Article: Time to Make a Difference Together by Marly Silverman

Comments

If this is indeed the main problem I don't see a problem. PANDORAa and the MCPWA support the WPI and Phoenix Rising has as well. but you can't wring water out of a rock - none of us has ANY money - and certainly not the kind of money the WPI needs.

The CAA has not provided money to the WPI but we know they had to slash their workforce dramatically because of their money problems and their first Biobank study is an XMRV study with a company that has a huge incentive to find XMRV - Glaxo Smith Kline. Validating XMRV's presence is the most important thing anyone can do right now - and that study will play a key role in doing that.

The truth is that absent a major, major donor nobody has the kind of money the WPI needs and major, major donors, for some reason, are just incredibly rare in the CFS community. A major donor could step up and provide $5 million dollars and settle the WPI;s problems. That happens in other disorders all the time but it doesn't happen in CFS.

The solution is either major donors, alot of little contributions and grants and grants are obviously a huge part of Research Institute's success - that's big money and hopefully the WPI can figure out a way to get more of them.
Wasn't the CAA trying to raise $5 million by the end of 2010? Obviously there is enough money out there to keep the CAA, PANDORA, WCPWA, etc afloat.

Instead of spreading the community's limited resources thin between all of these organizations, why don't we instead cut the dead weight and concentrate money where it will be most effective?

To that end, please donate directly to the WPI: http://www.wpinstitute.org/help/help_donation.html
 
A friend of mine from the UK has often labeled well-liked people or organizations as sacred cows, those whom we are not allowed to criticize, even in an appropriate way without personal attacks. If one does attempt to speak out against a particular agenda or misappropriation of funding or energies, they suffer the consequences of being seen as a toxic, negative, non-team player bent on tearing people down who are working very hard on their behalf. Hillary Johnson has repeatedly groaned at the state of affairs with CFS advocacy. At times, I thought she was perhaps too harsh. With the discovery of XMRV though, organizations are becoming even more transparent in where they have stood all along on CFS issues, diagnosis and treatment. Good intentions and good hearts are not enough to win this fight. And unity is not about singing Kumbaya by mass video conferencing. Khaly Castle states in her latest blog that she must "respectfully decline to Unite". I've made a personal decision to no longer worry about being made out a villain if I disagree with any organization or independent effort. I know who I am and why I fight for me, my family and patients. I respectfully decline to Unite as well.

Please read Khaly's full blog below if you have not done so. I stand behind every word 100%.
There is a huge difference between critiques that empower and attacks that tear down. In one critiques occur as a way to empower that organization - they occur out of a vision of that organization working; in the other it's hard to say there is any vision involved at all - there is anger and frustration but no vision. Many 'critiques' simply trying to prove their point and it's usually a quite black and white point that comes from a belief that the CAA, for instance, is bad or the CDC is bad - and everything the author writes is written to prove the point that that person or institution is bad.

That's an interpretation to have and its a popular one. It's easy, you get a nice righteous feeling - I'm right and they're wrong! It's enticingly simple and it feels so good to be right doesn't it? But does it work? ..Is it an empowering interpretation? Is the interpretation that any organization is all 'bad' - and I mean ANY organization including the CDC and NIH - going to do anybody any good? First of all it completely cuts off any lines of communication. Secondly, while it's enjoyable to have things be so cut and dry - it's just not accurate - the CAA does alot of good work... the CDC has done some good work in the past.

I could take the intrepretation that the ME/CFS Forums hate me! I get trashed there fairly regularly but I recognize that is not a true statement...the fact is that some people in the ME/CFS Forums really dislike me and are very vocal about and I assume others feel differently. Similarly, some things the CAA does are very good and some they do are not so good. Some things the WPI does are very good and some things they've one are not so good.

There are points to build on with every group and 'building' does not mean that strong critiques are not delivered. PANDORA delivered a strong critique of the CDC but it was delivered in a way that it could be responded to; it opened a dialogue.

