Death or glory ?

[Quilp]

The dust has settled and the initial euphoria has normalised, but now more than ever we need answers. My brain fog is so bad, so please anyone who can help please do. In particular :-

1) Is Reeves finished ? If he is, Wessely and White must fall here in the UK.
2) Have other lab tests given indications on when their results will be announced, in particular the CDC ?
3) Where do WPI go from here and what do they plan to do next and when ?
4) Do we still believe this is the BIG one ? Are cracks starting to emerge ?

Finally there are huge implications here that have not been touched upon. In short, if this turns out to be a big failure, the CDC will punish us in ways we can all imagine; and of course here in the UK, it will finish any hope we had of ever getting research into this field. Put simply, we can expect to be ill for the rest of our lives.
For what it's worth i believe this is the beginning of the end for Reeves et al.
Thank you so much to those that are ill like myself, but are still able to give us all valuable information.

Kind regards, Mark

 

[Min]

Any taxpayer funded research done in the UK will use the psychiatrist-designed Oxford criteria to select patients. This includes large numbers of people with mental conditions but excludes those with severe M.E. The FINE and PACE trials use this criteria.

The results of the flawed research done will therefore be used to claim that there is no xmrv in the UK. No doubt AfME will somehow be involved in this.

ME Research UK are trying to fund independent research into xmrv. They need every penny we can give them.

 

[imready]

Quilp

2) Have other lab tests given indications on when their results will be announced, in particular the CDC ?

On the WPI facebook page a simuilar question was asked. I found it interesting because I feel on the edge of my seat and I'm ready for the next step. I'm in a relapse right now and i'm pretty much bedridden. So when I'm at my sickest I'm really desparate for help to ease this misery. So enough about me.

Here is what was posted on WPI facebook.

a question for the WPI ... i
was laying here daydreaming about when we'll start hearing the next wave of major news and it got me to thinking. (oh oh)
how long did it take after the blood tests were developed, that you were able to publish in SCIENCE?
My reason for asking is you know we're all impatient (!!!) and i wond...er how long it might take before the other scientists begin to duplicate your result and move on to the next stage in a huge way!
i know it might help me have a more realistic view of how things work in the field.
thank you

WPI RESPONSE,
December 26 th- found X Judy is quoted In some article can't remember which one
Submitted May 6-
Published Oct 8-

 

[Eric Johnson from I&I]

I also found that Dec 26 information interesting. I would hope confirmatory work would take less than nine months to see publication. It shouldn't take quite as long (five months) to review, though editors and reviewers will still be nervous be nervous because it is so important. And it probably shouldn't take four months to do the experiments. I guess I'm hoping for 6 months total, thus early May 2010. But who knows. It could be Dec 2010 for all I can say.

 

[hvs]

1) Is Reeves finished ? If he is, Wessely and White must fall here in the UK.

We have not heard a peep from Reeves since the embarrassing "my expectation is that we will not [replicate the WPI's findings]" quote in the NY Times. Reeves might have been given orders from above to zip it. It is also the case that his lab is not in charge of the replication study (even if some of the patients being tested are his bogus sample).

But Reeves is pretty well entrenched. It is difficult to dislodge a federal employee of his rank, plus he has Whistleblower status for supposedly blowing the whistle on fraud in his department (which by many accounts he was actually taking part in). If he wanted, he could sue the CDC for allegedly punishing him for blowing the whistle years back.

He can, however, be marginalized. He took a good stride in doing this with his ill-considered words to the Times. His bosses got an earful at the CFSAC meeting. They might see the wisdom in taking it even further.

 

[kurt]

The dust has settled and the initial euphoria has normalised, but now more than ever we need answers. My brain fog is so bad, so please anyone who can help please do. In particular :-

1) Is Reeves finished ? If he is, Wessely and White must fall here in the UK.
2) Have other lab tests given indications on when their results will be announced, in particular the CDC ?
3) Where do WPI go from here and what do they plan to do next and when ?
4) Do we still believe this is the BIG one ? Are cracks starting to emerge ?

Finally there are huge implications here that have not been touched upon. In short, if this turns out to be a big failure, the CDC will punish us in ways we can all imagine; and of course here in the UK, it will finish any hope we had of ever getting research into this field. Put simply, we can expect to be ill for the rest of our lives.
For what it's worth i believe this is the beginning of the end for Reeves et al.
Thank you so much to those that are ill like myself, but are still able to give us all valuable information.

Kind regards, Mark

At this point we only have one study. In most research fields that is not enough to make any claims, certainly not a basis for changing the treatments of millions of sick people. We have seen many single studies before with claims to have found 'the big one' explaining CFS.

