name does not negate it's history of management.  In the meantime, we are still awaiting evidence of whether this retrovirus is causative of, or co-morbid to ME/CFS, evidence which hopefully will come out shortly in the form of a science paper published in the Journal of the Proceedings for the National Academy of Sciences.


References:

Belshaw, R; Pereira V; Katzourakis A; Talbot G; Paces J; Burt A; Tristem M. (). "Long-term reinfection of the human genome by endogenous retroviruses". P Natl Acad Sci USA

Van Konynenburg, R.,  (2010). WPI Symposium News: Propose Name XMRV be Changed to HGRV. Retrieved on 20 August, 2010 from http://www.prohealth.com/library/showarticle.cfm?libid=15543&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

Links:

Prohealth notice from Rich Van Konynenburg 

17 comments:

  1. I would like to stick to the names we are using right now, i.e. :

    - XMRV
    - CFS/ME

    A name change would be very harmful, and may indeed lead to widespread confusion, not only amongst the general public. A name change is also a kind of denial of what researchers of good science have already achieved up till now.

    By the way, I do not like the name XAND either. It sounds as if we are merely talking about "sand" or something. XAND sounds very silly to me.

    If you absolutely want to change the name from CFS/ME to something else, then perhaps the name "XIDS" would be a nice one, because it resembles the word "AIDS". XIDS could be the abbreviation of "XMRV-induced Immune Deficiency Syndrome." CFS/ME is in fact nothing else than another kind of AIDS. CFS/ME is technically also an acquired immune deficiency syndrome, but we cannot call it that way, because AIDS and CFS/ME are not identical twins, so to speak, far from it. The name XIDS would do more justice to the disease CFS/ME, putting it rightly on the same level as AIDS. It is a novel kind of AIDS. Scientists, however, are not yet absolutely sure whether XMRV is causing CFS/ME, or whether it is co-causing it. Therefore XIDS could also be explained as "XMRV-linked Immune Deficiency Syndrome."

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  2. I know many people do disagree with the idea of a name change; I'm definitely in the minority. I guess why I wrote this post was to explore my own thinking. I had many issues with the XMRV label, however, and like Nancy Klimas stated, it is a very unfortunate name to have associated with what we currently call ME/CFS.

    Because science is always changing, all illnesses are at risk of having to change or expand their labels to reflect accurately what is involved in, caused by or a result from disease pathology. I am noticing alot of people are interested in seeing a name which reflects the distant relationship with AIDS, or more accurately, the HIV human retrovirus, and, to me at least, HGRV successfully achieves this, whilst differentiating between the virus genus; HIV is a lentivirus, whereas what we currently call XMRV is a gammaretrovirus.

    Personally, for me, CFIDS is a name that fails to inform us accurately of the disease process. I know many disease labels are named after people, etc, so again this reflects my own preference, however to me, chronic fatigue is not the disease process, it is a symptom of a deeper disease proces, involving neurological as well as immune systems, rather than just immune. But again, that is just my preference, and is neither here nor there, really.

    I think the other thing to consider is that XMRV wasn't specifically given to or ever officially used to define ME/CFS (except in individual cases who tested positive for the disease) - it just so happened that people with ME/CFS tested positive for a predefined retrovirus that was previously implicated in prostate cancer and that never reflected the disease we know of as ME/CFS. The label HGRAD, Human Gamma Retrovirus Associated Disease, automatically refers to any pathological disease process attributed to the retrovirus, be it prostate cancers, lymphomas, ME/CFS, or something we have yet to identify.

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  3. CFS/ME (or XIDS, if you like) may be caused by three causative agents :

    (1) Firstly : XMRV => you may find this in 3,7% up till 7% of the general population

    (2) Secondly : HHV-6A => HHV-6 Variant A (not HHV-6 Variant B) => you may only find this variant in less than 1% of the general population, but in more than 70% of people with AIDS, CFS/ME, MS, AUTISM, CANCER

    (3) Thirdly : co-occurrence of widespread genetic mutations such as C282Y and Z-A1AT => you may find this co-occurring genetic make-up in only 0,4 percent of the general population => about 10% of the general public may have either of the two, but only 0,4% may have both. What a co-incidence that also 0,4% of the general public may have CFS/ME !!!

    Conclusion : XMRV is bound to be the main causative agent of CFS/ME, but XMRV will need the destructive help of two other causative agents, i.e. HHV-6A and the co-occurrence of a genetic constellation such as C282Y and Z-A1AT, all acting together in one and the same person.

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  4. This is a well thought out post.