Putting Groups and People into a Box - The problem occurs when you start putting people and organizations into a box and then start interacting with them like that's' how they are. The thing that chilled my bones with Mindy's post was the statement that Dr. Klimas priority is not the patients. By the time I was done ready I got the impression that Dr. Klimas was being put in a box - and it was a pretty dark box.

Dr. Klimas is not Dr. Wessely but she was in the process of being put in, or at least close to, Dr. Wessely's box. Her career has been focused heavily on elucidating the pathophysiological side of CFS. If it wasn't for Dr. Klimas we wouldn't have natural killer cell dysfunction to point to. Yet because of that study she was being thrown into that box.

I get that the study was upsetting but if we look at Dr. Klimas's career her interpretation of Dr. Klimas is simply not accurate and we need to be accurate! It wasn't an accurate interpretation of a woman who has spent much of her career arguing that CFS desperately needs more pathophysiological research and participating in that and who will continue to do that.

A Different Interpretation - My guess is that face with a CBT study Mindy only had one interpretation available - she's the enemy and can't be trusted. I suggest a different interpretation: Dr. Klimas has found that stress reduction practices are helpful in improving the quality of life and yes, health of some of her patients, and like any good physician she will do anything she can to help her patients. Dr. Klimas also finds that stress reduction practices are not a cure and because of that she is continuing her efforts to elucidate the true cause of CFS. Last year she stopped doing AIDS research entirely in order to focus solely on CFS - expect more immune papers from her in the future.

Missed Opportunity - Mindy had a strong vision of patients acting up forcefully and demanding more funding in very public ways...it was the most important part of the blog and took up most of it, and it's unfortunate, and I imagine that she is a bit chagrined that this other part of the blog has gotten much of the attention.
 
This quote from above is very disturbing and CRUEL. I am sure the families that pandora have helped do not think they are "dead weight". And if really ticks me off when someone tries to tell me where to spend MY money. I donated to the MCWPA and glad I did. In fact I just sent another donation the other day. You don't get to decide for others what is considered "dead weight". Get a grip people. Yes, I am mad!

"Instead of spreading the community's limited resources thin between all of these organizations, why don't we instead cut the dead weight and concentrate money where it will be most effective?"
 
Wasn't the CAA trying to raise $5 million by the end of 2010? Obviously there is enough money out there to keep the CAA, PANDORA, WCPWA, etc afloat.

Instead of spreading the community's limited resources thin between all of these organizations, why don't we instead cut the dead weight and concentrate money where it will be most effective?

To that end, please donate directly to the WPI: http://www.wpinstitute.org/help/help_donation.html
Yes - because they are doesn't mean they have...and their staff is still cut and their programs are still cut...Whether concentrating the money in the WPI is the most effective is a question. It presumes that the BWG program consisting of four or five top labs including the WPI (and Alter/Lo?), and the Lipkin study and the Singh Study and the University of Alberta Study and the Joliceur study and the Glaxo Smith Kline study and whoever else is studying XMRV is not going to be enough. I'm sure the WPI could use the money to make their case but I think a good deal of XMRV fate is out of their hands.

That's because everything rests on having an independent lab find XMRV.....and the WPI showed them how to do it in the first paper and in their amendment to the first paper. That's the blueprint for finding XMRV. That's all researchers need to know. There is literally nothing else (unless there is some weird little factor that is not elucidated in the first paper) they need to know! You can show how variable XMRV is or that it kills these cells or those cells or that it inserts itself here or disappears from the blood of monkeys after 3 weeks or whatever and all those things are just window dressing at this point.

XMRV will live or die based on the WPI's descriptions of how to find it in the Oct paper and in the supplement earlier this year - and in independent labs being able to duplicate their results. It's brutally basic. Ever since they stated we found XMRV and this is how we found it - and this what you have to do to find it - it's been out of their hands. They put their stake in the sand right there. After that it's up to the independent labs to find it.

