Nature.com report that Alter paper reviewers want "additional studies"

[Mithriel]

I really, really want to believe.

Mithriel

 

[Angela Kennedy]

Do you think Alter, Mikovits, etc, are not aware of this issue?

Well - I'm presuming Mikovits is. Alter - don't know for sure. The rest of them, the so-called 'neutral' commentators who use the amount of 'negative' studies etc. to insinuate there is something odd about the WPI work etc. etc. don't seem to have a clue!

Sorry- further edit - those producing the 'negative' studies also don't seem to understand these issues either...

 

[Levi]

The Alter Cohort

What is known about the Alter Cohort? I believe the patients come from Dr. Lerner, correct? How many patient subjects are involved? Dr. Lerner is big on using biomarkers to firm up a CFS diagnosis. Were his patients selected using a set of markers? Which markers? Predictive methods used with the markers? If so, they will be a different kettle of fish compared to the CDC cohort.

The main biomarker that Reeves et al uses to diagnose CFS is cortisol, http://www.newswise.com/articles/view/536946
and low cortisol is a biomarker for a CDC diagnosis of CFS. Low cortisol will inversely correlate as a marker for WPI/Lerner patients, so there is not likely to be much overlap in the patient cohorts if there are many other markers are also inversely correlated.

 

[julius]

The main biomarker that Reeves et al uses to diagnose CFS is cortisol

Actually that is not correct. The main Reeves biomarker is ability to answer a telephone.

 

[V99]

ability to answer a telephone.

:tear::tear:

and talk

 

[SOC]

Actually that is not correct. The main Reeves biomarker is ability to answer a telephone.

Julius, you slay me! [wiping away tears of laughter]

I also love the way that 50% of his population-based group never saw a doctor about their symptoms and worked an average of 40 hours a week. (At least I think that's what it said. I'll try to verify.)

Now, that's a representative set of ME/CFS patients. NOT!

EDIT: Here's the ref for the "never saw a doctor" bit. I wasn't too far off.

These CFS cases are different from CFS patients seen in general practice and referral clinics; of the participants from the populationbased study in Georgia, only half had consulted a physician because of their fatigue, about 16% had been diagnosed with CFS, and 75% described an insidious onset to their illness that had no obvious relation to an acute infectious disease

The second bolding in that extract is inconsistent with the report from the Georgia study.

Overall, 2.54% of the study populations had CFS; 83% reported gradual onset and 17% reported sudden onset of their illness.

Dunno what that means. Why would 75% be insidious onset now and 83% later? Perhaps the result of only using some of the 113 cases in the Georgia study. I wonder how they selected which cases from the Georgia study they used in the XMRV study. Didn't find that before my head exploded.

As for the working full time part (greyed out), I can't find where I got that, a nightmare, probably. Sorry for the misinfo.

 

[Sam Carter]

What is known about the Alter Cohort? I believe the patients come from Dr. Lerner, correct? .....

Interesting. Do you have a citation?

 

[anciendaze]

Actually that is not correct. The main Reeves biomarker is ability to answer a telephone.

Good one! But, there is a real issue here that may be overlooked.

We have a parallel case where XMRV is hard to detect in prostate cancer. Now, try the following thought experiment.

You ignore reports from clinicians who have contact with patients and believe they suffer from a serious illness as obviously biased. You use random dialing to locate people who believe they might have prostate cancer, but do not have a confirmed diagnosis. You bring them in for examination by clinicians you control. Any with clear physical signs of illness are excluded from your cohort.

Now, what conclusion will you reach concerning prostate discomfort syndrome?

 

[Angela Kennedy]

Good one! But, there is a real issue here that may be overlooked.

We have a parallel case where XMRV is hard to detect in prostate cancer. Now, try the following thought experiment.

You ignore reports from clinicians who have contact with patients and believe they suffer from a serious illness as obviously biased. You use random dialing to locate people who believe they might have prostate cancer, but do not have a confirmed diagnosis. You bring them in for examination by clinicians you control. Any with clear physical signs of illness are excluded from your cohort.

Now, what conclusion will you reach concerning prostate discomfort syndrome?

Oh, VERY nice analogy AD.

 

[Levi]

The source . . .

For my preliminary assumption about this is someone using the handle IanH commenting in a Prohealth article about the leak by Dutch Journalists:
http://www.prohealth.com/library/showarticle.cfm?libid=15431

I have nothing more to offer. Thats why I am putting this question out here.

Interesting. Do you have a citation?

 

[Tembo]

I don't know what they know, and I don't know much about science. But I can feel a tidal wave- and when it picks up speed no one or no thing can stop it.

At this point it doesn't matter how neurotic we are painted- it's not about us. It's about science. And there's a battle brewing that will not be settled on our dispositions.

From what I've read, Alter is a powerhouse- and I cannot imagine a man of his acclaim allowing his work to be discarded or himself bullied.

If he found something- and it seems he did- he will have to fight to expose the truth, if not for science, than for his own reputation and Ego.

And then there's the WPI- they've got their teeth into this and they're not stopping. They didn't get this far to be intimidated. Not gonna happen.