    However, until scientists "prove" that XMRV causes any disease much less CFS, name change ideas are premature to say the least. One paper more or less is not going to accomplish that regardless of the conclusions of the Alter paper or any other. Science doesn't work that way and good science takes time. It may take years - and it will definitely take dozens of studies looking at many many variables.

    For example, read up on how long it took to move beyond association to causation between smoking and lung cancer.

    Then check Hill's Criteria of Causation.

    None of this means there isn't a viral association to ME/CFS, biomedical scientists have already proven this in multiple subsets of patients, but XMRV may just be another player if it even causes disease. And while speculation is fun in the absence of evidence, it is still speculation no matter how well informed or how close to reality any hypothesis may be.

    Like it or not, both scientists and patients are in this for the long haul. Science is rarely an instant winner scratch off ticket.

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  5. I completely agree with this comment, as discussed in the blog entry titled 'The topography of scientific enquiry'.

    Further to this however, is the fact that speculation is the drive for the evolution of knowledge. Provided it is presented as just that, and not unfounded fact.

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  6. The researchers at the WPI (and others)involved with this discovery have recognised that the name XMRV was only ever a "stop gap" name and needs to be changed in order to reflect more closely what it actually is.

    The time to do that is now, when finally, the true nature of this (group of ?)illness(es)begins to unravel and the publicity to drive home the message is unprecedented.

    My observations on the name are as follows.
    1. There is clearly no need or place for the word Xenotropic in the name. Hence any suggestion that X should appear in it is misguided.
    2. Whilst there might be a need for "Human" to preceed all other parts of any chosen name for this retrovirus in the official nomenclature, I don't see the same need in common usage. Nor do I see any need to include it in the name for the disease association.

    3. For clarity (in the use of initials), I think that it helps to see Retroviruses clearly distinguished by the use of both a capital and lower case letter - Rv

    4. Hence, my favoured nomenclature for the pathogen would be HGRv, (which abbreviates to GRv in common use) and the disease classification becomes known as GRvAD or "GRAD"

    5. It is possible that at some point in the future, researchers will discover new strains of the virus that are sufficiently different as to merit individual recognition within the nomenclature.

    6. I suggest that this might result in a need to provide for HGRv1 , 2 etc. or HGRv A, B, C etc in the nomenclature and a sub-type classifications of GRv (X) associated disease

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  7. Human Gamma Retrovirus (HGRV)=> this abbreviation is already existing for something else in the medical world.

    HuLV (Human Leukemia Virus) might have been a far better alternative, but also HuLV is an abbreviation already existing for something else in the medical world.

    Should we call it "HLGRV" then ? Because then at least the word "leukemia" is included as well.

    Human
    Leukemia
    Gamma
    Retro
    Virus

    H-LGRV

    And you could shorten it up to :

    Leukemia
    Gamma
    Retro
    Virus

    LGRV

    "CFS/ME has been linked to H-LGRV" sounds a little bit odd at first, but who knows ... ?

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  8. A new name for XMRV could very well be :
    "Human Leukemia GammaRetroVirus" (H-LGRV).

    Scientific literature is mentioning something similar here :

    [1]

    Murine leukemia gammaretrovirus
    www.springerlink.com/index/02MGN6UM7A0RXEQ0.pdf

    [2]

    murine leukemia gammaretrovirus
    www.ncbi.nlm.nih.gov/pmc/articles/PMC1779362/

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  9. I support the name change that has already begun at WPI: HGRV. This is not only about ME/CFS. This virus has also been found in association with autism, MS and prostate cancer and may well be implicated in other neuroimmune diseases, so the flexibility of HGRV is good to have and the time to change it is now, at the beginning of what will be a lot of new research and new knowledge.

    It will be a great day when the F-word is eliminated from ME/CFS.

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  10. I think any name change now is just spin and a waste of time.
    If the Harvey Alter NIH/FDA paper is indeed positive they are still outnumbered by the negative studies. However, it would provide a necessary boost for more research into XMRV. Even then it could take years before any causal link between XMRV and a disease can be proven. So why change the name of the virus? And as for the name change of the disease ... what disease?
    Apparently Andrea Whittemore posted a message on FB yesterday that info on name change is just speculation and rumor.

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  11. There has been no published replication study whatsoever up till now, but this will change with the publication in September 2010 of the first replication study on the positive link between XMRV and CFS/ME. The so-called earlier negative studies were absolutely no replication studies, so these earlier studies can just as well be neglected, because these studies were clearly not intended to be good science. In other words : these earlier negative studies were just a waste of time, and a waste of money. Any name changes would also be nothing more than a waste of time, and a waste of money.