They could come up with a better test - that is one thing they could do - they changed their testing procedures once...and they could change them again....but I wonder how that will change things. It's not as if other groups are finding 20% or 30% positives and a better test would bring that figure up. They're not finding anything...that's a tough nut to crack...that's a different problem from we just don't the optimal test....

I have been told some studies are coming out that will duplicate even the smallest aspects of the WPI;s test. They will use the same reagants, etc.....Those sound like replication studies......and they will be quite important.
 
I know who I am and why I fight for me, my family and patients. I respectfully decline to Unite as well.
The problem is that if we are not united to at least some degree i don't see how we could be able to raise the funds we need, get enough public attention and recognition and put on pressure, if needed.

We don't have to be united in a monolithical way, that would probably not be good anyway, but it should be a network working towards the common goal of a working treatment, with as many PWCs participating in one way or the other as possible.
Of course, if there was an organization, researcher, physician that is acting againgst our interest, that should be pointed out and people should stop backing that organization, for example, or even take some more offensive measures. But then they should back another one or start a new, better one.
 
The WPI has shown how they found XMRV in the first paper and in their amendment to the first paper. That's the blueprint for finding XMRV. That's all researchers need to know. There is literally nothing else (unless there is some weird little factor that is not elucidated in the first paper) they need to know! You can show how variable XMRV is or that it kills these cells or those cells or that it inserts itself here or disappears from the blood of monkeys after 3 weeks or whatever and all those things are just window dressing at this point but the fact is that everything revolves around finding the virus.

XMRV will live or die based on the WPI's descriptions of how to find it in the Oct paper and in the supplement earlier this year - and in independent labs being able to duplicate their results. It's brutally basic. Ever since they stated we found XMRV and this is how we found it - and this what you have to do to find it - it's been out of their hands. They put their stake in the sand right there. After that it's up to the independent labs to find it.
I'm not really sure what your point is here. No one has disputed that the WPI has detailed how to find XMRV. The real issue is that, despite this information being available for over a year now, no one has tried to follow it yet. This information could be tattooed on the forehead of every retrovirologist in the world, but it wouldn't matter if they just ignore it and instead fall back on a different methodology shown to be insufficient.

If you are suggesting that the WPI doesn't need funding because the science is now "out of their hands," then I have to adamantly disagree. Denying them funding now would be DeFreitas Redux.
 
... This information could be tattooed on the forehead of every retrovirologist in the world, but it wouldn't matter if they just ignore it and instead fall back on a different methodology shown to be insufficient.
...
What methodology has been shown to be insufficient, asleep? This is an interesting issue to explore because it could explain the difference between the groups that have found XMRV and those that have not.
 
How the CFSAC thing went.

An independent advocate saw the PANDORA press release and asked to use it in a meeting scheduled with NIH officials at the XMRV Conference. This press release is very strongly-worded and even says Congressional hearings are needed into the government neglect. These points are in there because PANDORA has listened to what patients want. See it here: http://www.pr.com/press-release/258171

Thereafter, PANDORA was told that this independent advocate and others were planning to do a "passive demonstration". That is do an action at the CFSAC that will be attention getting, but hopefully not get them thrown out. The shirts were not PANDORA's idea.

But, the flash cards were PANDORA's idea and was paid for by PANDORA.

Other things PANDORA has done in recent months: letter to Red Cross (after a patient asked us to do it) that asked for a change in policy. You can see this letter here: http://pandoranet.info/documents/AmericanRedCrossFinalRevisedLetter11-14-2010.pdf They made an announcement within a week that their policy was changing and sent a response back saying they agreed with some of the points in this letter.

PANDORA wrote a letter to the FDA BPAC. It was worded similarly to the Red Cross letter. That committee voted to ban ME/CFS patients from donating blood. However, FDA has not taken action yet.

PANDORA stood up and led the way for support for Lisa Baldwin in a fight to get her son back.

