IASCFS/ME - Science and the Hold on XMRV Studies

[jspotila]

Way back when, it was the CFIDS Association that funded Dr. DeFreitas's work. And the Association continued to fund her until the Scientific Advisory Committee recommended that funding cease. The Association has a long history of funding research into the role of infectious agents in CFS.

The six current funded grants were awarded in 2008 after a competitive grant process which included scientific peer review as well as Board strategic review. We have not announced a new request for applications because we are focused on building the SolveCFS BioBank as quickly as possible. In June, the Board approved the expansion of the BioBank to include both sudden and gradual onset patients, as well as healthy controls that live with or are related to CFS patients. A Medical Research Advisory Committee reviews proposed studies utilizing the BioBank samples.

For a broad summary of the Association's work on XMRV: http://cfids.org/cfidslink/2010/010607.asp#3r

 

[judderwocky]

Way back when, it was the CFIDS Association that funded Dr. DeFreitas's work. And the Association continued to fund her until the Scientific Advisory Committee recommended that funding cease. The Association has a long history of funding research into the role of infectious agents in CFS.

The six current funded grants were awarded in 2008 after a competitive grant process which included scientific peer review as well as Board strategic review. We have not announced a new request for applications because we are focused on building the SolveCFS BioBank as quickly as possible. In June, the Board approved the expansion of the BioBank to include both sudden and gradual onset patients, as well as healthy controls that live with or are related to CFS patients. A Medical Research Advisory Committee reviews proposed studies utilizing the BioBank samples.

There are evidence of MANY MANY retroviruses switching species right now... why would it end with just her study. Who is on the board?

Even Switzer has been documenting tons of retroviruses apart from XMRV jumping all over the place...

You make it seem like its just up to chance that they haven't been investigating the many other retroviruses present and switching around between populations... People are frustrated they didn't make it happen, or vet researchers to do the kind of research they needed. They just let the chips fall on the floor. At least it appears that way.

After Defreitas some people moved on to other retroviruses.... why didn't they?

 

[Robyn]

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[Cort]

There are evidence of MANY MANY retroviruses switching species right now... why would it end with just her study. Who is on the board?

Even Switzer has been documenting tons of retroviruses apart from XMRV jumping all over the place...

You make it seem like its just up to chance that they haven't been investigating the many other retroviruses present and switching around between populations... People are frustrated they didn't make it happen, or vet researchers to do the kind of research they needed. They just let the chips fall on the floor. At least it appears that way.

After Defreitas some people moved on to other retroviruses.... why didn't they?

Switzer was hardly looking for or interested retroviruses in CFS. How a rigorous, highly vetted (by other researchers) research program can be described as 'letting the chips fall on the floor' is beyond me. I suggest you look at what the program consists of and how they determine who gets the grants and then see if that characterization still holds.

After DeFreitas the retrovirus question was virtually ignored in the CFS research community. IF researchers asked for grants from the federal government or elsewhere they didn't get them. The CAA, however, still funded Grossberg's search for a retrovirus for years after that. They funded no less than three retroviral researchers at the time of De Freitas. After that then neither they nor anyone else in the CFS community did any retroviral work until the WPI's discovery. (The NCF did look for evidence of De Freitas around 2000 and failed to find any).

The CAA is very small research funder.....The NIH and CDC, even with their small CFS research programs, easily fund 10 to 20 times as much research as the CAA every year. If we were to depend on the CAA for creating openings in CFS research we would be in big trouble - they just don't have enough money.

The CDC, by the way, looked for the entire range of retroviruses after the De Freitas paper and didn't find a scintilla of evidence any. That's probably what really stopped the search for retroviruses in CFS.

What the CAA did fund was research on many of the cutting edge topics in CFS including

• Endogenous retroviruses
• Epstein Barr virus
• HHV6
• Repeat exercise studies
• brain abnormalities, etc.
• RNase L

The question re the CAA's program should be whether its innovative, good research - not whether they discovered XMRV. I don't think there's any question but that they have a very innovative research program.

