• Phoenix Rising needs funds to operate: please consider donating to support PR

Information on the Science CFS Cohort - Inclusion of Cancer Patients?

natasa778

Senior Member
Messages
1,774
Likes
2,451
NEW info: WPI statement on Science study cohort

JUST POSTED ON WPI FACEBOOK PAGE:

Here are few facts about the patient samples used in the WPI Science study.

No patient samples were used from Dr. Peterson's original repository in the Science XMRV study.

All of the samples used in the Science study were donated to the WPI between 2006 and 2009 by physician diagnosed CFS patients based on the Fukuda a...nd Canadian Consensus definitions. Patient samples were coded and randomly chosen from the WPI repository freezer.

Samples from this study are from CFS patients who come from all over the United States and many from around the world to be treated by CFS doctors.

When Dr. Mikovits later discussed the many CFS cancer patients positive for XMRV, she was referring to additional work that had been done after the paper was submitted for publication.

--
Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
 

garcia

Aristocrat Extraordinaire
Messages
975
Likes
247
Location
UK
No patient samples were used from Dr. Peterson's original repository in the Science XMRV study.

When Dr. Mikovits later discussed the many CFS cancer patients positive for XMRV, she was referring to additional work that had been done after the paper was submitted for publication.
In yo' face Vinnie Jones!

Many thanks for that natasa. I hope the naysayers will be satisfied with that decisive rebuttal from Annette Whittemore.
 

Lesley

Senior Member
Messages
188
Likes
4
Location
Southeastern US
WPI posted the following info regarding the Science cohort on Facebook:

Here are few facts about the patient samples used in the WPI Science study.

No patient samples were used from Dr. Peterson's original repository in the Science XMRV study.

All of the samples used in the Science study were donated to the WPI between 2006 and 2009 by physician diagnosed CFS patients based on the Fukuda a...nd Canadian Consensus definitions. Patient samples were coded and randomly chosen from the WPI repository freezer.

Samples from this study are from CFS patients who come from all over the United States and many from around the world to be treated by CFS doctors.

When Dr. Mikovits later discussed the many CFS cancer patients positive for XMRV, she was referring to additional work that had been done after the paper was submitted for publication.

--
Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
Unfortunately, they still haven't dealt with the matching patient numbers.

Someone has started a discussion of this on another thread: http://www.forums.aboutmecfs.org/showthread.php?3645-NEW-info-WPI-statement-on-Science-study-cohort&p=54900&posted=1#post54900 Administrators - could these threads be merged?
 
G

Gerwyn

Guest
I wonder if someone else has confused these labels did they select from a wider cohort
 

rebecca1995

Apple, anyone?
Messages
378
Likes
232
Location
Northeastern US
Lesley wrote,
Here are few facts about the patient samples used in the WPI Science study.
In the comments following that post on the WPI Facebook page, someone implied that the WPI had already posted information about the patient ID numbers. The person continued, "[The WPI] changed the numbers frequently (6 times I think was what they posted) in order for people to remain anonymous from the study."

I don't remember seeing an earlier post on ID numbers, but it might be worth searching their pages.
 

Anika

Senior Member
Messages
148
Likes
29
Location
U.S.
Changing vs reusing patient numbers

Thanks for posting your results from searching Facebook, charityfundraiser.

Certainly it would be understandable if WPI changed ID numbers to protect patient privacy. I'm not sure even published scientific papers would need to be consistent in using the same numbers from paper to paper - but they would probably need to avoid re-using the same number sequences in order to avoid confusion.

So, patient 1234 might become patient VR2932 in a later publication. That would be fine, but number 1234 would not be re-used as a number for a different patient.

It's still not clear whether the Science cohort included the cancer patients Dan Peterson identified in his CFSAC slide. I hope WPI will clarify this officially within the next week. Maybe it will come out with results from other XMRV studies.

Anika
 

natasa778

Senior Member
Messages
1,774
Likes
2,451
Anyways, thanks, good to know I'm not the only one seeing that a straightforward answer to the question is still missing.
What difference would it make? Would the fact that that those few had cancer 'un-diagnose' their CFS? What difference would it make to the Science study if several of CFS cohort are 'disqualified' from CFS?
 

