April 7/8 NIH State of Knowledge Conference - watch online to show our support!

[heapsreal]

WHo's this Leonard jason guy, he seems to know what he's talking about. Good to hear someone like him talking.

 

[WillowJ]

Lenny Jason has been around a long time. As you say, does know what he's talking about and truly one of the good guys. He's a psychologist with DePaul University. Attends the CFSAC meetings.

His team writes a lot about definition (always very good) and name (showing that the title of CFS is indeed hampering the perception of the disease as serious among medical personnel). Has a paper analyzing the memorial list, and reportely a new mortality paper coming out.

Published a paper demonstrating that the Reeves criteria includes primary affective disorders instead of CFS and noting that the incidence of "CFS" saw a 10-fold jump coincidentally with the intruduction of this rubric, and the new prevalence approximates that of "mood" disorders. In fact, 38% of those with MDD qualify as having CFS under Reeves. This is in a Disability Studies journal, but is amusingly not indexed on PubMed.

Also published an important paper comparing pacing, anaerobic exercise, stretching, relaxation.

 

[Ernie]

If he wants to leave XMRV behind, why is he doing a study? In this case the only reason for doing that study could be to disprove the association between XMRV and ME/CFS. Should you really do a study, if you're not objective?

By the way are we really sure that the WPI is participating in this study? I think that was the "Maldarelli" study he was talking about there.

I think it is.

 

[Ernie]

What the ... is wrong with this guy Coffin?? He seriously said "We should leave this virus that we know as XMRV behind"... I can't believe what i just heard. It's true that it could just be a contaminant, even though i don't find that possibility likely, but how could anyone of his intelligence say this? If there's the possibility that this virus could be in the population and the blood supply and causing a number of diseases including cancers??? Before it's proven that there was contamination i think "leaving XMRV behind" and just hoping it will go away if you don't look at it is beyond negligent...

I think he may have been thinking out loud. He changed his position later in that conversation. Explaining how others are still working on XMRV including Lipkin and the BWG. But managed to say that his NCI study will be out soon. I can bet what that will find.

 

[Ernie]

Maybe he seems a bit "strange" beacuse he was having a cold (i think i read that).

But when i look at this video http://www.youtube.com/user/vikwalk#p/u/2/b-1K7i4Sjvs, i will make it official and say i don't trust him. Maybe that's not a smart thing to say and i had a pretty hard day because i was in the coach for hours, but that's the feeling i get when i see him speak there. And he should not be so aggressive. He is acting like someone who thinks when he says it's over, it's over. Sorry John, but that's not the case.

Maybe it was the cough syrup.

 

[heapsreal]

i think coffin is backed into a corner with people around him alot more knowledgable then he will ever be on the subject. he was poopin his pants, lol, with mass hysteria!!

 

[liquid sky]

There's a reason they want this event to have a date attached to it. It's to protect someone's liability. Mislead, confuse the facts and hope XMRV just goes away. I'm afraid it was a little too obvious. I absolutely could not stand the disdain that Coffin showed towards Mitkovis. He talked over her and refused to let her speak much at all. I sure hope the real truth will stand up some day.

On the other hand, I thought I heard 2 Japanese studies that sounded promising.I also thought one guy stated something about cannabis receptors in the brain being involved? Did I imagine that? Something about in California they could bring the medicine to your house?

My body woke up at noon today and my mind woke up about 3pm.

 

[liquid sky]

Oops. Just read the rest of the thread. Sorry for any repeats of thought. I see I wasn't imagining the medical marijuana.

 

[LJS]

There's a reason they want this event to have a date attached to it. It's to protect someone's liability. Mislead, confuse the facts and hope XMRV just goes away. I'm afraid it was a little too obvious. I absolutely could not stand the disdain that Coffin showed towards Mitkovis. He talked over her and refused to let her speak much at all. I sure hope the real truth will stand up some day.

Huh?? How are people coming to these conclusions, I sometimes feel like I am on another planet. His reason to mislead and confuse the facts about XMRV in hopes that it would go away would be for what? He started studying it for the same reason everyone else started studying it because it sparked his interest, not to setup a super secrete government conspiracy to keep CFS patients sick. This has gotten so ridiculous that he had to make a comment about it. http://www.youtube.com/watch?v=b-1K7i4Sjvs

i think coffin is backed into a corner with people around him alot more knowledgable then he will ever be on the subject. he was poopin his pants, lol, with mass hysteria!!

I thought he made some compelling arguments against XMRV.