 

[judderwocky]

After DeFreitas the retrovirus question was virtually ignored in the CFS research community. IF they asked for grants they didn't get them. The CAA is a small organization that is only able to fund small projects. While they funded no less than three retroviral researchers at the time of De Freitas, including funding Grossberg for several years afterwards....neither they nor anyone else in the CFS community did any retroviral work until the WPI's discovery. (The NCF did look for evidence of De Freitas and failed to find any).

What the CAA did fund was research on many of the cutting edge topics in CFS including

• Endogenous retroviruses
• Epstein Barr virus
• HHV6
• Repeat exercise studies
• brain abnormalities, etc.

The question re the CAA's program should be whether its innovative, good research - not whether they discovered XMRV. I don't think there's any question but that they have a very innovative research program.

I am afraid i would also differ with that. The WPI found XMRV BECAUSE they were looking for it. It was not an accident.

Also, I appreciate the sentiment of their current studies... ive looked over all of them... but frankly we already have a ton of biomarkers for this illness. Adding more the mix isn't going to convince any of the doctors that laughed at me when i mentioned cfs take it anymore seriously.

Strategically speaking, I would prefer to search for root causes, or treatments that imply a direct cause. (e.g. antiretroviral studies)

 

[eric_s]

The difference is in the two organizations. The MS Society got $50 million in support from its patients in 2008. Its total assets are well over $100 million (you couldn't tell from its website ). The CFIDS Association gets less than a million dollars from its patients and its total assets are around $2,000,000.

You have an organization with 50 times less resources battling with an organization with 50 times more resources for attention on the Hill. We know who's going to win that battle. And its not just MS, its breast cancer, heart disease, diabetes, alzheimer's, parkinson's etc. We are going to lose ALL of those battles - all of them! We are always going to be at the very bottom of the stack.

Of course there are lots of reasons why raising money and advocating for CFS is much more difficult. Only 20% of CFS patients are reportedly diagnosed. The community is poor, it is divided over lots of different issues, and its not a happy community; its a community that, by and large, XMRV being the notable exception, is more interested in what's wrong than in building on what might work.

Its a community that is steeped in its history - that lives in its history - no knock there - there's not alot of positive stuff going on - but still that means there is not alot of attempt to transcend history and build a positive force for change. To some extent you have to do that...you have to give up your gripes and anger in order for something else to show up. Nelson Mandela did that with S. Africa; he declared this was a new day. We're still in the blame mode - we're not in the 'fixit' mode. We don't have a vision for the future we're working towards.

I totally agree!!!!! That's exactly what i'm thinking. The XMRV story gave me hope that there could be an explanation for CFS and treatment and so even if XMRV is not "it", i could never accept to go back to how it was before, where there seemed to be only very slow progress at best.

So if XMRV won't bring the solution i think we will have to change things BIG TIME. And i don't see why this should not be possible. In fact the situation as we had it before was not appropriate, CFS didn't get the attention and funding it would deserve, as we all know, and it's image with some doctors and parts of the public was about as bad as possible.

We would need to get organized much better and raise a lot more money. We would have to make the public and politicians worldwide finally realize what CFS is and what the size of this problem is. I mean, seriously, is there any other illness that afflicts such a large number of people and has an impact that is comparable?
If people realize this, then from us, the public and governments combined there should be enough money available to finally make the necessary progress.

 

[judderwocky]

I totally agree!!!!! That's exactly what i'm thinking. The XMRV story gave me hope that there could be an explanation for CFS and treatment and so even if XMRV is not "it", i could never accept to go back to how it was before, where there seemed to be only very slow progress at best.

So if XMRV won't bring the solution i think we will have to change things BIG TIME. And i don't see why this should not be possible. In fact the situation as we had it before was not appropriate, CFS didn't get the attention and funding it would deserve, as we all know, and it's image with some doctors and parts of the public was about as bad as possible.

