Sorry forgot to copy the second e mail
Thanks for letting me know there is a buzz about this going on.
I am not part of the WPI (Whittemore Peterson Institute) but I do have an interest in HGRV (formerly known as XMRV) because I strongly believe it is an important contributor to what we know as chronic Lyme. I also believe it is involved in some way with autism and CFIDS, and possibly other so-called “neuroimmune diseases”.
What is needed to further the study of HGRV is to set up clinical trials, because so far, all formal work on this virus is being done in the labs. To accomplish this, we are in the process of setting up a clinical working group, to consist of an alliance between researchers and clinicians. I was invited to join this group- of course, I accepted.
That is the scoop- please feel free to forward this note to any interested parties.
VIP Dx is pleased to announce the availability, beginning Monday, August 23, 2010, of the WPI licensed serology test to detect antibodies to Human Gamma Retroviruses that include XMRV and its variants human MLV-related viruses.
I do not mind what they name the virus. However, I strongly object to changing the name of our illness and so should other patients.
The correct name is M.E.
Thee big problem with our illness has been the name CFS, given by the CDC, which was followed by a 20 year campaign saying CFS is a psychiatric illness. I say, that we should stand up for ourselves, and that if the patients want it called ME, then that is what it should be. What right does yet another doctor have to impose yet another name, without respecting the patient community, or the original naming doctors. Again!
Many patients around the world have spent years campaigning for the name ME. Are we going to trash the efforts of those terribly sick people, some of whom are no longer with us ? What arrogance of any doctor or administrator to do so ?
HGRAD is ok as an umbrella term for all human gamma retrovirus disease if they actually want it, but I suspect it will not last even as an umbrella term.
It is time to consider three things.
First is the international press story that will come soon. That needs a pronounceable and easy to remember name, and ME works perfectly.
Second we have to think of the future legal battles. To ensure that the CDC and the Wessley school get what is coming to them in a court of law, it is necessary to retain the name CFS for a while. In that case we must temporarily use the name ME/CFS and not the other way around as the Wessley people are pitching. Don't let the CDC and Wessley off the hook by changing to yet another new name. Some of you may not want to pursue justice in a court of law, but please do not weaken our case for those of us who will be seeking legal justice.
Third, ME should be remembered for the scandal of the last 20 years, the greatest medical scandal of modern times. ME, being the original name, imposes understanding of that story. A completely new name, not only let's all of the criminals escape justice, but erases the lesson that needs to be recorded in medical history.
It would be good if this forum could decide on this and speak with one voice on behalf of the patients.
Let the researchers name the virus. But we the victims own the name of this illness, and we call it M.E.
The addition of the chronic Lyme disease crew is very interesting, just another disease possibly associated with HGRV's like XMRV? This could be a major missing link for many diseases. We may be witnessing one of the greatest medical discoveries of the early 21st century!
HGRV seems like a fairly accurate description of the virus family, although I prefer the shortened form HGV instead since it more closely approximates its retroviral cousin HIV. As for a better name for CFS I prefer something like the acronym HIDN (Human Immune Dysfunction and Neurological disease) since it hints at the difficulty in tracking down this illness. This is not as broad as HGRAD, however, CFS is a specific disease, and a term like HGRAD may end up referring to many diseases including CFS, aggressive prostate cancer, and who knows what else.
This is starting to make (a little) more sense now, since the publication of the Alter/Lo paper.
These XMRV -ve patients who are severely ill may simply have another/different (but related) MuLV which is not detectable if you are looking specifically and only for XMRV.
It still doesn't explain though why Alter/Lo can detect all these other MuLV's but why not XMRV - which they were looking for.
Perhaps i) regional variations in MLV's really do make all the difference and also ii) mutations must be important - perhaps in as little time as one month to the next.
Or, if we want to take it further and go with the vaccination contamination theory - iii) the differences cropping up are due to different strains of lab mice used for vaccinations in different regions and countries! (ooops).
There sure are a lot of unexplained MLV's about the place contaminating the human race - but the fact is, they are there and they are coming from somewhere!
I dunno - I think we're missing a huge trick here somewhere. Maybe it is co-infections.
We're really still at the beginning here.
Looking forward to what comes out of the September XMRV Conference.
I prefer HGRAD to the 'CFS1' and the 'CFS2' etc that have now appeared in the Alter/Lo paper (as gratifying as it may seem on the surface as it bestows at least 1. recognition of the true existence of the underlying medical condition and also 2. illness subtypes, by a top flight scientist).
I understand the need for the 1, 2 bit, but whatever else happens, the CFS absolutely has to go. Bring on the name change conference.
Hopefully the further credibility accruing to the WPI, since the confirmatory paper, will mean they will have a big say in the eventual name chosen and as others suggest, this may be influenced by findings from further research.
Further serious research is going to happen now - that is a HUGE step forward from where we've been for the last 25 years.