Lesley

Senior Member
Messages
188
Likes
4
Location
Southeastern US
Rebecca 1995 wrote:
In the comments following that post on the WPI Facebook page, someone implied that the WPI had already posted information about the patient ID numbers. The person continued, "[The WPI] changed the numbers frequently (6 times I think was what they posted) in order for people to remain anonymous from the study."
Charity Fundraiser wrote:
I did not see any mention of 6 times and I thought I combed the posts pretty anally. I had seen a comment from Andrea under her name, not WPI name, on the CAA note that they changed the numbers, but I did not get the sense that that was an official answer and it was in the midst of some really ugly emotional barrage of posts. Recently she said she couldn't answer my question and directed me to Mrs. Whittemore, so I guess I'll have to ask over e-mail.
Anika wrote:
Certainly it would be understandable if WPI changed ID numbers to protect patient privacy. I'm not sure even published scientific papers would need to be consistent in using the same numbers from paper to paper - but they would probably need to avoid re-using the same number sequences in order to avoid confusion.

So, patient 1234 might become patient VR2932 in a later publication. That would be fine, but number 1234 would not be re-used as a number for a different patient.

It's still not clear whether the Science cohort included the cancer patients Dan Peterson identified in his CFSAC slide. I hope WPI will clarify this officially within the next week. Maybe it will come out with results from other XMRV studies.
Here was the CFIDS Association's reply on their Facebook page to Andrea's claim that the numbers were changed repeatedly, and that revealing them was somehow a breach of privacy:

All the information is available to the public as cited. If numbers were changed, this goes against the procedures generally used to report data from scientific studies
I have no idea what the procedures are, but there has been no formal response to this question from WPI.
 

rebecca1995

Apple, anyone?
Messages
378
Likes
232
Location
Northeastern US
charity wrote:
Firstly, I just want straightforward answers to straightforward questions. In general, if people just answer questions straightforwardly, then we move on.
I'm not sure it should be as simple as people lobbing criticisms and questions at the WPI and the WPI automaticallly responding.

Dr. Vernon's analysis of the Dutch study was, in my view, snarky and bizarrely gloating. I personally don't think the WPI should capitulate to the demands of her public scolding, which also included an endorsement of the Oxford Criteria and an inappropriate elevation of the negative studies' methods.

Dr. Vernon apparently wants the WPI to publish more info on the Science cohort's positive tests, writing,
The Science papers supplement refers to a variety of abnormalities without defining how they were measured or how uniformly they show up among the patients whose samples are stored there.
But why should the WPI hand over that information, when at least two of the negative studies to date have explicitly rejected patients with abnormal medical results? Wessely's study, which supposedly used Fukuda, said outright its cohort didn't have abnormal tests, and the Dutch study used Oxford, which likewise excludes such patients. So why would it matter if, say, low VO2 max occurs in 10% or 100% of those being studied? Why do the details of RNase-L dysfunction matter, when no one with such dysfunction was included in the other studies?

The way for the WPI to handle such issues is to provide, in their next published study on XMRV, more detailed information about the new cohort--including whether some participants have cancer as well as ME/CFS. Personally, it doesn't bother me if a few patients in the Science cohort did develop cancer. Finally we have an institute looking at the "sickest of the sick", as Dr. Mikovits called them in an October interview, rather that focusing on the very select group that is the subject of Wessely and company's CB"T" and GE"T" studies.
 

Mithriel

Senior Member
Messages
688
Likes
822
Location
Scotland
Sorry if this is controversial, but I would rather the WPI concentrated on doing new science, new studies, rather than answer questions about something already refereed and published. I don't care about how many of the original cohort had cancer or the exact details of the tests done on them. We know they had abnormalities that the biopsychosocial school eliminated from their studies, so they are more likely to have CFS rather than just fatigue.

I want to see the next paper published.

Mithrel
 
G

Gerwyn

Guest
Sorry if this is controversial, but I would rather the WPI concentrated on doing new science, new studies, rather than answer questions about something already refereed and published. I don't care about how many of the original cohort had cancer or the exact details of the tests done on them. We know they had abnormalities that the biopsychosocial school eliminated from their studies, so they are more likely to have CFS rather than just fatigue.

I want to see the next paper published.

Mithrel
I agree entirely
 

garcia

Aristocrat Extraordinaire
Messages
975
Likes
247
Location
UK
Sorry if this is controversial, but I would rather the WPI concentrated on doing new science, new studies, rather than answer questions about something already refereed and published. I don't care about how many of the original cohort had cancer or the exact details of the tests done on them. We know they had abnormalities that the biopsychosocial school eliminated from their studies, so they are more likely to have CFS rather than just fatigue.

I want to see the next paper published.

Mithrel
Well said Mithriel! The naysayers will never be happy. The important thing now is replication. Onwards and upwards!
 
G

Gerwyn

Guest
I bake a cake with flour having certain characteristics using a particular recepie.

I publish the method for baking the cake.

Those reading my recepie choose to use totally different flour and dont follow the rest of the recepie at all.

The cake does not turn out at all well.So they blame me for not telling me where I got the flour from !!!!!
 

rebecca1995

Apple, anyone?
Messages
378
Likes
232
Location
Northeastern US
Great cake analogy, Gerwyn!