We would need to get organized much better and raise a lot more money. We would have to make the public and politicians worldwide finally realize what CFS is and what the size of this problem is. I mean, seriously, is there any other illness that afflicts such a large number of people and has an impact that is comparable?
If people realize this, then from us, the public and governments combined there should be enough money available to finally make the necessary progress.

You have to examine the problem to fixit. I've told you were i see some. I appreciate everybody's optimism though, and frankly i think things are going to change now regardless.... the ball is rolling downhill now....

 

[Cort]

The issues is that they started that AFTER the WPI did....(and they obviously saw that there were reasons to look there) I might have not had CFIDS then, but I have seen the documentaries... some as late as 96 that showed high level CDC officials saying "its probably a retrovirus, that would be what i would think"...

The reason the WPI looked for XMRV was that Silverman found it in prostate cancer tissue samples in patients with RNase L dysfunction. It was not a particularly difficult thing to dream up - but they were the ones that did it - all the praise goes to them.

If you're comparing the CDC's commitment to look for pathogens to the CAA's commitment you're barking up the wrong side of the tree, however. The CDC virtually abandoned t he search for pathogens in CFS many years ago. The CAA has continued to fund research into pathogens in CFS throughout its history; right now, if I remember correctly, they are funding studies on HERV's, EBV and they are involved inthe GSK study.

Honestly, I don't care how much money the CAA is putting forth for the Glaxo Smith Kline study. I
d be very happy if they found a way for GSK to fund most of it 0 in fact I hope that's what they did. The kind of organization I want to support is one that is agile and creative enough to hook up with money rich partners to get its work done for them. I give them double points if they're not spending alot of money on this.

What I'm happy about is that they found a way for a major Pharmaceutical firm to test a rigorously derived cohort of CFS patients for XMRV. That get's Pharma into the game, which is very important, and gets a very good cohort in there as well in the end we have just what you and I want, another study on XMRV going on. To me its all good!

 

[Cort]

I am afraid i would also differ with that. The WPI found XMRV BECAUSE they were looking for it. It was not an accident.

Also, I appreciate the sentiment of their current studies... ive looked over all of them... but frankly we already have a ton of biomarkers for this illness. Adding more the mix isn't going to convince any of the doctors that laughed at me when i mentioned cfs take it anymore seriously.

Strategically speaking, I would prefer to search for root causes, or treatments that imply a direct cause. (e.g. antiretroviral studies)

I would respectfully disagree with the idea that we have alot of biomarkers! We actually don't have any... we don't have any finding that is unique to CFS - if we had that then I think we would have researchers crawling all over us....and the psychological talk would die down.

I'm not saying the XMRV was an accident. The WPI has looked harder for pathogens than anyone else - that's for sure. They've been doing their huge pathogen micro-arrays for years now. That's cutting edge stuff. (Oddly enough XMRV did not show up in them). The idea to search for XMRV didn't take, however, a huge intellectual leap. Honestly I'm surprised that De Meirleir didn't do it since he was all over RNase L for years but if he didn't then the WPI was the next logical choice....good for them!

Hey, all kudo's to the WPI....They found it and XMRV right now has the chance to change everything....It very rightly has superseded all the other research efforts......That doesn't mean that they are not excellent efforts in themselves. None of them, though, has the potential to change the field the way XMRV does but if you're going to blame the CAA for not finding it you might as well blame MERUK and Dr. Klimas and Dr. Cheney and Dr. DeMeirleir and Dr. Baraniuk and the hundreds of members of the IACFS/ME for not finding it because they didn't find it either. Better just to praise the WPI for finding it in my opinion rather than run down the others for not.

 

[eric_s]

In fact, the answer has always been no. The CAA received government funding after it won the bid to deliver the media campaign on CFS....... It won a contract to deliver a campaign and then it used the money from that contract to deliver the campaign.

That money was used the run the media campaign
The CFIDS Association uses money from the CFS Community to run the CFIDS Association.

The two have nothing to do with each other. The idea that the CAA uses government money to run the organization has always, to my knowledge, been completely wrong yet that idea has pervaded some community for as long as I remember.

