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

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bullybeef

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V99 said:
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.
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But whom backed their decision and sanctioned the change. Everyone else in the medical establishments around the world had to believe their theories to agree to them. Or did they not have a choice?

Seems they have too much power. Who regulates the regulators?
 
dschlindwein

dschlindwein

not according to plan
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Lynn said:
On a video that no one saw : ), I believe that Dr. Ruscetti lamented the name XMRV. He felt that it should have an H in front of it to denote that it is a human retrovirus like HIV and HTLV. My guess is that spurred the name change.

Lynn
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Maybe XMRV is still XMRV--the retrovirus associated with a virulent form of prostate cancer. Maybe what had been thought to be a different strain of XMRV, the strain that causes ME/CFS, is not simply a different strain of that same retrovirus but a different retrovirus which therefore needs its own name. Just speculating.
 
Sunshine

Sunshine

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bullybeef said:
It also makes pretty good sense to me that ticks could pass XMRV (HGRV) on to another person.
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Yes, or maybe the person with Lyme was already harbouring XMRV (HGRV) and the Lyme tick was the activation 'trigger'?

Just as *maybe* puberty (androgen rise) + infectious agent (EBV,CMV, HHV-6) = XMRV play time = ME/CFS.

We all need that immune insult to switch on XMRV basically, however we need to have XRMV anyway, which other than the
Lyme senario of being bitten by a tick, only leaves:

*Contagious - person to person sneezing etc.
*Blood transfusion aqquired
*Vaccine programme by government we all receive as babies/children/teens. (BCG).
* 2nd generation XMRV. Mom was infected and passed it on via act of birth/breast milk, 'born' with XMRV (HGRV) which activates later, e.g via Lyme tick/stress/infectious agents.

I'm interested in BCG contamination myself as something to do with XMRV (HGRV). Too many teenagers getting walloped who then mysteriously get ME/CFS.
Maybe BCG vaccine helps activates XMRV, rather than being contaminated *with* XMRV (HGRV) of which the source remains a mystery.

I read a while back there is something (literally) in a BCG vaccine that is related to XMRV (HGRV). I think it was NF-kappa-B activates via BCG vaccine, and Judy Mikovits mentioned NF-kappa-B is directly involved in XMRV so I thought. Hmm, that's interesting!

Lyme disease or not, if we all have XMRV dormant, we need that trigger to turn it on. Probably many things like Lyme, hard exercise/cortisol/androgens, but still that doesn't explain how we got XMRV (HGRV) in our blood supply in the first place. I wonder if a certain UK psychiatrist employed by the UN and the Army might know?!!!
 
V99

V99

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bullybeef said:
But whom backed their decision and sanctioned the change. Everyone else in the medical establishments around the world had to believe their theories to agree to them. Or did they not have a choice?

Seems they have too much power. Who regulates the regulators?
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Health authorities and Government. They chose to listen to that particular group of scientists for a reason. Money.
 
George

George

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Maybe XMRV is still XMRV--the retrovirus associated with a virulent form of prostate cancer. Maybe what had been thought to be a different strain of XMRV, the strain that causes ME/CFS, is not simply a different strain of that same retrovirus but a different retrovirus which therefore needs its own name. Just speculating.
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Naw, XMRV will become HGRV which makes sense. It's a Human Gamma Retrovirus. The question is what do you call the illnesses associated with it.? For instance you might call Prostate Cancer that is HGRV specific; "H derived Prostate Cancer", you might call ME/CFS; "Human Gamma Virus Neuro Immune Syndrom or HGVNIS", something along those lines. HGRAD has been proposed for those of us who fall under a "Human Gamma Retrovirus Associated Disease", But like Dr. Yes said that could encompass ME/CFS and Autisum and Lyme and Who knows what else. So each might end up with it's own name as well.

SIV or Simian Infection Virus became HIV eventually after being called everthing from HTLV-III to LAC and a couple of others, I don't remember but the Japaneses had their own designation too. So the name change will be proposed but it may take a while for the International community to settle on who get's called what.

The Media will have a bit to do with what it get's called in the end as well. Some illnesses end up being "called" after the people instrumental in bringing them to light. Personally have Mikovitz disease is fine with me. (grins)
 
LJS

LJS

Luke
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East Coast, USA
Sunshine said:
Yes, or maybe the person with Lyme was already harbouring XMRV (HGRV) and the Lyme tick was the activation 'trigger'?

Just as *maybe* puberty (androgen rise) + infectious agent (EBV,CMV, HHV06) = XMRV play time = ME/CFS.
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I have tested positive for Lyme and for XMRV. I have been on Lyme treatment for over two years on year of that was with IV antibitoics and have not improved much. I am wondering if XMRV is playing a roll or causing this. I can not wait for more data to come out.
 
G

Greggory Blundell

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New Jersey, USA
LJS, I contracted Lyme twice in less than a year, and was treated with antibiotics for 30 days. I improved for a time, but have deteriorated ever since. Don't know if I am XMRV+, but my guess is that Chronic Lyme is just Lyme amplified by activated XMRV.
 
Sunshine

Sunshine

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akrasia said:
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.
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Unless, XMRV (HGRV) really isn't transmitted out of the blood.

It's very possible the cluster cases in Tahoe etc, the people who came down with ME/CFS already had XMRV (HGRV) but it wasn't activated before. This makes sense to me because the vast majority of ME/CFS people report an unspecific virus that all leaves people suddenly chronically ill.
 
V99

V99

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I had the BCG vaccine in school in the UK, it's for tuberculosis. It usually leaves a coin sized scare on your arm for life, or mine did.
 
akrasia

akrasia

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215
Sunshine said:
Unless, XMRV (HGRV) really isn't transmitted out of the blood.

It's very possible the cluster cases in Tahoe etc, the people who came down with ME/CFS already had XMRV (HGRV) but it wasn't activated before. This makes sense to me because the vast majority of ME/CFS people report an unspecific virus that all leaves people suddenly chronically ill.
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That's quite plausible except there has to be something that has a strong propensity to awaken the sleeping dragon. Until we have the proper epidemiology, it's anyone's guess. When you listen to "survivors" of Incline Village something tore through that community in a particularly virulent way. Did they all have latent XMRV? There is much to learn.
 
Sunshine

Sunshine

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Yes it's TB as V99 mentioned.

MMR is not BCG.

I'm yet to hear of people getting ME/CFS from MMR (interestingly) which is quite impressive as it's three infections at once in 1 shot in the arm (to save cost over single vaccines), which is a nightmare for someone immune supressed with XMRV (HGRV). Maybe these youngsters go onto develop Autism instead? Or.....XMRV (HGRV) was no longer injected into people years ago and it's only people in their late 20's+ with XMRV (HGRV) and MMR wasn't used then as it's quite new.

I'd love to know the age of the youngest person with XMRV+ blood test who has neuro immune ME/CFS.

All routes lead to the government. There was no need to cover this illness up when it costs them tens of billions $$ per year in lost tax revenue.........unless they (UK, USA) caused a worldwide pandemic and (literally) infected the western world realised their error and has to not speak a word. Hence the need to stay silent and not research what they knew existed anyway and 'nail' anyone who started showing real abnormalities in people with ME/CFS, such as ME/CFS friendly doctor Dr Sarah Myhill who was indeed nailed by the General Medical Council (GMC) for commiting the henious crime of using B12 injections in her ME/CFS patients.

It'll all begin to make sense, and as previously mentioned will make a great tragic movie staring, 'US'.
 
wingfingers

wingfingers

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I would veto this suggestion. We already have The Disease of a Thousand Names. Now Dr Burrascano, a much-respected Lyme Doctor, wants to add yet another, total 1,001. We have a clumsy difficult-to-pronounce name for the virus, XMRV, that's bad enough as it is without adding further insult. What we DO have is a perfectly-respectable, easy-to-say, current, widely used (in all English-speaking countries outside the insular USA), technically accurate and well-known. The term is "M.E." - which just about everyone understands.
 
Gemini

Gemini

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Dr. Yes said:
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.
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AIDS was called GRID, gay-related immunodeficiency disease, until they realized others were affected

how some disease names are chosen:

http://en.wikipedia.org/wiki/List_of_eponymous_diseases

Gemini
 
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