by Johan on August 20, 2010

Yesterday ProHealth published the news about a possible name change for XMRV, the retrovirus linked to ME/CFS and prostate cancer. The new name would be Human Gamma Retro Virus (HGRV) and the associated illness Human Gamma Retrovirus Associated Disease (HGRAD).  I do not rule out this is just a teaser to see how the patients respond before the name change is officially announced. Well, glad to be of service; this is my response.

The Name of The Beast

Almost a year ago a paper in Science by the Whittemore Peterson Institute for Neuro Immune Disease (WPI) announced that it had found a possible suspect for ME/CFS. A retrovirus nonetheless, previously only found in mice, hence the name: XMRVXenotropic Murine leukemia virus-Related Virus.
Without any studies confirming their findings yet (the Dr. Harvey Alter NIH/FDA paper can be published any moment now) they now propose to change the name to HGRVHuman Gamma Retro Virus. As it is a virus found in humans the change from murine (M) to human (H) makes sense. However,  XMRV is only one member of the genus of gammaretroviruses (family retroviridae). What if more gammaretroviruses are implicated in human diseases? Will we have to start numbering them? HGRV-1, HGRV-2, …

What disease?

The WPI paper in Science only mentioned a possible causal link between XMRV and ME/CFS. Thus far the negative studies outweigh the positive one. Yet it didn’t stop them from picking a name for the disease: XANDX Associated Neuro-immune Disease. It never really caught on and it will be renamed to match the new name for the retrovirus: HGRADHuman Gamma Retrovirus Associated Disease.

Suppose the long awaited Dr. Harvey Alter NIH/FDA paper in the journal PNAS – Proceedings of the National Academy of Sciences (to be published next week?) confirms the findings by WPI (as rumored). The negative studies would still outnumber the positive ones. It would however stimulate more research into XMRV, the possible link with ME/CFS and other diseases, and the reasons for the different outcomes. A lot of people probably think they know the reason for the negative studies: sloppy or biased research, likely, but this needs to be proven as well. This is probably a process which will require several months to a year.

Suppose the extra research, sparked by a positive Dr. Harvey Alter NIH/FDA paper in PNAS, does find a link between the retrovirus, XMRV or HGRV, and ME/CFS. It still needs to be proven that the retrovirus causes ME/CFS. As several scientists, among whom Dr. Ila Singh, already pointed out this is a process that could take years.
There are already ME/CFS patients and doctors who are experimenting with HIV antiretroviral drugs, artesunate, and GcMAF to treat XMRV. If they get better, does this prove the causal link? Does it? The answer is NO. There are other explanations possible: placebo effect, a cycle of remission and relapse, the antiretroviral medication might suppress other infections, and GcMAF might give the immune system a boost to overcome infections in general. This kind of research takes time.
It probably won’t stop patients and doctors experimenting. It probably wouldn’t stop me if there is at least some research backing up those claims.

Suppose it gets proven that the retrovirus, XMRV or HGRV, causes one or more diseases. Let’s not forget that this isn’t just about ME/CFS, the retrovirus is also implicated in prostate cancer, FM, MS, and autism. Will all these diseases have to be renamed to HGRAD?


I don’t want spin, PR, marketing or semantics. Let’s establish the facts first. I want science and I want it now!

GRIME: Gamma Retrovirus Induced ME

If you want to read another post on the name change to HGRV and HGRAD, I recommend What’s in a Name? XMRV to Become HGRV? on Living with Chronic Fatigue Syndrome.

{ 1 comment… read it below or add one }

Johan August 21, 2010 at 6:28 pm

An update:
Apparently Andrea Whittemore posted a message on FaceBook yesterday that info on a name change is just speculation and rumor.


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