 

[heapsreal]

Huh?? How are people coming to these conclusions, I sometimes feel like I am on another planet. His reason to mislead and confuse the facts about XMRV in hopes that it would go away would be for what? He started studying it for the same reason everyone else started studying it because it sparked his interest, not to setup a super secrete government conspiracy to keep CFS patients sick. This has gotten so ridiculous that he had to make a comment about it. http://www.youtube.com/watch?v=b-1K7i4Sjvs


I thought he made some compelling arguments against XMRV.

My comments come from the fact that he states contamination and when klimas said to him if contamination was a problem wouldnt the healthy controls have a high level of xmrv too. He dribbled off on a different tangent.

i rest my case.

 

[LJS]

My comments come from the fact that he states contamination and when klimas said to him if contamination was a problem wouldnt the healthy controls have a high level of xmrv too. He dribbled off on a different tangent.

i rest my case.

A few months ago there was some in depth discussion about how this happened in the past, I can not remember the name of the researcher or the study. What happened there was the patient samples were handled more then the healthy control samples which in turn contaminated the patients samples at a higher rate.

My main concern with XMRV is that a large majority of scientist can not replicate the WPI findings and some incredibly intelligent researchers with all the right intentions have tried and failed. So where does that leave us; we can not cling to the idea that XMRV is there and the cause of our illness because Dr. Mikovits says so. We have to look at the data for what it is and be open to the idea that maybe the WPI in not in fact finding real XMRV in humans and is finding a containment or something other then XMRV. We also can not demonize and sling all these personal attacks at researcher that find something different then what Mikovits finds, they are people too and just look at the data differently. It is the normal path of how science works a problem and part of the process.

 

[heapsreal]

but there are others who have replicated the studies. Even in germany they found it in respiratory droplets, i dont know if this particular study has been replicated but it shows how others are finding it. It also depends on the type of patients they are picking, are they picking patients who just have depression as thats what alot of the CDC think cfs is. I think they should pick patients with poor nk function and other immune abnormalities, nk function is a common one, so i dont know why this isnt used as well.

 

[LJS]

but there are others who have replicated the studies. Even in germany they found it in respiratory droplets, i dont know if this particular study has been replicated but it shows how others are finding it. It also depends on the type of patients they are picking, are they picking patients who just have depression as thats what alot of the CDC think cfs is. I think they should pick patients with poor nk function and other immune abnormalities, nk function is a common one, so i dont know why this isnt used as well.

The upcoming BWG study and other future studies that funding has been dedicated to will attempt to answer this question by consolidating all the variables. Collecting all the blood at the same time, in the same tubes, and process them from start to finish fully blinded. If the WPI and NIH can not pick out XMRV in this setup it is highly probably they are not finding XMRV and something else is going on for example contamination. Until these studies are completed we really have no way of knowing what is going on but the arguments for contamination make valid points that must be taken seriously.

 

[dannybex]

"Six studies, with thousands of patients..."

What is Dr. Mikovits referring to in this clip (at 7:40 in) when she talks about 'at least six studies with thousands of patients from around the world'?

http://www.youtube.com/watch?v=Dktu4RR5QEU&feature=channel_video_title

I'm not exactly up to speed (in more ways than one), but haven't most of the studies involved small numbers of patients/controls? Is she perhaps talking about unpublished studies?

Thanks in advance.

d.

p.s. Also, it seems like Coffin hasn't completely ruled out a retroviral link...he's just not sure about 'the virus we know as XMRV'.

He goes on to say, "enough evidence has been presented that there is some infectious cause here and maybe another retrovirus is possible and it's worth continuing to do it..."

 

[Kate_UK]

My main concern with XMRV is that a large majority of scientist can not replicate the WPI findings....

I thought there had not been any replication study yet?

the arguments for contamination make valid points that must be taken seriously

I didn't feel that the arguments against contamination were really answered by Dr Coffin. Maybe I missed something.

 

[eric_s]

I think in one of the videos from the XMRV workshop last September Coffin said he thinks we can be pretty confident about XMRV playing a role in ME/CFS, only that he's a bit worried about how easily PCR can lead to false positives. Now he said it should be left behind.

I don't understand what's going on but i don't like it and it's even pretty scary. This should be about science and the truth and besides that it's about something as irrelevant as the health of the human race and what we mostly see is people fighting each other in such a way that at least to me it seems as if they basically care about their own career, their own interest. * that.

If i look at the Coffin video it feels like a gathering of Mafia capos where everybody is making plans how to kill the others and get control of the whole thing.
I don't want that sort of mentality deciding my fate.

