News from WPI symposium: Name change to be proposed for XMRV

[V99]

It also makes pretty good sense to me that ticks could pass XMRV (HGRV) on to another person.

Ticks may not be passing on XMRV. It is more likely the patient already had it.

 

[leela]

I like the idea of simply implying the humangammaretrovirus with just the H, (like we do with "PWC")
so the disease could be called HAD--putting it already in the past!
:victory:
I can imagine the conversations now:
"I have HAD."
"Have had what?"
"HAD."
"Had what?! What have you had?!"
etc....

 

[Jenny]

In Dr. B's 2008 treatment guidelines he says not to exercise until you are well into the recovery stage of chronic Lyme disease treatment. Perhaps the same could be said for CFS recovery?

Could be SunnyGal - he says to progressively increase exercise as symptoms decrease.

Jenny

 

[V99]

In a recent Oslers Web blog post, Johnson quoted Mikovits, "
"This the worst public health crisis in our history and the government has no right to stop [this paper's] publication,"

My thoughts on a dark night are that we are being rocketed from marginality and mockery to a place where we might be feared and marginalized again; before we could be ignored or joked about.

They have to get on the stick with determining exactly how the illness is transmitted because until they do, and it is convincing, we are going to be targets. You can't claim cluster cases and then deny the virus isn't transmissable. We all know that it is.

I agree entirely.

 

[pictureofhealth]

It also makes pretty good sense to me that ticks could pass XMRV (HGRV) on to another person.

You might want to add mosquitoes, fleas and mites to that list - anything minute that bites - and can be transferred from wildlife, pets and to and from humans. Though I think the mosquitoe 'option' would be the scariest as they can fly some distance after biting - so this retrovirus could have the potential to become air bourne after all ... oops

 

[urbantravels]

I like the idea of simply implying the humangammaretrovirus with just the H, (like we do with "PWC")
so the disease could be called HAD--putting it already in the past!
:victory:
I can imagine the conversations now:
"I have HAD."
"Have had what?"
"HAD."
"Had what?! What have you had?!"
etc....

Excellent!!!!!!!

 

[Stone]

I found an interesting reference to Lyme made by Dr. Mikovits back in April:

Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A
Attachment to IACFS/ME Newsletter
Volume 3, Issue 1 • April 2010

Questions and Answer Session with:
Dr. Judy Mikovits: Principal Investigator, Whittemore-Peterson Institute.


Q; With the known % of CFS patients positive for Mycoplasma species (~60% in multiple studies), Chlamydia
pneumoniae (~10% in multiple studies), HHV-6 (~30% in some studies) and other infections, is there any
concordance with XMRV positivity?

A: We have only done those analyses on the 101 in the original study, HHV6A was 10%, EBV ~14% and
nothing else more than 10%. We are working with several groups at Lyme and those numbers may approach
30%-40 of those tested.

 

[urbantravels]

OK, now that we've all worked ourselves into a lather, I see on careful reading that this is a proposed name change. Presumably, proposed by this particular "working group."

Who actually gets to decide these things?

 

[Daisymay]

from someone on another list, HGRV= Heavy Goods Recovery Vehicle !

 

[Dreambirdie]

:victory:
I can imagine the conversations now:
"I have HAD."
"Have had what?"
"HAD."
"Had what?! What have you had?!"

:Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue:

Whose on first!

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[LJS]

I graduated from H

 

[George]

I like the idea of simply implying the humangammaretrovirus with just the H, (like we do with "PWC")
so the disease could be called HAD--putting it already in the past!
:victory:
I can imagine the conversations now:
"I have HAD."
"Have had what?"
"HAD."
"Had what?! What have you had?!"
etc....

ROFLMTO! I have to say that no matter how you slice it the whole H thing just is toooo funny.

 

[Dr. Yes]

Rich can correct me if I'm wrong, but I would assume HGRAD is the proposed umbrella term for any diseases associated with HGRV. That could potentially include more than ME/CFS. There is no mention of 'neuroimmune', or 'neurological', as in the earlier proposed umbrella term XAND. Thus this new term is even less specific to ME/CFS; I assume we would need yet another name!