PANDORA sent a letter to a judge when a woman was going to have her children taken from her in a divorce case based on misinformation about her illness.

PANDORA is donating services to the grassroots group: MCWPA where patients get to decide based on their voice, what they want to say. This led to an ad in The Washington Post. Without PANDORA stepping forward, this would not have happened.

PANDORA has helped to publicize research discoveries, including the WPI finding. And of course, board members and many of the volunteers with PANDORA projects donate to WPI.

We need the research institutions and we need people to donate to them. But we also need organized and planned advocacy and assistance with individuals. The ultimate goal is the same, but tackling the enormous problems takes different, but complementary approaches.

PANDORA and MCWPA has a great relationship with researchers, including individuals at WPI.

Oh, and there's more. But I have to go do some work for the patients now.
 
What methodology has been shown to be insufficient, asleep? This is an interesting issue to explore because it could explain the difference between the groups that have found XMRV and those that have not.
In a nutshell, I'm referring to the exclusive use of unvalidated PCR in all of the negative (0/0) studies. By unvalidated I mean that the PCR assay was not shown to be able to detect wild-type XMRV in a known positive clinical sample. Some of them showed they could find synthetic XMRV in spiked water or DNA, but this is not the same thing.

PCR is a very complex process that requires correct calibration of many parameters (primers, reagents, temperatures, etc, etc).

I linked to the following paper in another post: Detection of Xenotropic Murine Leukemia Virus-Related Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions

Quote from the paper:

Additionally, the failure to detect XMRV may be attributable to differences in the detection techniques employed. We have found that detection of XMRV required rather specific conditions.
The WPI and VIPDx have abandoned straight PCR w/o culturing because it proved too unreliable. Yet, this fact seems lost on those churning out negative PCR studies.
 
I'm not really sure what your point is here. No one has disputed that the WPI has detailed how to find XMRV. The real issue is that, despite this information being available for over a year now, no one has tried to follow it yet. This information could be tattooed on the forehead of every retrovirologist in the world, but it wouldn't matter if they just ignore it and instead fall back on a different methodology shown to be insufficient.

If you are suggesting that the WPI doesn't need funding because the science is now "out of their hands," then I have to adamantly disagree. Denying them funding now would be DeFreitas Redux.
You are right and you are wrong in my opinion. Researchers have essentially replicated the fundamental parts of the PCR test. In fact they've gone beyond them. The WPI searched for 2 or 3 portions of the XMRV genome....Some of the other studies have searched for those parts AND others; that's what I was told by a researcher. By all rights they should have found a higher prevalence of XMRV than the original study.

Ditto with the antibody tests... some of them are looking for wider ranges of antibodies in hopes that they will pick up something. That's what I was told. I can't back and look at all the papers - but that's what was explained in detail to me. Theoretically they should be picking up more.

What they haven't replicated are the little details; the same type of reagant, the same types of test tubes, the same type off storage........these are things that usually don't matter - so they can't be blamed for not doing them...

I was told studies are coming out that are replicating the little details now.
 
In a nutshell, I'm referring to the exclusive use of unvalidated PCR in all of the negative (0/0) studies. By unvalidated I mean that the PCR assay was not shown to be able to detect wild-type XMRV in a known positive clinical sample. Some of them showed they could find synthetic XMRV in spiked water or DNA, but this is not the same thing.

PCR is a very complex process that requires correct calibration of many parameters (primers, reagents, temperatures, etc, etc).

I linked to the following paper in another post: Detection of Xenotropic Murine Leukemia Virus-Related Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions

The WPI and VIPDx have abandoned straight PCR w/o culturing because it proved too unreliable. Yet, this fact seems lost on those churning out negative PCR studies.
The reason is that it is lost is that the WPI stated in the Science paper that they were able to find XMRV in 2/3rds of patients using PCR. There was no hint that this was going to be a problem then. There were no caveats about multiple testing or using the wild type virus that I remember - just follow the instructions on the page and do the PCR.