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  12. If XMRV were a trademark, it would be worth an awesome lot of money. You hear or read the name, and it will stick in your mind forever. A Successful Trademark has to have distinctive character. The more distinctive a trademark, the greater its strength. So if the people at WPI have a business plan with XMRV, they should not alter the distinctive character of the valuable trademark they have got in their hands. The smoother the WPI business is running, the better off patients with CFS/ME will be at the end of the day, because money makes the world go around, and without money nothing will happen. Without money, there will be no research. Without research, there will be no cure. It is just as simple as that ! Also CFS/ME is a fairly good trademark. On the other hand, "CFS" on its own, and the very short "ME" on its own : these two words on their own do not have any distinctive character whatsoever. When you put the two components together, however, you have a trademark that will function appropriately enough. CFS/ME. Can you pronounce it well ? Yes, you can ! Do not use ME/CFS : it simply does not sound well, and therefore it is simply trash ! CFS/ME is the way to go ! And so is XMRV !

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  13. I am sick of hearing about silly name changes. The disease has an established and officially recognised name in Myalgic Encephalomyelitis, which grammatically conveys the seriousness of the disease. CFS was a disparaging name change from the CDC. WPI has made it clear that the diseases they are investigating are Myalgic Encephalomyelitis, Fibromyalgia, Chronic Lyme Disease and Atypical M.S. There is nothing complicated about giving the diseases their established names.

    XMRV is the established scientific name for the virus found in some forms of prostate cancer and very publicly established in regard to ME/CFS. Dr Burrascano throws in a red herring about "endogenous" which is irrelevent, that is why it was correctly named a "xenotropic murine" retrovirus, and as for HGRV, all retroviruses are xenotropic to humans so that doesn't make sense either.

    I shudder to think that Dr Burrascano would be involved in any working group related to XMRV when he doesn't understand the science.. His ideas about HGRV and HGRAD are absurd and he should refrain from telling people they should know and adopt these terrible names when that is not official WPI policy. Whatever is going on in his head to come up with this load of tripe is troubling.

    Most patients would be more than happy to tell him what he can do with his far-fetched proposal. He should know and adopt a more respectful attitude to the WPI scientists who wouldn't dream of changing the official designation of the virus now that they have the attention of the world on this discovery, and who care about the harm caused to patients by the name change to CFS. Stick with the one name that has been officially recognised for over 50 years around the world, its not a name change and it doesn’t require anything more than dropping the disparaging CFS from ME/CFS.

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  14. When you drop the CFS from CFS/ME, then the only thing that you end up with is ME.

    What do you get when you do a Google Search with "ME".

    That´s right.

    Not very much. Or should I say, so much that you do not know where you have got to start.

    Which is why ME does not have any distinctive character.

    "Myalgic Encephalomyelitis" on the other hand has much distinctive character.

    The only problem with "Myalgic Encephalomyelitis" is that nobody knows how to pronounce it.

    And when you do not know how to pronounce a word, you do not use it, because you do not want people making fun of you.

    So where do we end up again.

    With "Chronic Fatigue Syndrome".

    Everybody knows how to pronounce thát.

    Can we bring any changes to that ?

    Yes, we can.

    If perhaps someone with a nice and clear voice would be so nice as to put a perfect sounding audio clip on Youtube. An audio clip with the right pronunciation of "Myalgic Encephalomyelitis".

    You can also find the right pronunciation here, but you have to be a teacher or a student of English, or something like that, just in order to find your way to it :

    http://www.merriam-webster.com/dictionary/myalgic

    http://www.merriam-webster.com/dictionary/encephalomyelitis

    We should have as much video and audio material with the right pronunciation on Youtube as possible.

    That would be the first step in the right direction.

    Perhaps the people from Merriam Webster will be glad to help us out with that ! Who knows ?

    Or perhaps the Lady Doctor who was talking to Doctor Oz in a videoclip. She has such a nice way of talking English. I think it should be called the New King´s English.

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  15. I am totally amazed to have so many comments; so many people reading the blog!

    Thank-you each for you passionate opinions, and the rationale behind them. These will continue to help others to form their own individual opinions, and values.

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  16. Prof. Dr. Kenny De Meirleir is most probably going to propose the following name change for CFS/ME :

    Gamma Retroviral Disease (GRD)

    Today I think that may be a very good idea !

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  17. http://blogs.wsj.com/health/2010/08/26/betting-on-x-as-in-xmrv-with-a-big-ticket-research-center/

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