We would, I suppose, come under the sub-umbrella term "HGRAND"... yeah, dumber and dumber...

HGRV is a bit ungainly but at least gets rid of all the "virus related virus" stuff. But as Otis and others pointed out, it creates some difficulty if other human gammaretroviruses are discovered.

Important to note - these scientists alone cannot force a name change of any kind; that would take a larger consensus. Publishing using the new term will create momentum for changing XMRV to HGRV, however, if that's what they want.

 

[George]

Ohhh, that's interesting point, can you expand on it and what does the HGRAND stand for? Please.

 

[urbantravels]

But....Dr. B said this:

The illness caused by this infection is named HGRAD - Human Gamma Retrovirus Associated Disease.

The (definite article) illness (singular).

 

[bullybeef]

Rich can correct me if I'm wrong, but I would assume HGRAD is the proposed umbrella term for any diseases associated with HGRV. That could potentially include more than ME/CFS. There is no mention of 'neuroimmune', or 'neurological', as in the earlier proposed umbrella term XAND. Thus this new term is even less specific to ME/CFS; I assume we would need yet another name!

We would, I suppose, come under the sub-umbrella term "HGRAND"... yeah, dumber and dumber...

HGRV is a bit ungainly but at least gets rid of all the "virus related virus" stuff. But as Otis and others pointed out, it creates some difficulty if other human gammaretroviruses are discovered.

Important to note - these scientists alone cannot force a name change of any kind; that would take a larger consensus. Publishing using the new term will create momentum for changing XMRV to HGRV, however, if that's what they want.

Hi Doc,

How did Reeves and Wessely manage to get their way in regards to changing ME to 'CFS'?

 

[Sam Carter]

Ohhh, that's interesting point, can you expand on it and what does the HGRAND stand for? Please.

Human Gamma Retrovirus Associated Neuro-immune Disease?

 

[V99]

I think that in the USA the CDC didn't realise that they were dealing with a recognised condition. When it was pointed out to them, they decided that everyone was wrong and they in a huff created CFS. (sort of, but much more complicated) They still say it is not ME.

In the UK, out of stupidity, ignorance, and to support their fatigue theory, decided to combine the terms into CF/ME.

Therefore they know it is ME that is the real disease, and CFS is the catch all crapy definition.

 

[Stone]

In a recent Oslers Web blog post, Johnson quoted Mikovits, "
"This the worst public health crisis in our history and the government has no right to stop [this paper's] publication,"

My thoughts on a dark night are that we are being rocketed from marginality and mockery to a place where we might be feared and marginalized again; before we could be ignored or joked about.

They have to get on the stick with determining exactly how the illness is transmitted because until they do, and it is convincing, we are going to be targets. You can't claim cluster cases and then deny the virus isn't transmissable. We all know that it is.

I think about this sometimes, too, and I do worry about being marginalized because people fear contracting the disease. And then I wonder if perhaps people should worry, maybe they should avoid us until we really do know exactly how this thing is transmitted. I'm not 100% sure how or when this (presumed) pathogen entered my body, and I'm sure I'm not alone. I would hate to pass this to another person, but at the same time I would also hate it if no one would let their children play with my grandson if he's HGRV positive, or if no one would want to eat with us. Much worse things happened to people in the early days of HIV. It took a while for people to become educated about how HIV is passed, but for the most part, it's nothing today like it used to be for HIV+ people in society today. Maybe people have evolved somewhat and won't fear casual social contact with us assuming that casual social contact turns out to be safe.

But until we know exactly how this is passed, maybe caution really is called for. On the PR poll about family members who have this disease, the incidence of people whose significant others are sick is pretty low while the incidence of people with "CFS" who have other family members with that diagnosis is amazingly high. There are a lot of ways to explain this, but on the face of it, it's really puzzling, and not at all what you would expect from a retrovirus. You don't see a pattern like this with HIV-AIDS, at least not to my knowledge. We just need answers and we need then soon, because we are faced with some extremely important questions. It's comforting to know that lots of research is in progress or soon to begin. It's comforting to know that we don't have to rely on the CDC for the answers, too! I do think that when the transmission questions are answered, it will turn out to be very interesting indeed!