If Coffin turns out to be wrong, he certainly has done a lot of damage to his reputation. Would he take such a risk? I don't know. But even though i'm no scientist i think there's a lot that his hypothesis can't explain. What about the sequences Lo and Alter have found, for example? Can they be explained by recombination of preXMRV1 and preXMRV2?

Many people say that XMRV is losing interest of researchers, but just look at all the XMRV-related events... University of Alberta, NYAS, this workshop... all in a couple of weeks. It does not look dead at all at this moment.

 

[Sasha]

The original link to the agenda now just leads to a page with an error message on it. Did anyone get a copy of the agenda for today that they could post?

 

[Kate_UK]

Agenda here https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

 

[eric_s]

I haven't reloaded the page yet, so i still have it on:

DAY 2 FRIDAY, APRIL 8

7:00 8:00 a.m. REGISTRATION
8:00 8:15 a.m. RECONVENE

DIAGNOSIS AND BIOMARKERS
NIH Moderator: Donald G. Blair, Ph.D., National Cancer Institute, NIH
Co-Moderator: Samir Khleif, M.D., National Cancer Institute, NIH

8:15 8:35 a.m. Nancy Klimas, M.D., University of Miami, Miller School of Medicine
Immune Based Biomarkers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

8:35 8:55 a.m. Dane B. Cook, Ph.D., University of Wisconsin, Madison
Can Functional Neuroimaging Data Serve as a Biomarker for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

8:55 9:15 a.m. Michael Dean, Ph.D., National Cancer Institute, NIH
Identifying Genes and Genetic Risk Factors for Complex Diseases

9:15 9:35 a.m. Summary and Panel Discussion

TREATMENT

NIH Moderator: Christopher Mullins, Ph.D., National Institute of Diabetes and Digestive and Kidney Diseases, NIH
Co-Moderator: Susan Keay, M.D., Ph.D., University of Maryland School of Medicine; and Veterans Administration Maryland Health Care System

9:35 9:40 a.m. Session Overview

9:40 10:00 a.m. Fred Friedberg, Ph.D., State University of New York, Stony Brook
Self-Management in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Meaning of "Improvement"

10:00 10:20 a.m. Italo Biaggioni, M.D., Vanderbilt University
Chronic Fatigue and Postural Tachycardia Syndromes

10:20 10:35 a.m. MORNING BREAK

10:35 10:55 a.m. Theoharis C. Theoharides, M.D., Ph.D., M.S., F.A.A.A.A.I., Tufts University School of Medicine Substance P-Stimulated TNF Secretion from Human Mast Cells Involves Fission and Translocation of Mitochondria with Extracellular DNA Release That Induces Auto-Inflammation, Processes Blocked by the Natural Flavonoid Luteolin

10:55 11:15 a.m. Lucinda Bateman, M.D., Fatigue Consultation Clinic, Salt Lake City
Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the Fatigue Consultation Clinic: The Art of Supportive Care Medicine

11:15 11:45 a.m. Summary and Panel Discussion

11:45 a.m. 1:00 p.m. LUNCH

OPPORTUNITIES FOR COMMUNICATION (A Panel Discussion)
NIH Moderators: John T. Burklow and Marin P. Allen, Ph.D., Office of Communications and Public Liaison, NIH

1:00 1:05 p.m. Session Overview

1:05 1:15 p.m. K. Kimberly McCleary, CFIDS Association of America
Communicating with Research Stakeholders

1:15 1:25 p.m. Kenneth J. Friedman, Ph.D., Castleton State College
Elephants in the Room: Acknowledging Impediments to Chronic Fatigue Syndrome Research and Education

1:25 1:40 p.m. Patricia Fero, M.E.P.D., Wisconsin ME/CFS Association, Inc.
3 Generations: A View from Wisconsin
Mary M. Schweitzer, Ph.D., MCEAS, University of Pennsylvania
The Role for Internet in Communication

1:40 1:50 p.m. John T. Burklow, Office of Communications and Public Liaison, NIH

1:50 2:15 p.m. Summary and Panel Discussion

2:15 2:30 p.m. AFTERNOON BREAK

SUMMARY
NIH Moderator: Dennis Mangan, Ph.D., Office of Research on Women's Health, NIH
Co-Moderator: Suzanne D. Vernon, Ph.D., CFIDS Association of America

2:30 4:45 p.m. All Speakers and Co-Moderators
Summary of Each Session
Responses by Department of Health and Human Services Federal Agencies
Full Workshop Panel Discussion

4:45 5:00 p.m. CLOSING COMMENTS
Vivian W. Pinn, M.D., Office of Research on Women's Health, NIH

 

[Sasha]

Agenda here https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

Thanks, Kate - I've updated the opening message of this thread with the new link.