And even if this was the case (not saying it is, just hypothetically) what would be wrong with that? We need all the money we can get. We need much more government money. In the end what matters is how that money is used. Sure, a big contributor might want to use his influence to decide the course of the recipient but if there are good people leading the organization and there is transparency so the community would be aware if the organization goes in a bad direction, i would not be afraid. And without money you can have all the best intentions and the right ideas but you still don't go anywhere.

 

[judderwocky]

And even if this was the case (not saying it is, just hypothetically) what would be wrong with that? We need all the money we can get. We need much more government money. In the end what matters is how that money is used. Sure, a big contributor might want to use his influence to decide the course of the recipient but if there are good people leading the organization and there is transparency so the community would be aware if the organization goes in a bad direction, i would not be afraid. And without money you can have all the best intentions and the right ideas but you still don't go anywhere.

I think you are both missing my points. Frankly i dont care to press the issue any further.

 

[bakercape]

I've

sent numerous requests to the CAA to ask them why they are not having doctor Vernon do a real replication study? With all the negative studies causing doubt I would think that Dr Vernon could have easily gotten assistance from Dr. Mikovit and done an actual repilcation of the science paper.
I suggested they put a call out for an immediate fundraiser for this cause. Why have they not done something like this? With the attacks the original study and WPI have come under I would think if they can fund blood flow studies they could try to immediately expedite a replication study.
I don't think it's just about money. If they asked the CFS/ ME community for help in the last 8 months for a replication study the checks would have flown in.

 

[V99]

As you may remember if you think about it a bit, the CFIDS Association is partnering with Glaxo-Smith-Kline in the first Biobank study to look for XMRV in a near replication of the WPI's cohort. The patients must have acute onset and they are looking for patients with NK cell abnormalities. GSK, by the way, is the pharmaceutical company that was engaged with WPI to start whipping out a treatment trial. They backed off when the negative studies started pouring in. The CFIDS Association jumped in with their own money to produce perhaps the best XMRV study underway.

Does that sound like they are assisting the CDC in finding XMRV?

Maybe we should ask Suzanne Vernon whether she's helping the CDC find XMRV? She's the one that publicly wrote the CDC study was an exercise in how not to find XMRV.

Does that sound like these organizations are partnering up?

The CFIDS Association has been the CDC's CFS programs worst enemy for several years now. At some point that will sink in (perhaps) or it may be that some individuals will prefer to hold onto their interpretation that the CDC and CAA are kissing cousins. While you can certainly argue that the CAA should have been more aggressive with the CDC in the past, (I don't believe they were ever that close), in any case, it is certainly not what the events of the past two or three years support. They have been doing nothing but butting heads for several years now.

I can give you more examples if you wish - I've done that several times now - somewhat fruitlessly it seems

There are several things to question the CAA about, for sure, but some of these issues are not relevant in my opinion.

I am bewilder that you are answering the post I left. It was not a question, and nor was it meant to be taken seriously. Nothing else to say about it.

 

[eric_s]

I think you are both missing my points. Frankly i dont care to press the issue any further.

I was not specifically responding to your points. I was just commenting on 2 things i read and wanted to give my opinion about it.
I think i'm having a cold since i got up this morning, my throat is sore and i find it very hard to concentrate (usually this is not so much of a problem, if i'm more or less relaxed). But it has not developped yet, so i'm not sure if i'm really getting something.
What i believe is, as i've stated before, that we need a really big, global effort, if XMRV is not it.
Now the problem with a very large movement is probably always that there are different persons out there with different views. So a large organization will probably have to be rather moderate and to some degree conservative in order to be able to keep all those different people on board. And also to be seen as serious by the public. And both is needed to get the necessary funding (a large base of PWCs and a good image with the public and politicians).
Probably both is needed, larger organisations (in every country and they would have to cooperate with each other and be united as much as possible, internationally) that are more conservative and maybe a bit less agile but have weight and are respected and known and are able to unite and smaller players that can be more avantgarde, agile and aggressive.

