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Iona
Member in Phase 2
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Posted: Wed Jan 6th, 2010 22:05 |
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Dr Trevor Marshall wrote: Iona,
Is your post suggesting that we make a judgment concerning the citations you posted? Do you have a perspective?
Sorry for not being clear. Just thought it was interesting that a big contributor behind the study was mr "it's all in your head", and the possibility of bias. The study might very well be correct, just an observation.
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ME/CFS, Ulcerative Colitis| 1,25D 57,8pg/ml Jul07| Ph1 Jan08| Ph2 Feb09| Melatonin| NOIRS, covered up| 25D 8ng/ml 06.02.09|
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Jan 6th, 2010 22:14 |
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Well, as I point out above, WPI appears to have bias in full measure. I think a meeting of the minds might be a better strategy, and I would be happy to share what we know, if anybody in the wider CFS community ever bothers to ask me.
In the absence of such engagement, this Foundation will continue to focus its outreach in areas (like autoimmunity) where the discussion tends to focus on the science, rather than on personalities. I suspect Wessely might also feel a desire to shift research away from CFS towards his other interests.
Would that really be the best way to bring solutions for the long-suffering patients?
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eClaire
Member in Phase 2
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Posted: Wed Jan 6th, 2010 23:17 |
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Dr Trevor Marshall wrote: The way to change an academic's opinion is to provide support for an alternative hypothesis, as we have done, rather than resort to name-calling.
Sorry, but if I could think of some suitable name to call Wessely I would... ah, self righteous. I think the only way someone like Wessely will be convinced that CFS is not directly caused by childhood abuse would be for him to develop it. All the physical evidence in the world will not. He will just say that the stress the person experienced is the cause. I have no trouble acknowledging that stress compromises the immune system and contributes to ill health, but to single out people with CFS and to believe that for the sickest of people the answer is some sort of behavioral therapy, that is just plain crazy.
Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Jan 7th, 2010 01:10 |
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Claire,
Wessely has not singled out anybody. I did a quick check of several interviews. He is behaving just the same as a number of perfectly reasonable (but stubborn) academics I know. He started off his GWI interest as a self-induced illness, and changed his mind as he studied it.
There has been quite enough of this discussion. Nothing productive can be served by continuing it.
It is best if you all let me interface with the people like Wessely, of which there are many. Please focus on recovering your health so that you can stand as an example, and a case-history, which will give us the ammunition to make sure that CFS becomes irrefutably recognized as a curable, physiological disease.
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dga5000
Guests visiting Phase 1/2/3
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Posted: Thu Jan 14th, 2010 18:39 |
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FOR IMMEDIATE RELEASE
Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com
Whittemore Peterson Institute Announces Availability of Updated XMRV Testing
Reno, Nev. - In October 2009, together with the Cleveland Clinic and National Cancer Institute, the Whittemore Peterson Institute published findings in Science regarding the discovery of XMRV in the blood of Chronic Fatigue Syndrome (CFS) patients. The testing method, validated in multiple other labs using positive control samples, uses a unique process that was extensively peer reviewed before publication and provides the most accurate results available.
This virus culture test is the same method used in the Science publication, and the only scientifically validated methodology to find XMRV. Some labs, including the recent study published in the U.K., have used non-validated PCR and whole blood PCR assays. At this time no single PCR or whole blood assay alone has been validated as accurately detecting XMRV, and is therefore not an appropriate way to study or diagnose the presence of the virus. WPI has licensed the latest version of the test to Viral Immune Pathways Diagnostic
Laboratories (VIP Dx) in Reno, Nev. The non-exclusive license allows patients and their doctors access to a reliable diagnostic tool. The newly refined test uses a virus culture methodology that yields more reliable results in one test at a lower cost to patients. “Our mission at WPI is to discover bio markers of disease and translate those discoveries into accurate diagnostics and effective treatments for patients,” said WPI Founder and President Annette Whittemore. “We continue to talk to other clinical laboratory companies, both nationally and internationally, in order to make the test available to a wider audience.”