Annette Whittemore is fighting for her daughter- no mother- especially that one- will let this go down like that- not after the road she's traveled.

The truth WILL come out- I'm sure of it.

If you want inspiration- just look to those two Dutch journalists who singlehandedly forced this issue. There will be more like that to come- The word is out and the door is slowly opening.

Each exposure only emboldens others to expose the truth and keep pushing. Add the WSJ reporter (Marcus) to the mix and you see where this is going.

No coverup will last- Not with a Nation's Blood Supply hanging in the balance.

You think the pressure is on us- It's not.

The pressure is on them.

You just totally made my day RecoverySoon - thank you:Retro smile:

 

[Hope123]

For my preliminary assumption about this is someone using the handle IanH commenting in a Prohealth article about the leak by Dutch Journalists:
http://www.prohealth.com/library/showarticle.cfm?libid=15431

I have nothing more to offer. Thats why I am putting this question out here.

The quote from that link by IanH is merely stating that Lerner's subjects should be tested for XMRV but it makes no statement and doesn't seem to be trying to make any statement by the Alter cohort being drawn from Lerner's patients.

Martin Lerner's blood samples from their cohort should be tested for XMRV before and after treatment. If the people who were successfully treated have XMRV in their blood after successful treatment, what does this tell us about XMRV's or the Herpes virus' role in CFS. Aslo would be useful to know what the active Herpes viridae loads are in those WPI and now NIH samples tested for XMRV.

 

[thegodofpleasure]

Let's keep to the facts

What is known about the Alter Cohort? I believe the patients come from Dr. Lerner, correct? .................. If so, they will be a different kettle of fish compared to the CDC cohort.

The main biomarker that Reeves et al uses to diagnose CFS is cortisol, http://www.newswise.com/articles/view/536946
and low cortisol is a biomarker for a CDC diagnosis of CFS. Low cortisol will inversely correlate as a marker for WPI/Lerner patients, so there is not likely to be much overlap in the patient cohorts if there are many other markers are also inversely correlated.

Thanks for the observation Levi, but I have to disagree with your assumption that the CDC cohort had low cortisol.
From what I can see there is no evidence to support that assertion at all.

As far as Dr. Alter's cohort is concerned, we have no information and so IMO, it's pointless (unhelpful) speculating / starting unfounded rumours.


TGOP

 

[glenp]

Criteria

In the Switzer et al (2010) study on XMRV and CFS, one or more CFS patients scored 100 (out of 100) on the SF-36 physical functioning scale.

That means they answered "No, not limited at all", to all of the questions below (the questions below are the questions for the physical functioning subscale: basically "Yes, Limited A Lot" gets you 0 points for that question; "Yes, Limited A Little" gets you 5 and "No, not limited at all" gets you 10 so scale is 0-100).

Extract from Switzer et al (2010) study paper:
SF-36 physical functioning 65.5, range 10-100
This average score is higher than you generally see in CFS studies.

Leonard Jason previously noted this problem in:
5. Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's
empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies
2009;20;93.

Leonard Jason et al gave an example of a woman with major depressive disorder who didn't have CFS satisfying the empiric criteria despite having a SF-36 PF score of 100
SF-36 physical functioning questions

4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
(check one on each line) ACTIVITIES

Yes, Limited A Lot

Yes, Limited A Little

No, Not Limited At All

a. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
?? 1
?? 3
?? 5

b. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
?? 1
?? 3
?? 5

c. Lifting or carrying groceries
?? 1
?? 3
?? 5

d. Climbing several flights of stairs
?? 1
?? 3
?? 5

e. Climbing one flight of stairs
?? 1
?? 3
?? 5

f. Bending, kneeling, or stooping
?? 1
?? 3
?? 5

g. Walking more than a mile
?? 1
?? 3
?? 5

h. Walking several blocks
?? 1
?? 3
?? 5

i. Walking one block
?? 1
?? 3
?? 5

j. Bathing or dressing yourself
?? 1
?? 3
?? 5

 

[Stone]