 

[judderwocky]

I was not specifically responding to your points. I was just commenting on 2 things i read and wanted to give my opinion about it.
I think i'm having a cold since i got up this morning, my throat is sore and i find it very hard to concentrate (usually this is not so much of a problem, if i'm more or less relaxed). But it has not developped yet, so i'm not sure if i'm really getting something.
What i believe is, as i've stated before, that we need a really big, global effort, if XMRV is not it.
Now the problem with a very large movement is probably always that there are different persons out there with different views. So a large organization will probably have to be rather moderate and to some degree conservative in order to be able to keep all those different people on board. And also to be seen as serious by the public. And both is needed to get the necessary funding (a large base of PWCs and a good image with the public and politicians).
Probably both is needed, larger organisations (in every country and they would have to cooperate with each other and be united as much as possible, internationally) that are more conservative and maybe a bit less agile but have weight and are respected and known and are able to unite and smaller players that can be more avantgarde, agile and aggressive.

I agree with you. It needs to be global. My guess is that XMRV might only affect a portion of the population. What we do know is that there are TONS AND TONS AND TONS of other crazy weird viruses migrating around from species to population right now... some of them are very similar to XMRV ... there is that whole study on whether or not we have been infecting cats with XMRV and XMRV related strains in japan ... Switzer has found something like six different retroviruses that have migrated to humans from chimps ... i could be wrong on the numbers...

its almost as if every time somebody looks at a new weird set of symptoms, there are viruses tinkering with things... viral homologues are being implicated in many disease states.. MS , alzheimers... etc. ...

I think... even beyond cfs... our gov needs to start spending more resources on looking new viruses and phenotypes of others that we thought were innocuous... i would expect the next 5-10 years to be interesting if we focused on this.

the problem is that we have assumed that because a few people in a lab were immune the whole population is... a lot of these might lead to variations that infect humans more easily

we live in a time, when these viruses are no longer GEOGRAPHICALLY isolated.... even in other species... isn't there a virus destroying all the bees worldwide??? and the fact that we have been moving them all over the planet has moved the virus or pathogen around.....

(zomg... lightning signing off...)

 

[Cort]

sent numerous requests to the CAA to ask them why they are not having doctor Vernon do a real replication study? With all the negative studies causing doubt I would think that Dr Vernon could have easily gotten assistance from Dr. Mikovit and done an actual repilcation of the science paper.
I suggested they put a call out for an immediate fundraiser for this cause. Why have they not done something like this? With the attacks the original study and WPI have come under I would think if they can fund blood flow studies they could try to immediately expedite a replication study.
I don't think it's just about money. If they asked the CFS/ ME community for help in the last 8 months for a replication study the checks would have flown in.

Are you sure that they are not doing a replication study or something close to it? Their goal was to duplicate the results of the WPI study - that's why they tried to get a similar cohort. I imagine they are doing something very close to the original (or rather using the techniques Dr. Mikovits amended later).

I don't know why they didn't do a fundraiser. It may be that they're very satisfied with what they got and that they got GSK to contribute most of the funding. They are engaged in building this large Biobank and Research network - its a huge endeavor and very costly; it may be that they did what they could with XMRV with the GSK study and are devoting the other money they have to build the Biobank and Network.

 

[V99]

I did ask a number of questions about the CAA, and how they are communicating with the world. The CAA is meant to be looking out for patients, conveying information, funding studies, etc. It should therefore be expected that patients will question such an organisation, and should be welcomed. After all, they would not exist if there were no patients. However, it appears that the CAA find criticism very difficult to accept. They position themselves not on equal ground with those they serve, but as a guardian. This of course is not the position they have been granted, and should never have assumed.

The recent comment, regarding the statement from the IACFS/ME, left on the CAA's Facebook is one example of them filtering vital information. The IACFS/ME is an international organisation that brings together a variety of medical practitioners and support groups, with the aim of exchanging and advancing knowledge about the disease. As far as I am aware there is no other organisation like this in the world. Their opinion on XMRV research is therefore of great interest, because they hold such a unique perspective on the situation. This statement should have been clearly signposted. To leave it as a comment denies people the right to weigh the arguments about the current situation. It shows that the CAA has a position they would like to advance, and a position they would prefer to go unnoticed. It also belittles the members of the IACFS/ME.