Charity, you pointed out a number of questions that were not raised by Dr. Vernon.

Here are some more that she should have raised--and directed to the European groups:

How many of your cohort had psychiatric co-morbidity such as major depression or anxiety? What psychometric tests were used to measure it? What were the exact scores on these tests? How long had they been depressed? What is the evidence that your cohort's fatigue was not caused by major depression? Did even four members of your cohort suffer from major depression?

By asking these, Dr. Vernon would have applied the same tough standard to the negative studies that she's applying to the positive one. It'll help researchers design studies if they know the features of the XMRV-negative cohorts as well as the positive cohorts

It bothers me that Dr. Vernon didn't bat an eye at probable psychiatric co-morbidity, but is raising cain at possible oncologic co-morbidity.
 

Andrew

Senior Member
Messages
2,375
Likes
3,235
Location
Los Angeles, USA
Two other things. My understanding is that Peterson's CFSAC meeting presentation covered more than what was part of the Science study. So it cannot be assumed that every slide tidbit of information there was part of the study or even the sample. It is also my understanding that samples were blinded during research, and they only decoded some of the patient information after the study. And maybe they are leaving it coded so it can remain blind in other checks. And/or, the sources of the samples might not have certain information.
 
G

Gerwyn

Guest
Great cake analogy, Gerwyn!

Charity, you pointed out a number of questions that were not raised by Dr. Vernon.

Here are some more that she should have raised--and directed to the European groups:

How many of your cohort had psychiatric co-morbidity such as major depression or anxiety? What psychometric tests were used to measure it? What were the exact scores on these tests? How long had they been depressed? What is the evidence that your cohort's fatigue was not caused by major depression? Did even four members of your cohort suffer from major depression?

By asking these, Dr. Vernon would have applied the same tough standard to the negative studies that she's applying to the positive one. It'll help researchers design studies if they know the features of the XMRV-negative cohorts as well as the positive cohorts

It bothers me that Dr. Vernon didn't bat an eye at probable psychiatric co-morbidity, but is raising cain at possible oncologic co-morbidity.
it really bothers me too she is being incredibly one eyed in this matter.

and i cant understand why

your questions are those that anyscientist would ask but she is not asking them
 

rebecca1995

Apple, anyone?
Messages
378
Likes
232
Location
Northeastern US
catch wrote,
All excellent questions, but I'd also add, what proportion of the patients were cured of their fatigue symptoms after treatment by CBT? Are patients who can be cured by a psychological therapy likely to have an active retrovirus?
Great catch, catch! And it just goes to show that we have a lot more information about the Science cohort than we do about the European cohorts.
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,604
Location
London
From the WPI facebook page (posted today 20/3/10)

(from the WPI) The Whittemore Peterson Institute has recently answered questions for Science magazine. Look for Dr. Mikovits answers in next months print edition to research questions regarding the October publication in Science.
 

parvofighter

Senior Member
Messages
440
Likes
129
Location
Canada
WPI's Science study responses?

Not sure if these are the formal responses in Science. This was posted this afternoon on WPI's Facebook site. Here's an excerpt:

From: http://www.facebook.com/notes.php?id=154801179671
XMRV Testing Facts

Questions about the Science study.
Why did scientists have to use four methods to detect XMRV in the Science study to be absolutely sure that a sample was positive or negative for XMRV?
If one carefully studies the data presented in the Science paper one would see that patients can be negative by some methods and positive by others.

Where did the patient samples used in the Science study come from?
Samples used in the study came from several medical practices and from patients who became ill while living in many different locations around the United States.

Did all of the samples come from patients who were physician-diagnosed with CFS?
Yes.

Did any of the samples used in the original study come from patients who ultimately developed cancer?
Yes, one.


How were the samples chosen?
All of the patients/samples used in the study were chosen randomly on the basis of a CFS diagnosis from more than 200 patient samples stored in the WPI repository since 2006. No one knew the status of the patients as all samples were blinded. None of the samples came from the original repository of samples owned by Dr. Peterson.


What work was done after the May 2009 submission of the Science paper?
After the study was submitted, samples from CFS patients who also developed cancer were tested and found to be positive for XMRV. These results were reported at a private meeting of cancer researchers interested in XMRV. (A positive finding was not surprising, since retroviruses are known to cause cancer.).

Similarly, samples from families with autism and CFS were tested and XMRV was detected in samples from autistic children. Research on immune defects in XMRV infected patients have also been studied and reported at scientific meetings.

Now are these the same responses that will be published in Science? I'm not sure. Anyone?

So.... about those allegations of masses of cancer patients in the Science study....:Retro wink: