Hosts: Vincent Racaniello, Alan Dove, and Rich Condit
Vincent, Alan, and Rich review questions and comments from TWiV listeners
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Links for this episode:
- CFIDS Association of America
- Research1st (CFS research)
- Chronic Fatigue Initiative (CFI)
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- Letters read on TWiV 151
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21 thoughts on “TWiV 151: Dear TWiVers”
Suggestion for an MD/PhD to interview:Â Jeffery Taubenberger
Suggestion for another PhD to interview: Â Jose Montoya
Thank you for your continued coverage of CFS and taking time to help the CFIDS association, I cannot thank you enough for this. As a patient with CFS I would love to see an episode dedicated to CFS as you mentioned. Logical scientific discussion with patients and treating physicians would help bring it home to people that this is real and serious.
The outlandish comments seen in news and blog articles have really overpowered a lot of rational dialogue on CFS and I worry it is doing a great deal of damage to the diseaseâ€™s reputation. This has only amplified with the recent mess of XMRV. I am hoping an episode on CFS could help clarify to the people we need the most, the scientific community, that the rambling comments they see online are a gross misrepresentation of the patient population.
Thanks Dr. Racaniello for sticking with CFS and being part of the CFIDS Associations Science Advisory panel. The MECFS community has, I believe, benefitted greatly, from your objective inputs on XMRV and good luck with your work with the CAA.Â
I’d like to suggest Patrick S. Â Moore.
When will the professor start talking about the human gammaretroviruses the Lombardi group discovered and not VP62/XMRV, which those viruses are not.
The population is not ignorant of the fact that Dr Frank Ruscetti and Dr Judy Mikovits discovered human gammaretroviruses are associated with ME/CFS, and that the viruses they found are not VP62/XMRV.
I will talk about human gammaretroviruses when there is evidence that they infect humans. As of this moment there is none. As the Lombardi et al. 2009 Science paper stands now, it contains no proof that HGRVs infect humans.Â
This is where the WPI and Dr. Mikovits need to step up and admit that they are wrong, instead of leading on those in the CFS community who do not understand the science.Â They both have acted irresponsible on this.Â Unfortunately it is likley that Dr. Mikovits and the WPI will not back away from XMRV/HGRV claims until after the Ian Lipkin study is completed though.
Good luck with the CFS stuff.Â There’s now pretty clear evidence that EBV is a relatively common trigger… trying to understand more about the long-lasting affect of this virus could be a good place for virologists to start?Â As you say, it seems like a diagnosis which would be very difficult to do good research for.
I second that!
XMRV hasn’t been shown to be associated with ME, but this isn’t Mikovits’ fault. Â It was an error by Silverman, which seems to me to be understandable. Â I feel that Mikovits has overreached sometimes, but those who have put her under all this unwarranted pressure have said equally and more overreaching comments and we don’t hear scientists going after them, much less the outright frauds like Wessely and White.
We don’t know whether Mikovits is right or wrong on the other HGRVs, but she has evidence at least in her own lab and this theory is totally consistent with all evidence about ME.
Thank you for your efforts to help pwME! Â This admirable commitment is embodied in your serving on the CFIDS Association of America’s scientific advisory committee.
Please do be aware that from the best evidence we have, the CFIDS Association of America does not represent the vast majority of pwME. Â There are numerous blogposts on this subject from advocates; also the longest thread ever on Phoenix Rising with 1700+ posts is on the failings of CAA.
The “Association” does not have any members, only donors. Â There is no accountability for all of the missteps that CAA makes since the Board of Directors is self-perpetuating (the board, and only the board, votes on who becomes a board member).
There are two on-line polls in the two major ME patient fora:Â
-The Phoenix Rising poll has 88% of patients indicating they think CAA needs a change of direction and leadership; another 3% say CAA needs to change direction.
– The mecfsforums poll has 44% agreeing that CAA needs to change direction and leadership; 51% think that “CAA needs to disappear from the planet (or more extreme and violent desires)” with the remaining 5% thinking that “CAA is doing great”
24 “User ratings” on guidestar.com average 2 out of 5 stars
charitynavigator.com gives CAA 2 stars out of four for financials, partly because of the high salaries of the CEO Kim McCleary: $157K, 10% of CAA annual revenue, Suzanne Vernon and their accountant.
One problem, of many, is that Suzanne Vernon coauthored the CDC’s patently fraudulent Reeves CFS Criteria. Â (she says in a page on the CAA website that she now favors that it be dropped, but has done nothing else to counter this fake definition, which CDC uses in XMRV and other ME studies).
