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

[Robyn]

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[pictureofhealth]

Question for Rich, Dr Burrascano, Cort, WPI -
Do we know who else (scientists/doctors/public health officials) was able to attend the WPI's first Scientific Symposium on XMRV/ HGRAD at the new WPI facility this week?

It would be great to know who else was invited/able to be there at/on this historical occasion.

I guess this kind of detail will be posted on the WPI site or elsewhere - in due course.

 

[bullybeef]

If this HGRV virus, is the 'new' name for XMRV it may be very good news.

The CDC would/will bargain on this new name.

Their zero percent XMRV study in CFS will be forgotten about and the CDC were thus victorious in their eyes (ego trip much).
The claims CFS is nothing to do with XMRV or a retrovirus is accepted by the public and medics (ego trip much).

=

No one from the CDC goes to jail yet. (christmas bonus much).

What the WPI and patients get out of this, is maybe, just maybe if we use the name GRAD (not ME CFS) then CDC will 'join in' and do a replication study of GRAD on GRAD. Once a new GRAD is first done.(Not GRAD on XMRV) too many egos again, XMRV has to die in the eyes of the CDC and ALL government health agencies, especiall in the UK. This could mean that the CDC could theoretically help patients with GRAD by 2011/2012 and start doing their job for neuro immune ME/CFS patients as a Centre for Disease control (CDC).

The public trust the CDC and have no idea about the politics and corruption. CDC is happy with a name change as it 'keeps' CFS which is terrible news for those XMRV/HGRV negative. Having said that people with 'true' neuro immune CFS will all be positive as it will be shown to be causative in the near future as we will have a unique immune profile. This unique profile + XMRV (HGRV) = neuro immune ME/CFS.

The psychiatric profession has way too many customers, (patients) and way too much influence and power to just flush CFS label down the toilet. CFS will remain, and GRAD could become a new disease causing infection that the CDC can boast they are world leaders in, world beaters in, researching and advising the public all over the world. (ego trip much). We, the patients, know GRAD is actually neuro immune ME/CFS, but the public won't care or know and health profesionalls due to being professional won't use the name ME/CFS again for those with XMRV/HGRV.

I am hoping this it what this possible name change of XMRV to HGRV means. It's very strange it's suddenly come out like this, too much of a coincidence now the XMRV WPI replication FDA Alter paper's out (NB: for scientists).

Deleting ME CFS, It's immoral as the CDC get away with what happened to us and all the people who have died get forgotten about, yet to change the power structures it's the only way the CDC will come to our aid. The deal on the table (now or in the future) will be a name change and no mention of what the consequences for public health was by insisting that ME & CFS were all mental disorders treated with CBT/GE/Pacing/Anti Depressants/Family Counselling/LP etc etc.

GRAD label (from ME CFS), is a perfect get out clause for the CDC and a perfect way to inject research funding into neuro immune ME/CFS with a new label for the WPI. I am sure if and when this happens, both sides will be happy with the compromise, if somewhat miffed. At the end of the day, it will take a compromise to allow real change to happen and we'll have to accept it.

Think about it, HIV/AIDS that soon killed 50% of people outright who weren't treated never had the label monkey virus, indeed they only got a 'syndrome' label. AIDS. At least GRAD (caused by HGRV) is a disease and not a syndrome which is an upgrade for us. CFS remains a syndrome and the CDC's pet remains unharmed, unlike the people with the label CFS.

The 100 million dollar question is, does CFS exist, and why is it even needed. CFS contains a huge amount of undiagnosed physical and psychological illnesses and it's a lovely way for governments to sit on their hands, regardless if people have XMRV or not. It means unexplained, remains unexplained. Maybe for neuro immune ME CFS though, we are going to have a reason, finally.....and recognition...finally.

If this forum was popular before on breaking news, it just went thermonuclear! Hats off and thank you to all you budding journalists out there helping us all out.

I said this last year. Change the name to removed the association. All we can hope for is the WPI use the science to sink them. If the association with XMRV/ME (HGRV/HGRAD) can be 100% proven, hopefully there will be no way out. The Alter/Lo paper should go along way to helping the WPI bury the likes of Reeves & co.

 

[jspotila]

This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection).
Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.
We plan to announce this at the upcoming NIH retroviral conference this September.

Can anyone share the list of invited participants from the symposium on Tuesday?

Also, is Dr. Robert Silverman (or any of the others who first found XMRV in humans) in this loop?

 

[August59]

If this HGRV virus, is the 'new' name for XMRV it may be very good news.

The CDC would/will bargain on this new name.

Their zero percent XMRV study in CFS will be forgotten about and the CDC were thus victorious in their eyes (ego trip much).
The claims CFS is nothing to do with XMRV or a retrovirus is accepted by the public and medics (ego trip much).

=

No one from the CDC goes to jail yet. (christmas bonus much).

What the WPI and patients get out of this, is maybe, just maybe if we use the name GRAD (not ME CFS) then CDC will 'join in' and do a replication study of GRAD on GRAD. Once a new GRAD is first done (not GRAD on XMRV) too many egos again. XMRV has to die in the eyes of the CDC and ALL government health agencies, especially in the UK. This could mean that the CDC could theoretically help patients with GRAD by late 2011/2012 and start doing their job for neuro immune ME/CFS patients as a Centre for Disease control (CDC).

The public trust the CDC and have no idea about the politics and corruption. CDC is happy with a name change as it 'keeps' CFS which is terrible news for those XMRV/HGRV negative. Having said that people with 'true' neuro immune CFS will all be positive as it will be shown to be causative in the near future as we will have a unique immune profile. This unique profile + XMRV (HGRV) = neuro immune ME/CFS.

The psychiatric profession has way too many customers, (patients) and way too much influence and power to just flush CFS label down the toilet. CFS will remain, and GRAD could become a new disease causing infection that the CDC can boast they are world leaders in, world beaters in, researching and advising the public all over the world. (ego trip much). We, the patients, know GRAD is actually neuro immune ME/CFS, but the public won't care or know and health profesionalls due to being professional won't use the name ME/CFS again for those with XMRV/HGRV.

I am hoping this it what this possible name change of XMRV to HGRV means. It's very strange it's suddenly come out like this, too much of a coincidence now the XMRV WPI replication FDA Alter paper's out (NB: for scientists).

Deleting ME CFS, It's immoral as the CDC get away with what happened to us and all the people who have died get forgotten about, yet to change the power structures it's the only way the CDC will come to our aid. The deal on the table (now or in the future) will be a name change and no mention of what the consequences for public health was by insisting that ME & CFS were all mental disorders treated with CBT/GE/Pacing/Anti Depressants/Family Counselling/LP etc etc.

GRAD label (from ME CFS), is a perfect get out clause for the CDC and a perfect way to inject research funding into neuro immune ME/CFS with a new label for the WPI. I am sure if and when this happens, both sides will be happy with the compromise, if somewhat miffed. At the end of the day, it will take a compromise to allow real change to happen and we'll have to accept it.

Think about it, HIV/AIDS that soon killed 50% of people outright who weren't treated never had the label monkey virus, indeed they only got a 'syndrome' label. AIDS. At least GRAD (caused by HGRV) is a disease and not a syndrome which is an upgrade for us. CFS remains a syndrome and the CDC's pet remains unharmed, unlike the people with the label CFS.

The 100 million dollar question is, does CFS exist, and why is it even needed. CFS contains a huge amount of undiagnosed physical and psychological illnesses and it's a lovely way for governments to sit on their hands, regardless if people have XMRV or not. It means unexplained, remains unexplained. Maybe for neuro immune ME CFS though, we are going to have a reason, finally.....and recognition...finally.

If this forum was popular before on breaking news, it just went thermonuclear! Hats off and thank you to all you budding journalists out there helping us all out.

This is why the CDC has been changing their website so much lately!!

 

[SunnyGal]

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?

It's very significant that Burrascano is interested in all this. He's considered to be one of the most experienced Lyme clinicians.

Interestingly he's now saying that chronic Lyme is a 'completely different' illness from more acute forms of Lyme disease - he says it's always neurological and involves serious immune dysfunction. Sound familiar? I haven't heard him say this before - up till now his view has been that Lyme is Lyme and most cases are treatable with abx. It's worrying though that he says that if you don't exercise you won't get better!

It would be a great step forward if Lyme and ME doctors and researchers could work together.

Here are some notes of a recent talk by him.

http://www.mdjunction.com/forums/ly...6-dr-joe-burrascanos-july-2010-nutsbolts-talk

Jenny

 

[V99]

We can all see that this is means so much more. I'm very excited, ever since Mikovit's name appeared on the conference presentation list.

Don't worry about the CDC being able to weasel out because of XMRV, or the name change. They were meant to be watching for things like this, they had 25 years to do something. They dropped the ball and abused the patients. It's all recorded and dated, same for the UK gangsters. We can fix things so this never happens again. There are too many of us for this to be ignored now.

 

[Sunshine]

Just think .............

Wessely and Reeves can have a theory on HGRV induced GRAD and no one will care. They'll think yea whatever a psychiatrist and their fantasy, just as if someone had a theory that patients beliefs caused or maintained HIV/AIDS.

Wessely and Reeves can only operate inside ME CFS label, and are terribly limp outside it as no one will listen or care what they think because it's all theory and conjecture and supposition.

Wouldn't that be nice.