I was extremely upset when the papers were held up and then only the negative CDC paper was published, but the more I think about it, the more sense it makes to hold the Alter paper for 'additional studies' to be done AND ALSO to go ahead and let the CDC publish that smelly load in their pants they call a study. This gives Alter the time (opportunity, actually) to shine a light on the gross incompetence of the CDC in his own paper by making it very plain by sound science just how the CDC blew it. Maybe this 'strategic pause' is just that. Alter now has the opportunity to add to his paper some potentially damning data demonstrating that the CDC is literally trying NOT to find XMRV, but put in terms of the factual language of science, naturally. After all, how do we know the WPI hasn't just sent Alter a set of those same 20 positives (that they previously sent to the CDC who never mentioned them in their paper) to play with and write about? Or better yet, what if Alter could actually find XMRV in even just ONE of the samples used in the CDC study? It would be great, wouldn't it? But I suppose I'm in Wonderland on that one. Still, it's possible that the DHHS isn't happy with the CDC for not doing their job, and playing dangerous games with the nation's blood supply. Just because they're both government health agencies doesn't mean they agree. Could it be that they held both studies and actually read them, and read the other related studies, and read other things such as the statements from the WPI about why the negative studies didn't find XMRV? They're scientists too, aren't they? They can read just like we can. I can see the FDA, NIH, DHHS and even PNAS and maybe Alter himself thinking, "Let's flesh out this paper with some data that would blast the CDC out of the water." After all, as noted previously in this thread, there are more than a few very highly respected scientists who seem to be able to find XMRV in BOTH the normal controls AND in true CFS patient cohorts. If I'm not mistaken, the negative studies didn't find XMRV in sick people or normal controls, which says something if you're paying attention. It would be another thing entirely if they found XMRV in CFS at the same rate as the controls, but that's not the case in most of the negative studies I'm aware of. Isn't it possible that there are others besides ourselves (and the rare doctor/scientist here and there) who are fully aware of the perverse games the CDC has been playing for over 25 years when it comes to CFS? What if they actually do realize that XMRV isn't just about 'those neurotic CFS people', but it's also about prostate cancer, too, and dear God, what if it really is a causal factor in autism, subsets of MS, maybe fibromyalgia and who knows what else? If they are allowing Alter a chance to utterly trump the CDC (which is thought to have the definitive answers to everything disease-related), then whoever publishes THAT PAPER would be super alpha top dogs in the science world and in medical history. It's a golden opportunity for them, isn't it? It would be a shame for them to miss a chance like this by letting the Alter paper go to print without addressing (directly or indirectly) how badly the CDC has bungled this, particularly given the sobering statistics on how many healthy-so-far controls are turning up positive for this novel disease-causing human retrovirus, would it not? Yes, I know this isn't how science is supposed to work, and it's probably not what's actually going on, but wouldn't it be something if it were? And besides, nothing about CFS, the disease itself , nor it's history, nor the way it's been handled by some scientists in the past, nor the way it's been handled by the government is anything like it's supposed to be, so why should all of that suddenly stop now? :headache:

 

[taniaaust1]

Remember that by making extraordinary demands of Lombardi and Mikovits, Science made their paper incredibly water-tight.
This could be exactly what happens here. The paper only becomes more of definitive home run that moves this discussion into a new phase and halts the silly negative studies based on bogus cohorts and collection/lab techniques.

im quite worried but really hope that is the case.

 

[taniaaust1]

i can see there is only 3 possibilities (let me know if there is a 4th)

1/ "They are sticking with the CDC paper = they WANT it to be the more accurate one" (as quoted by Recovery Soon)
2/ "They are sticking with the CDC paper = they believe its the more accurate one". (cort)
or 3/ They are sticking with the CDC paper, they believe it to not be accurate but wanted it published first. eg using it as a delaying tactic while they put other things in place.

One of these 3 has to be correct.

So are they in denial, are they grasping at straws or are they just trying to hide something.

 

[taniaaust1]

This morning the Patient Advocate blog said that the NIH research people are being asked to test the CDC samples (the ones designed to NOT have XMRV in them - with ridiculous cohort, wrong test tubes, and whatever else).
http://cfspatientadvocate.blogspot.com/
I don't know what his source is for this, but it does worry me. I fear the CDC using these shenanigans to try to dilute or weaken the powerful findings of the NIH/FDA paper.

Interesting.. there if there is actually no XMRV to be found in those CDC studies (cause they killed the virus or whatever).. would this then mean that these samples will get added to the testing the NIH already did.. hence adding the CDC samples to there own and hence then lessening the percentage of the all up outcome?

 

[alex3619]

Hi Stone

This is essentially the optimist view that I have discussed elsewhere (including live voice chat outside of PR). It could easily be right, and gives us a view that will be completely to our benefit, restoring our faith in the DHHS. The pessimistic views aren't disproven yet either. Either way, when the Alter paper is released, and discussion commences, we will have our answer.

Bye
Alex

I was extremely upset when the papers were held up and then only the negative CDC paper was published, but the more I think about it, the more sense it makes to hold the Alter paper for 'additional studies' to be done AND ALSO to go ahead and let the CDC publish that smelly load in their pants they call a study. This gives Alter the time (opportunity, actually) to shine a light on the gross incompetence of the CDC in his own paper by making it very plain by sound science just how the CDC blew it.

 

[alex3619]

Hi Tania,

There is a variant to 3 that is part of the optimist view. The DHHS have finally realized how problematic the CDC research is, wanted them to publish, and are now setting things up to discredit the CDC prior to investigating their problems.

Bye
Alex

i can see there is only 3 possibilities (let me know if there is a 4th)

1/ "They are sticking with the CDC paper = they WANT it to be the more accurate one" (as quoted by Recovery Soon)
2/ "They are sticking with the CDC paper = they believe its the more accurate one". (cort)
or 3/ They are sticking with the CDC paper, they believe it to not be accurate but wanted it published first. eg using it as a delaying tactic while they put other things in place.

One of these 3 has to be correct.

So are they in denial, are they grasping at straws or are they just trying to hide something.