Unfortunately, there aren’t a lot of great options for someone who, like yourself, generously volunteers to advise on science of ME. Â CFI (other than the stupifying name) seems to be pursuing good research, certainly Montoya’s Stanford CFI efforts as well as Lipkin’s; also I of course am a fan of Judy Mikovits and WPI. Â Perhaps you could advise these much better efforts instead.
Thank you for your consideration.
Justin Reilly, esq.
If you do stay on with CAA, pls suggest that they support Judy Mikovits, and most importantly that they use the International ME definition and Canadian Consensus Criteria for ME, instead of, or in addition to Fukuda.I also suggest studies that would have important impacts like a study to document the extremely strong association between ME and non-hodgkin lymphoma; also the DeFreitas retrovirus really needs to be looked at again. Â Thanks again.
I can’t believe you have a link to the ERV blog! Â You may know that she curses out and insults patients and scientists on her blog. Â For example, she has called Dr. M “a gigantic f***ing c**t” (without the censoring stars) and a very disabled patient “the oh-so-fatigued” Andrea Whittemore.
There is no scientific evidence any of the data in Lombardi et al. or Lo et al. is wrong. Â There is no evidence of Frank Ruscetti, Judy Mikovits, Lo or Harvey Alter having acted irresponsibly.
As there is no paper or scientific evidence to refute the findings of Lombardi et al. or Lo et al. you are incorrect. Â All papers that used VP62 should be retracted as VP62 does not exist in nature and is not the viruses Lombardi et al. discovered and Lo et al. confirmed, which are HGRVs.
On the second anniversary of the publication Dr Judy A Mikovits presented a paper regarding evidence supporting infection of ME patients with Xenotropic MLV-related viruses at the Fibromylagia ME conference in Tullamore, Ireland. Dr Â Mikovits explained the recent finding that DNA samples described in the 2009 Lombardi et al. publication were found to be contaminated with an XMRV virus clone named VP62. The reporting of incorrect viral sequences explains why the experiments designed to replicate the PCR data described in the Lombardi et al. paper have given negative results in many laboratories.Dr.Â Mikovits described the detection of gammaretrovirus protein directly from un-manipulated plasma,Â direct isolation of gamma retroviruses from blood cells of ME/CFS patients shown clearly by electron microscopy, cell-associated and cell-free transmission of virus to uninfected primary cells and cell lines, antibodies against an envelope protein derived from a murine leukemia virus in serum of CFS/ME patients.Â In the 2009 work, serum from more patients than controls exhibited antibodies against the viral envelope protein.Â These findings are not affected by the errors in Figure 1 and in the virus genome sequencing and in fact explain discrepancies in Figure 1 and the protein/antibody data shown in the paper.Â Â Individuals whose immune systems have made antibodies to a gammaretrovirus envelope protein have been exposed at some time to similar polypeptides.Â The identity of the proteins that elicited in the antibodies is not presently known; all that is known is that they are highly similar to proteins known to be present in gammaretroviruses.Dr Mikovits described howÂ XMRV has suffered from an issue of nomenclature.Â Dr Mikovits and colleagues used â€œXMRVâ€ to mean viruses with sequences similar to the virus reported by Urisman et al. in 2006 to be present in prostate cancer tissues.Â However, Â â€œXMRVâ€ has come to mean only the sequence of the virus molecularly cloned (but not isolated) in 2006 and the nearly identical viruses that have been found in some cell culture lines.Â In order to clarify nomencaltrue for future research on gammaretroviruses, Dr Mikovits proposes referring to gammaretroviruses detected in humans as â€œHGRVsâ€, human gammaretroviruses.
What about the Lo/Alter paper? Â They found HGRVs (not XMRV) to be highly associated with ME, but not with controls. Â
I forgot to add that an ME patients’ “Petition to disassociate from CFIDS Association of America as our advocacy representative” currently has 600 signatures.Â
That little piece of information is decades old. Â A range of other viruses and triggers are also related, but they are not what perpetuates the disease called ME. Â If EBV was the cause and study after study has already ruled this out, the rate of ME would be much higher than 0.4%. Â There is no explanation of what would be tested to try and makes EBV fit, whereas HGRVs do fit.
VP62 doesn’t exist in nature as it was constructed from three sources. Â The evidence in Lombardi and Lo support HGRVs infecting people with ME/CFS. Â Why do you dislike this research?
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