Additionally anyone with GRAD (ex neuro immune ME CFS) with evidence of wrong doing in the medical file can now sue the people who harmed them, meaning these people counter sue Wessely and Reeves for telling them their hatred towards ME CFS patients was justified at the time. In reality, it never was justified. The public and medics simply didn't care what happened to us, and turned a blind eye when doctors accused us (and often our mothers) of causing neuro immune ME CFS.

Wouldn't that be nice too.

Wessely and Reeves in court, counter sued by powerful doctors who harmed their patients (seeking damages) because on the advise of Wessely and Reeves ( that had no evidence base) they relapsed their patients with exercise via CBT.

Two words: Court Case.

How many people will try and take these people and ruin them back? The damage they have done to ME CFS patients, is biblical in proportion.

 

[August59]

Can anyone share the list of invited participants from the symposium on Tuesday?

Also, is Dr. Robert Silverman (or any of the others who first found XMRV in humans) in this loop?

I don't have a list, but I do know that Dr. Black (Dr. Lapp's associate) from Hunter Hopkins is there and I got the impression that it was a very significant group of people in terms of names and numbers.

 

[SunnyGal]

I think you're right on spot with that, Rrrr. I'm pretty sure that Dr. Mikovits said at some point that chronic Lyme disease could be explained by XMRV, that XMRV may be why some people who get the Lyme bacteria get chronic Lyme while others don't. I can't say where I saw this (Lyme brain ), but I think it was one of her early talks. I'm not at all surprised (and quite elated actually) that they've pulled Dr. B in already. As I have both diagnoses I've been paying attention to when the worlds of XMRV and Lyme will collide. And I fully believe they will. Looks like maybe sooner than later.

i have seen dr burrascano speak and he was very human and down to earth and knowledgeable.

AND PEOPLE, THIS IS HUGE: THE CFS AND LYME COMMUNITIES MAY MERGE.

am i off base here?

 

[V99]

I have a question, does it now look like this is the worst health crisis in the North American continent? because it does to me.

 

[Stone]

Two words: Court Case.

How many people will try and take these people and ruin them back? The damage they have done to ME CFS patients, is biblical in proportion.

You got that right! The hope of living long enough to see those rat-bastards in court is one of the things that makes me hang on day after day. I may not see it, but just hoping for that encourages me to get up in the morning. Not for revenge, but for the sake of JUSTICE.

Deuteronomy 16:20 Justice, justice shall you pursue, that you may thrive...

 

[Lynn]

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

 

[V99]

I don't know about you guys but I want to see jail time for these people.

 

[V99]

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

I think you are right. So many people think this is an endogenous retrovirus. However, it doesn't seem to be the name, it's more of a deliberate attempt to destroy the research.

 

[Dreambirdie]

I'll echo that 'WOW!!!!!!' At first glance I almost want to pronounce it "HAGGARD". Close but no cigar.

HGRAD is a far sight better than many of the other options.

I am really excited to hear about this too.

But I don't know about HGRAD or HAGGARD... ? better than CFS though, for sure.

 

[bullybeef]

Just think .............

Wessely and Reeves can have a theory on HGRV induced GRAD and no one will care. They'll think yea whatever a psychiatrist and their fantasy, just as if someone had a theory that patients beliefs caused or maintained HIV/AIDS.

Wessely and Reeves can only operate inside ME CFS label, and are terribly limp outside it as no one will listen or care what they think because it's all theory and conjecture and supposition.

Wouldn't that be nice.

Additionally anyone with GRAD (ex neuro immune ME CFS) with evidence of wrong doing in the medical file can now sue the people who harmed them, meaning these people counter sue Wessely and Reeves for telling them their hatred towards ME CFS patients was justified at the time. In reality, it never was justified. The public and medics simply didn't care what happened to us, and turned a blind eye when doctors accused us (and often our mothers) of causing neuro immune ME CFS.

Wouldn't that be nice too.

Wessely and Reeves in court, counter sued by powerful doctors who harmed their patients (seeking damages) because on the advise of Wessely and Reeves ( that had no evidence base) they relapsed their patients with exercise via CBT.

Two words: Court Case.

How many people will try and take these people and ruin them back? The damage they have done to ME CFS patients, is biblical in proportion.

On that note, thanks to having a free health service here in the UK, a person can request a copy of their medical records, but it can be refused on grounds that the contents could cause the owner harm! So if theres something in there that the NHS wouldnt wish the person to be privy to, they could refuse access, a give a false reason that no one would be wise to.

I only read this recently on the NHS website.

 

[pictureofhealth]

Cort's going to have to change the XMRV Buzz page to HGRV Buzz!

I dunno - doesn't have the same kind of, er, buzz to it!

 

[bullybeef]

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

 

[akrasia]

The Price of Recognition

I have a question, does it now look like this is the worst health crisis in the North American continent? because it does to me.

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.