In any case while PCR may not be as reliable as culturing that doesn't mean you can't find it using PCR...it just means it's not as good. VIP Dx sold alot of test kits using PCR.......I would agree if PCR was turning up lower percentages of XMRV that something was off...but the problem for me is that we keep getting zero percentages. That suggests to me something else is going on other than PCR is not as good a medium for testing is going on.

Remember how this went time-wise for them. Silverman asked them to look for it in their samples and they looked for it and they found it. They didn't have to culture for it or use the wild type virus. They didn't even have the wild virus did they? They looked for it, I assume using the one type they had and that was Silverman's clone and they found it - using PCR..

Everything else came later...Culturing came after they found the virus and wanted to grow it... that is my sense. Later it made more sense to test for XMRV with culture because culture was more sensitive - but that doesn't mean it shouldn't be able to be found by PCR. Again it's the zero results that worry me.

Like I said, I was told studies replicating the WPI's PCR techniques down to the nitty gritty details (reagants, etc. ) are being done and they are using live virus to create their tests - so all this will hopefully get cleared up :)
 
... By unvalidated I mean that the PCR assay was not shown to be able to detect wild-type XMRV in a known positive clinical sample. ...
How did the WPI demonstrate that their PCR assay was capable of detecting "wild-type" XMRV in a "known clinical positive"?

...The WPI and VIPDx have abandoned straight PCR w/o culturing because it proved too unreliable. Yet, this fact seems lost on those churning out negative PCR studies.. ...
Lo and Alter didn't culture, they used straight PCR.
 
Divided we're falling?

Somewhere on this thread (I think!) someone raises the question of why more PWC don't join in mass actions. I think the reason is partly to do with the sheer number of different organisations and initiatives and it being hard therefore to tell how much of a following each group has and therefore whether it's likely to have a chance of success and is worth putting our scant energy into. I think this is where the internal divisions among PWC hurt us.

In an ideal world I'd like to see a much smaller number of larger groups who collaborated on actions and would get the support of more PWC. It saddens me to see the waste of time, resources and political power that arises from personality clashes and internal disagreements. Surely there are half a dozen fundamental things that all the groups could agree on - the need for biomedical research, the need to challenge the psychosocial model, the need to influence the CDC/NIH, the need to have a SEP with appropriate expertise, the need for fundraising, etc. The things around the edges that they don't agree on are surely unimportant in relation to these (famous last words :D). Surely they could agree on some mass actions to support these goals.

There should be tens of thousands of us taking part in actions, not the few hundred that currently seem to be the case.
 
How did the WPI demonstrate that their PCR assay was capable of detecting "wild-type" XMRV in a "known clinical positive"?
They didn't. But then again, how could there have existed a positive clinical control prior to the discovery of the first one?

That said, does a positive finding need a positive control? They used negative controls to show they weren't getting false positives. Logically, a positive control is only needed to disprove false negatives (and this is where all the 0/0 studies fall flat), which doesn't apply in the case where you actually find something.

Furthermore, the weight of evidence from the Science study (ability to culture and sequence the virus, serological evidence) provides reasonable proof, to me at least, that they did in fact identify positive clinical samples. Of course there is a possibility that they didn't, but the fact that all subsequent negative studies failed to even consider using this likely positive control is troublesome.

Lo and Alter didn't culture, they used straight PCR.
I don't believe I ever stated that you couldn't find XMRV using straight PCR. Rather, I was pointing out that PCR is very complex and there are a great many ways (and, potentially, previously overlooked ways) in which one's PCR assay can fail even in the presence of XMRV. Therefore, it cannot be viewed as a scientific panacea.
 