And the fact that it appeared in Science is not proof of anything, they have goofed before. Until multiple confirmation studies are published, I expect little movement in the positions of government agencies in both the US and UK and elsewhere. However, with online journals the process of publication can be very rapid, I expect we will see the first confirmation study reports within a few months. We will not have to wait years for this one to play out. My prediction - within one year we should have a good idea whether WPI's XMRV findings are valid for CFS, and maybe also for a few related conditions. And if all goes well, within two years we may have results from early clinical trials for treating XMRV. But right now there is not enough published data to prove anything or change treatment programs. Certainly not clear enough for the CDC to make any changes in their view of CFS (although we might like them to). However, maybe Reeves or others will make changes of their own accord as they see the shift coming, that might be wise self-preservation for their careers, to be out of the picture when the other shoe drops.

One study is not enough, I can not emphasize that enough. I was a researcher before getting CFS and in some areas where I worked I surveyed as many as 100 studies on a single topic before drawing any firm conclusions, and even then, if the topic was murky, one still had to rely on a best estimate. Proof is very, very difficult to establish in a complex environment, and virology and immunology are complex.

And if we all do NOT have XMRV and/or that is NOT the real ultimate cause of CFS I want to know that too, as I think we all should. Confirmation studies should show this.

In my view the hype about XMRV is partly about WPI funding, and while that is a good thing, we all want to see CFS centers funded, I hope this is not creating false expectations that there will be answers soon. Many foggy-brained PWC may be conflating the issues of social acceptance for our illness with effective treatments here. A retroviral explanation would definitely improve the acceptance that our condition is real, but we do not want that label if it is not the truth, even if it would improve our recognition, because ultimately we want to become well again! So some patience here is important. We need more studies.

Real answers may be a long way off even if XMRV is involved in CFS. Meanwhile, there are many directions a person can continue to pursue treatment, and as each PWC is different and responds differently, you will never know what works unless you try several treatment directions out.

 

[hvs]

4) Do we still believe this is the BIG one ? Are cracks starting to emerge ?

There are some self-appointed naysayers on these forums but they seem to be protecting their feelings from disappointment more than anythings else. I have not heard a good, logical attack on the theory of close association between xmrv and this illness that hits home.

If you want to read someone who is cautious, but basing his caution on tons of knowledge, read everything that Cort has written on this topic.

Also know that the American CDC/NIH replication effort WILL fail to replicate the finding of XMRV in CFS patients at the same high rate as did the WPI. That is because, as you probably know, they are using bogus samples at a certain rate. (They are using blood from people who had depression or morbid obesity instead of CFS. They claim they'll use WPI's samples, too, but this was news to Annette Whittemore when she heard it.) Yes, the experts in the field will understand why the CDC/NIH found a lesser rate of xmrv infection, but the news media and internet will just be abuzz with the word "failure." People with financial or institutional interests in the status quo will shout it from the rooftops.

This news will in fact not prove that this is not the Big One.

XMRV might not be the Big One, but for the moment nothing has undermined the Science paper.

 

[usedtobeperkytina]

My thoughts

My thoughts:

I think the confirmation may take a few months because other centers don't have the samples ready to be tested the way WPI had. Now, they may use the same samples.

I think we need to realize that this has already been validated by National Cancer Institute and Cleveland Clinic. That is why Coffin said that for an initial study, it is very good. It had 101 patients and 218 controls. Most initial studies have from 35 to 80 patients. It was backed up by NCI and Cleveland Clinic. And they were careful.

But, more studies do need to be done by even more independent researchers. From what I understand, to be legitimate, these secondary researchers must use the exact same criteria or their research will be flawed. So, if I am understanding this right, will mean they will have to use the patients that meet the same standards.

Now, let's say CDC takes some samples from their own cohorts (Reeve's Disease - by the way, the name was brilliant) and includes WPI samples. And let's say that the WPI samples have the virus infection at 67% and the Reeves Disease have it at 30%. As for antibodies, let's say the WPI have it at 95% and the Reeves Disease folks have it at 40%.

I think this would be a big exposure of the failed definition. And it might turn "CFS" into a truly unknown, possibly psychological illness, and the rest of us will have XAND.

"I'm sorry, I can't make a promise I will be there, my health is uncertain."

"Oh, I'm sorry. I didn't realize you were sick."

"Yes, I have XAND. But I will be there if I can."

"Is that anything like CFS. I heard that is like CFS."

"No, CFS is a term the government has for people who have fatigue and they don't know what causes it. Until XMRV, a virus, was discovered, we used to be told we have CFS. But now they know that many of us actually had this virus."

Then, the conversation goes to what the symptoms are. As Whittemore said, this is a game changer. I have great hopes for this virus. I hope it wipes the slate clean. At this point, it looks like it will.

Mark, I think you bring up some great questions.

Although I do believe this virus may be the most important piece to the CFS jigsaw puzzle, I do feel a little aprehension that the next announcement may not be good. Call it performance jitters, now that we are on stage.

Tina

 

[garcia]

Given that the replication studies will take several months at least to be published, surely we will find out first from our own testing? If enough people here get tested, we should get a pretty good idea of the prevalance of XMRV in the general ME/CFS population, which should in turn give us a better idea of how causative XMRV is.