The failure of the CAA to also mention which definition they are referring to when posting about Jason and sleep difficulties is very sloppy. People do not have the time to always go through to the link to discover what they are referring to, and would not necessarily need to, when they are aware of which definition the post is highlighting. It is sloppy and has still not been corrected.

The XMRV page is another example of where the CAA needs to clean up its communication act. The subject has clearly grown beyond one page, unless they rethink the current formatting. I wont list the problems with it, but they are numerous, and it continues to receive criticism.

The following is not about the CAA:
As for the hold placed on the NIH/FDA study, I will take this to be a cover up until that paper is released. In the last few weeks I have heard differing accounts of where the paper is at, and the story of why the hold was put in place has also changed. I for one will not be manipulated into thinking that PNAS choose to send the study for further review. It is clear they did not, and it is also clear that the HHS ask for the hold because the CDC is trying to save itself. I have no idea what is about to happen next with this research, but I will never put my trust with the HHS. They have merely fuelled my disgust and mistrust of them.

 

[V99]

The search for a viral cause for ME should never be abandoned, but when XMRV was discovered in 2006, everyone involved in ME research should have been immediately checking that this was not somehow involved. It's not a cleaver step, it's just a ridiculous one not to take.

 

[judderwocky]

I did ask a number of questions about the CAA, and how they are communicating with the world. The CAA is meant to be looking out for patients, conveying information, funding studies, etc. It should therefore be expected that patients will question such an organisation, and should be welcomed. After all, they would not exist if there were no patients. However, it appears that the CAA find criticism very difficult to accept. They position themselves not on equal ground with those they serve, but as a guardian. This of course is not the position they have been granted, and should never have assumed.

The recent comment, regarding the statement from the IACFS/ME, left on the CAA's Facebook is one example of them filtering vital information. The IACFS/ME is an international organisation that brings together a variety of medical practitioners and support groups, with the aim of exchanging and advancing knowledge about the disease. As far as I am aware there is no other organisation like this in the world. Their opinion on XMRV research is therefore of great interest, because they hold such a unique perspective on the situation. This statement should have been clearly signposted. To leave it as a comment denies people the right to weigh the arguments about the current situation. It shows that the CAA has a position they would like to advance, and a position they would prefer to go unnoticed. It also belittles the members of the IACFS/ME.

The failure of the CAA to also mention which definition they are referring to when posting about Jason and sleep difficulties is very sloppy. People do not have the time to always go through to the link to discover what they are referring to, and would not necessarily need to, when they are aware of which definition the post is highlighting. It is sloppy and has still not been corrected.

The XMRV page is another example of where the CAA needs to clean up its communication act. The subject has clearly grown beyond one page, unless they rethink the current formatting. I wont list the problems with it, but they are numerous, and it continues to receive criticism.

The following is not about the CAA:
As for the hold placed on the NIH/FDA study, I will take this to be a cover up until that paper is released. In the last few weeks I have heard differing accounts of where the paper is at, and the story of why the hold was put in place has also changed. I for one will not be manipulated into thinking that PNAS choose to send the study for further review. It is clear they did not, and it is also clear that the HHS ask for the hold because the CDC is trying to save itself. I have no idea what is about to happen next with this research, but I will never put my trust with the HHS. They have merely fuelled my disgust and mistrust of them.

The HHS is merely concerned with covering up the fact that the CDC is underfunded and inept. They have had these issues for years. I'm guessing they don't have time for a "healthcare" crisis something like this could create in the media.

 

[V99]

The HHS is merely concerned with covering up the fact that the CDC is underfunded and inept. They have had these issues for years. I'm guessing they don't have time for a "healthcare" crisis something like this could create in the media.

Hopefully they don't have the money to stop this beast. (We have to know, is it involved or not, and if it is, then who.)