WPI Research Scientist and co-author of the Science paper, Dr. Vincent Lombardi, is providing technical assistance and oversight of the VIP Dx testing. In exchange for the non-exclusive license, VIP Dx will pay a royalty to WPI for each test it conducts.
“We structured the licensing contract to be sure that any and all profits that might emerge at VIP Dx from XMRV testing come directly back to WPI to benefit the research program” said Whittemore.
Dr. Lombardi is an employee of WPI, and has no personal financial interest in VIP Dx.
Likewise, the Whittemore family put their interest in VIP Dx into a trust to benefit WPI.
The availability of these tests has a dramatic impact to the CFS/ME community. These tests allow licensed laboratories to begin answering important questions about XMRV’s incidence in disease and prevalence in the world. WPI hopes that this will generate further research related to XMRV. "The institutes’ driving goal continues to be the translation of research to meaningful results for patients, explained Whittemore.
It is still unknown exactly how XMRV impacts humans. Scientists who understand the potential ramifications of human infection with retroviruses take the study of XMRV seriously. WPI researchers along with many other scientists around the world are actively engaged in advancing research in this field.
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CFS dx 1995; FMS 2000; Memory Loss; + Chlamydia Pnemoniae; + LMW Rnase L Protein; Alk Phos 131; MP: 14/01/05: Bolle Swisher w/ 100 lenses + NOIR 707; Betahistine Hrydrochloride 16mg (vertigo); Benicar stopped; Minocycline stopped; Added Quercetin 7/8/5; P
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jan 15th, 2010 15:18 |
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This is a very disappointing press release, and the assertions in it are not endorsed by the NCI (etc) , despite those institutions being cited in the first line.
The scientific way to figure out the dichotomy in results is to examine the PCR methodology used at both centers - the primers, and the methodology. WPI are putting the cart before the horse, and I am generally disgusted with the way this has all turned out for the CFS community - who have been left confused and harboring false hope.
One problem seems to be the culture step, that is what I would want to look at more closely. It really doesn't matter if it is "generally accepted," what has to be understood is why it is affecting the results so profoundly.
..Trevor...
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Joyful
Foundation Staff
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Posted: Fri Jan 15th, 2010 21:52 |
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Dr. Marshall,
Am I understanding you to say that the UK study needs to publish the technical details of their PCR work to the general public, and the same for the WPI? I'm not clear on why your reaction is what it is. If the WPI is working with other labs to reproduce the results using their technique, what is the problem?
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jan 16th, 2010 14:58 |
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The problem is this: The WPI technique may be flawed. The UK technique may be flawed. But the way to resolve that is to study the scientific methodologies, not put out press releases making assertions of 'superiority'.
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dga5000
Guests visiting Phase 1/2/3
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Posted: Thu Jan 28th, 2010 00:24 |
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Video of Dr. Mikovits XMRV Seminar and Q&A given a couple of days ago:
http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=15114&B1=EM012710N
Last edited on Thu Jan 28th, 2010 00:24 by dga5000
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CFS dx 1995; FMS 2000; Memory Loss; + Chlamydia Pnemoniae; + LMW Rnase L Protein; Alk Phos 131; MP: 14/01/05: Bolle Swisher w/ 100 lenses + NOIR 707; Betahistine Hrydrochloride 16mg (vertigo); Benicar stopped; Minocycline stopped; Added Quercetin 7/8/5; P
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Feb 15th, 2010 18:36 |
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Second UK study fails to link XMRV and CFS:
http://www.retrovirology.com/content/7/1/10/abstract
"No association between XMRV infection and CFS was observed in the samples tested, either by PCR or serological methodologies"
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Phillyguy
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Posted: Mon Feb 15th, 2010 19:03 |
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Any idea who performed this study and did they address the issues pointed out by Judy Mikovits in the first study?