 

[kurt]

informal test reporting

Given that the replication studies will take several months at least to be published, surely we will find out first from our own testing? If enough people here get tested, we should get a pretty good idea of the prevalance of XMRV in the general ME/CFS population, which should in turn give us a better idea of how causative XMRV is.

That is a good idea, but it will only show prevalance, not causation. To prove cause, someone will have to take PWC who are positive for XMRV, then monitor their XMRV viral load during an anti-retroviral therapy, and compare that with changes in symptoms. That study might be in progress already somewhere, I don't think the researchers here are showing all their cards. This type of research is highly competitive because of the potential rewards from effective therapies.

Even if someone can do that study I just mentioned, it is not complete proof, it would have to be confirmed by several other studies, to rule out other factors. For instance, the anti-retrovirals would have to be very carefully targeted at XMRV, otherwise competing researchers could claim that it was overall viral load reduction that led to the improvements, etc.

 

[cfsme23]

I am pretty confident that most of us on here/those who have proper bonafide ME (eg not Reeves disease) will prove to be XMRV positive but then after I don't know what happens. Maybe I am being over-cautious but what happens if XMRV is present but not the cause per se of ME, do we still then look to treat the XMRV of merely just let it lie and continue with our other forms of treatment.

 

[Eric Johnson from I&I]

> Given that the replication studies will take several months at least to be published, surely we will find out first from our own testing? If enough people here get tested, we should get a pretty good idea of the prevalance of XMRV in the general ME/CFS population, which should in turn give us a better idea of how causative XMRV is.

I think we already know, from the number 98/101, that our friends in Reno will keep getting the same results. What's important is for those results to be attained by others (even though Cleveland and NCI already replicated at least the PCR part).

> Maybe I am being over-cautious but what happens if XMRV is present but not the cause per se of ME

At 98% of patients positive, which is 26.5 times the number of controls positive, it's very likely to be causal. 98 is effectively 100. The two negatives could easily represent an error in diagnosis or in testing.

Though it could happen, *no* agent has ever posted those stats and not been causal -- in any disease. The thing is that the stats aren't really posted yet because they have to be confirmed widely. The paper says Cleveland only did PCR, and I'm pretty sure NCI did same. What we need is for multiple labs to get 98% using all four assays (PCR, viral protein detection, culture of the virus, and serology).

 

[Aftermath]

Your Questions

1) Is Reeves finished ? If he is, Wessely and White must fall here in the UK.

Not yet. But if the Mikovits/WPI study is successfully replicated, he will certainly have one foot in the grave. Whistleblower status or not, a screw up this big is going to get him canned, or at least transferred to another job with similar pay and no responsibilities (he can surf the 'net all day on full pay for all I care). The media attention is just too great.

We'll get Wessley and White eventually and shame them out of existence. Right now, that looks to be about two years away in a best case scenario.

2) Have other lab tests given indications on when their results will be announced, in particular the CDC ?

No, but my guess would be six months to a year. Don't get hung up on those WPI dates. Those included the lengthy time for peer review for getting an original paper published. What we are waiting for is simple replication, and should be much quicker.

I totally disagree with HVS' assertion that that the media is going to back the CDC if they come out with a statement that the work could not be replicated (due to their bogus patient sample). The New York Times has already commented that many people believe that the CDC patient pool is a fraud. Time will tell, but I don't think that they get away with this one if other replicators confirm the WPI work.

3) Where do WPI go from here and what do they plan to do next and when ?

I would like to hear this as well. I'm guessing subsequent studies on causation and treatment.

Andrea Whittemore-Goad just posted on the WPI Facebook page that she is starting treatment on Ampligen (probably through the cost-recovery study aspects, as the FDA has yet to approve it).

4) Do we still believe this is the BIG one ? Are cracks starting to emerge ?

So far, yes. There have been a couple of questions raised about the patient pool and incubation periods. Still, by and large, the train is still rolling.

 

[hvs]

Whistleblower status or not, a screw up this big is going to get him canned, or at least transferred to another job with similar pay and no responsibilities (he can surf the 'net all day on full pay for all I care).

Ha. I like the mage. I agree: a realistic outcome is that he gets moved far, far away from CFS/XAND.

I totally disagree with HVS' assertion that that the media is going to back the CDC if they come out with a statement that the work could not be replicated (due to their bogus patient sample).

I don't mean to suggest that the media will back the CDC. I am saying the fact that the lab used a different sample from the Science study will be located in the last sentence of paragraph four. And they won't mention at all that the experts in the field dismiss the Reeves definition. I am showing my lack of faith in the quality of mainstream journalism.

 

[Eric Johnson from I&I]

I forgot to mention what we will learn from WPI tests -- thanks to Cort's polls -- and that's whether mild cases are as positive (or close) as the severe ones Mikovits published on. This is pretty important.