Whittemore Peterson Institute: XMRV: What's really important?

[VillageLife]

Found this new message on the wpi facebook page,

Whittemore Peterson Institute: XMRV: What's really important?

XMRV is a relatively new human retrovirus. Most of the biology of XMRV is still unknown including the knowledge of exactly how this virus is transmitted between humans. Just like HIV, it may not cause the same symptoms in all who are infected. Co-infections and immune reactions to the virus may create different outcomes in those who are infected.

The association of CFS to XMRV is very strong when one uses a clinically validated test to detect XMRV, but this alone does not prove causation. The question is: Does it really matter what the disease is called, if you are terribly sick and infected with a retrovirus? Shouldn't we be caring for the ill and learning how to stop this virus from spreading instead of debating if someone really has CFS or not?

 

[VillageLife]

Does it really matter what the disease is called, if you are terribly sick and infected with a retrovirus?

exactly!!!! THIS IS THE BEST THING ANYONE HAS SAID SO FAR!!!! thankyou WPI!!!

 

[V99]

Exactly. XMRV will not be the cause for everyone, but it is the start that the CFS community needed.

 

[birddog]

Our government was not looking for the Virus in CFS..... It is outrageous that scientific world needs a lot mor time forthe same old same research before there is help for those of us who have losted years to this disease.......they have been working on XMRV since 2006!...... It is unbelievable to me that ten months after the Science paper WPI has not been given large sums of money from our government for research. It is outrageous that the best that the CDC could offer was a study of 50 people......Lets demand an urgent change in the way CFS is treated!

 

[knackers323]

I agree birddog, it is a joke. but what do we do?

 

[ukxmrv]

Because if someone doesn't have CFS (or any of the diseases implicated in XMRV) and they are included en-masse in research projects that claim to be about CFS, then the results may not be meaningful.

The results of these projects will be used to discredit us.

It is important that the patient populations are selected properly. If in doubt, look at Lenny Jason's work.

Other than that and if XMRV does turn out to be causal or very important - is there any point? Well only, to identify the different paths that the virus can lead to.

 

[V99]

what ukxmrv said

 

[muffin]

Agree - Research on a Retrovirus should have continued for the sake of medicine

The simple fact that another Retrovirus was found at/around the same time as the HIV Retrovirus should have been more than enough to do very serious research instead of killing off that research.
We all know the CDC did this one delibertly - kill off research that may possibly help in CFIDS. But in doing so, they killed off research that may well have helped solve/cure other diseases and possibly a number of cancers, in addition to the now 4 year old finding of XMRV-Aggressive Prostate cancer.

For the sake of medical research, the Defreitas Retrovirus work should have gone on and at a fast clip. When this all finally comes out, I really do expect there to be a massive uproar in the public.
Imagine a Federal org knowing and concealing information and killing off research and funding on something so disabling and deadly for 30 years? When people realize that this has been in the blood supply and is contagious in other ways non-sexual, they are going to tear down the CDC's new over-priced buildings. How good of our government health orgs. to not do their job with a real epidemic and allow our children to be the sitting targets because of this. It's the children and the damage done to them and the potential damage to them that's really going to start that bulldozer going. And the CDC deserves it as well as the HHS and NIH. Both federal orgs (HHS/NIH) knew or should have known what the CDC was up to - and most likely some within those orgs were aware of what the CDC was doing and aiding and abetting the whole horrid situation.

Wait. This is going to be one heck of a scandal that will keep on giving and giving. Say HELLO to massive investigations and oversight (can you say bathroom passes?) and funding cuts so severe that they may have to take all the new expensive buildings and furniture and water works away from the CDC. Poor them...

 

[birddog]

i agree ukxmrv and v99, but we have X+ in large enough numbers to start working on treatment protocols....... I am interested in getting my health back and not wasting time on who did what or taking another 25 years to define sub groups of cfs. We need a focus on leadership in funding those that are thinking outside of the box. Please, consider the years of work on changing the name of CFS and what did we get.....nothing......for those of us sick for many years help is going to arrive from groups like WPI working outside the box. Mikovits noted that studies for XMRV had not started with their protocol, but tired to reinvent the wheel.......so, why not start research with those that are X+ and work from that starting point to define sub groups? I thing change will arrive when we find a way to fund the research.

 

[V99]

Yep, Governments need to fund research now.

 

[Angela Kennedy]

i agree ukxmrv and v99, but we have X+ in large enough numbers to start working on treatment protocols....... I am interested in getting my health back and not wasting time on who did what or taking another 25 years to define sub groups of cfs. We need a focus on leadership in funding those that are thinking outside of the box. Please, consider the years of work on changing the name of CFS and what did we get.....nothing......for those of us sick for many years help is going to arrive from groups like WPI working outside the box. Mikovits noted that studies for XMRV had not started with their protocol, but tired to reinvent the wheel.......so, why not start research with those that are X+ and work from that starting point to define sub groups? I thing change will arrive when we find a way to fund the research.

I think 'sub-groups' based on a ubiquitous symptom of 'fatigue' has led to the shambles facing us all.

Nevertheless, the issue of establishing 'Canadian cohorts in order to (a) replicate WPI work and (b) establish stringent models of neurological illness AWAY from other 'fatigue' causing conditions (running into thousands, whatever they are), which will have one extra effect that 'Canadians' who are XMRV negative (for whatever reason) are not left to dangerous psychogenic dismissal in the meantime, is urgent.