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dga5000
Guests visiting Phase 1/2/3
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Posted: Mon Feb 15th, 2010 19:23 |
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Jonathan Kerr did the study. This study used PCR but the WPI now only used a Culture Tests as they found this to be the most reliable.
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CFS dx 1995; FMS 2000; Memory Loss; + Chlamydia Pnemoniae; + LMW Rnase L Protein; Alk Phos 131; MP: 14/01/05: Bolle Swisher w/ 100 lenses + NOIR 707; Betahistine Hrydrochloride 16mg (vertigo); Benicar stopped; Minocycline stopped; Added Quercetin 7/8/5; P
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Feb 15th, 2010 19:32 |
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The study has twelve authors, not just "Jonathan Kerr". Is Jonathan perhaps somehow notable?
PCR is the gold standard. What is the problem with using PCR analysis?
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dga5000
Guests visiting Phase 1/2/3
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Posted: Mon Feb 15th, 2010 19:40 |
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Jonathan Kerr is the link author with the WPI as he works with Judy Mikovitz.
Re PCR: I'm simply repeating what the VIP Dx state on their website and what others who were involved in the discovery of XMRV have stated.
January 2010
"Effective immediately VIP Dx will offer XMRV testing by virus culture only. Our improved culture method eliminates the need for additional testing and provides the most accurate diagnostic available with greater sensitivity."
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CFS dx 1995; FMS 2000; Memory Loss; + Chlamydia Pnemoniae; + LMW Rnase L Protein; Alk Phos 131; MP: 14/01/05: Bolle Swisher w/ 100 lenses + NOIR 707; Betahistine Hrydrochloride 16mg (vertigo); Benicar stopped; Minocycline stopped; Added Quercetin 7/8/5; P
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Feb 15th, 2010 21:02 |
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Thanks for the info on Dr Kerr. I wasn't aware of his connection with WPI 
Culture introduces the potential for error. PCR is capable of detecting down to one RNA/DNA fragment right now, there should be no need for any other technology to be used...
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Phillyguy
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Posted: Tue Feb 16th, 2010 18:50 |
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Bizarre results. XMRX shows up in roughly 4% of the overall population in both studies, but there are almost no positives in the UK CFS group. You would think that the UK CFS group would have had at least a 4% positive rate. Strange. Keep in mind that we are talking about some good scientists on boths sides of the issue now, so I look forward to the heated exchange that should ensue.
Most importantly, CFS is now being looked at as an infectious disease, rather than a psychological disease. Most federal funding has historically gone towards research relating to psych treatments and testing like CBT. Over the past several months, more money has been poured into CFS research as it relates to an infectious cause than at any other time in the past. The numbers aren't even close. The NCI has also been drawn into the mix which is good.
Even before the negative UK replication studies were announced, several prominent psychology publications came out attacking the WPI/NCI/Cleveland Clinic results. What ever happened to having an open mind on the topic? CFS is a major cash cow for the psych profession and it bothers me that their lobby has inserted themselves into the discussion since they have a significant vested monetary interest in ensuring the continued classification of CFS as a non-physiological affliction and have very little to contribute scientifically at this point.
If you listened to the Q&A session at the end of Mikovitz's presentation, she was open to the involvement of bacteria in the disease process. She didn't believe it was the cause but thought it warranted further review.
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Feb 16th, 2010 20:46 |
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Over the past several months, more money has been poured into CFS research as it relates to an infectious cause than at any other time in the past
Not one penny has been offered to us, all the focus has been on the outlandish and irresponsible claims being made by WPI. Was there an HHS hearing related to the MP?
Please don't generalize. IMO this whole episode has been a disaster for the CFS community.
she was open to the involvement of bacteria in the disease process
Mikovitz has not even picked up the phone to ask us about a bacterial cause - don't give her credit for something she has not done. All I have seen is a totally closed mind.
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Joyful
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Posted: Wed Feb 17th, 2010 07:32 |
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Overview of Dr. Vernon's (Scientific Director of the CFIDS Association) response: http://blog.aboutmecfs.org/?p=1274
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