Putting Groups and People into a Box - The thing that chilled my bones with Mindy's post was the statement that Dr. Klimas priority is not the patients. By the time I was done ready I got the impression that Dr. Klimas was being put in a box - and it was a pretty dark box.
Cort, I didnt say that Dr. Klimass priority is not the patients. What I said in my post was this: I believe Klimass name on that study shows that her priorities are not always patients priorities, no matter how proactive shes been to the cause over the years. I believe thats true. If you polled every patient on this forum, I believe most would say that they would rather have had Klimas do a biomedical study than a CBT one.

A Different Interpretation - My guess is that face with a CBT study Mindy only had one interpretation available - she's the enemy and can't be trusted.
Cort, again this is not what I said or meant. Nancy Klimas has been a strong advocate for ME/CFS. I believe, however, that her doing the CBT study was a waste of precious research dollars that should have gone to biomedical research.
 
You are right and you are wrong in my opinion. Researchers have essentially replicated the fundamental parts of the PCR test. In fact they've gone beyond them. The WPI searched for 2 or 3 portions of the XMRV genome....Some of the other studies have searched for those parts AND others; that's what I was told by a researcher. By all rights they should have found a higher prevalence of XMRV than the original study.

Ditto with the antibody tests... some of them are looking for wider ranges of antibodies in hopes that they will pick up something. That's what I was told. I can't back and look at all the papers - but that's what was explained in detail to me. Theoretically they should be picking up more.

What they haven't replicated are the little details; the same type of reagant, the same types of test tubes, the same type off storage........these are things that usually don't matter - so they can't be blamed for not doing them...

I was told they are replicating the little details now.
The reason is that it is lost is that the WPI stated in the Science paper that they were able to find XMRV in 2/3rds of patients using PCR. There was no hint that this was going to be a problem then. There were no caveats about multiple testing or using the wild type virus that I remember - just follow the instructions on the page and do the PCR.

In any case while PCR may not be as reliable as culturing that doesn't mean you can't find it using PCR...it just means it's not as good. VIP Dx sold alot of test kits using PCR.......I would agree if PCR was turning up lower percentages of XMRV that something was off...but the problem for me is that we keep getting zero percentages. That suggests to me something else other than PCR is not as good a medium for testing is going on.

Remember how this went time-wise for them. Silverman asked them to look for it in their samples and they looked for it and they found it. They didn't have to culture for it or use the wild type virus. They didn't even have the wild virus did they? They looked for it, I assume using the one type they had and that was Silverman's clone and they found it - using PCR..

Everything else came later...Culturing came after they found the virus and wanted to grow it... that is my sense. Later it made more sense to test for XMRV with culture because culture was more sensitive - but that doesn't mean it shouldn't be able to be found by PCR. Again it's the zero results that worry me.

Like I said, I was told studies replicating the WPI's PCR techniques down to the nitty gritty details (reagants, etc. ) are being done and they are using live virus to create their tests - so all this will hopefully get cleared up :)
As I said to Sam, I don't think I've stated that you cannot find XMRV using PCR. Obviously, XMRV has been found by PCR by both Ruscetti et al and Lo et al.

This issue is that PCR is not a one-size-fits-all technique. It is open to many confounding factors that can consistently preclude one from finding XMRV even if it is there (hence the Danielson study I linked to). Add to that the fact that none of the 0/0 studies used a positive clinical control to rule out false negatives, and it's not very difficult at all to understand why so many researchers are coming up empty-handed.

I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws. Frequently, the scientific inadequacy of these studies is obscured behind a dissembling wall of non-truths and apologetics.
 
... Add to that the fact that none of the 0/0 studies used a positive clinical control to rule out false negatives, and it's not very difficult at all to understand why so many researchers are coming up empty-handed....
But the WPI didn't use a positive clinical control either.
 
...

I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws. Frequently, the scientific inadequacy of these studies is obscured behind a dissembling wall of non-truths and apologetics.
Lo and Alter could not find classic XMRV.
 
...

I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws. Frequently, the scientific inadequacy of these studies is obscured behind a dissembling wall of non-truths and apologetics.
Lombardi and colleagues failed to find PMRVs.