 

[twopenneth]

I don’t know if this is appropriate but would Erin Brockavich be an advocate? She may be able to raise the XMRV contoversy to a wider audience. I’ve sent an email to her with some videos. I feel it would be better coming from our American Colleagues. http://www.brockovich.com/contact.html
http://www.facebook.com/l.php?u=http://www.youtube.com/watch?v=AyZ_ulbD-zg&h=1958f
http://www.facebook.com/l.php?u=http://www.youtube.com/watch?v=PuxbjYENINo&h=1958f
http://www.facebook.com/group.php?g...temore-Peterson-Institute/154801179671?ref=ts

 

[VillageLife]

I think wpi are saying, can't we start looking at xmrv positives who are ill! And start sorting out treatments.

 

[serenity]

that's so funny, twopenneth, i always think of Mikovits as an Erin Brockavich too

 

[biophile]

Our government was not looking for the Virus in CFS..... It is outrageous that scientific world needs a lot mor time forthe same old same research before there is help for those of us who have losted years to this disease.......they have been working on XMRV since 2006!...... It is unbelievable to me that ten months after the Science paper WPI has not been given large sums of money from our government for research. It is outrageous that the best that the CDC could offer was a study of 50 people......Lets demand an urgent change in the way CFS is treated!

The simple fact that another Retrovirus was found at/around the same time as the HIV Retrovirus should have been more than enough to do very serious research instead of killing off that research. [...] This is going to be one heck of a scandal that will keep on giving and giving.

I am interested in getting my health back and not wasting time on who did what or taking another 25 years to define sub groups of cfs.

Yep, Governments need to fund research now.

The lack of urgency is indeed a major problem, and is tracable back to the assumption that ME/CFS is a psychosomatic functional illness where viruses aren't really that important even if found. Many people currently see XMRV as "just another CFS virus that won't pan out like all the others". This may or may not be true, but it is precisely this attitude and heel dragging that is going to cause major delays in progress even when the truth is revealed for real. I think the best we can hope for now is that the NIH/FDA study (XMRV positive) will prompt a bit more interest in XMRV in relation to ME/CFS. Perhaps the floodgates of funding will only be opened after other scientists confirm a role for XMRV and demonstrate why the CDC's study was a dud.

I think 'sub-groups' based on a ubiquitous symptom of 'fatigue' has led to the shambles facing us all.

Nevertheless, the issue of establishing 'Canadian cohorts in order to (a) replicate WPI work and (b) establish stringent models of neurological illness AWAY from other 'fatigue' causing conditions (running into thousands, whatever they are), which will have one extra effect that 'Canadians' who are XMRV negative (for whatever reason) are not left to dangerous psychogenic dismissal in the meantime, is urgent.

Good point. I would go as far as saying that the "Reeves" patients shouldn't be subject to automatic psychogenic dismissal either, even if a large percentage of them do report childhood trauma.

 

[Lynn]

I would go as far as saying that the "Reeves" patients shouldn't be subject to automatic psychogenic dismissal either, even if a large percentage of them do report childhood trauma.

Childhood trauma is a ridiculous way to differentiate patients. But I am sure a CFS patient may have XMRV and also have been traumatized as a child. XMRV wouldn't care one way or the other. It is probably true for all illnesses. If they looked at cancer patients, how many of them would have reported some kind of physical/emotional abuse as a child? But no one asks that question because they aren't trying to find a psychosomatic reason for cancer.

Lynn

 

[biophile]

Childhood trauma is a ridiculous way to differentiate patients. But I am sure a CFS patient may have XMRV and also have been traumatized as a child. XMRV wouldn't care one way or the other. It is probably true for all illnesses. If they looked at cancer patients, how many of them would have reported some kind of physical/emotional abuse as a child? But no one asks that question because they aren't trying to find a psychosomatic reason for cancer.

Yes, exactly. There's also the possibility that psychological stress can have a detrimental effect on the same biological processes that lead to ME/CFS and other conditions such as heart disease. A legitimate association to "stress", if existent, does not rule out organic disease.

 

[citybug]

Can anyone write a petition to ask for Congressionally Mandated Research on XMRV (and another for parliament, etc)? This is faster track funding through the Dept of Defense. They give grants for work on breast cancer. Dr. Klimas and Dr. Mikovits both mentionned them months ago.


This would give us something to send to other affected groups, and could be handed out the old paper way for the patients not staying on the internet. Even if it doesn't work directly, tells congress what we want.

 

[jspotila]

Can anyone write a petition to ask for Congressionally Mandated Research on XMRV (and another for parliament, etc)? This is faster track funding through the Dept of Defense.

The CFIDS Association is working on this, trying to get CFS listed on the DoD list of fundable diseases.

 

[muffin]

Not so sure this is a new virus. May well be an old virus and only found in the mid 1980s and then again (maybe another or different strain,etc) again by WPI in 2008. We don't know. Look at the clusters that go way back to the 1930's. Also think I read somewhere that CFIDS had many names but same symptoms generally over the last 100 or so years.
We just don't know if this is an old or new virus. For what that was worth...