When I posted about the “truthiness” I saw in a comment by Dr. Mikovits, I expected criticism. I’ve heard from folks in the comments, on Twitter and Facebook, and by email. I think some of the points and questions raised are worth addressing directly.
Why bring this up now?
I didn’t raise this issue out of the blue. Dr. Mikovits posted a comment to the FDA docket and it appeared on July 25th. I posted about it on July 29th. There was nothing to the timing besides that sequence – her post appeared, and I wrote about it here.
You’re driving a wedge into the community.
No, I’m not. I am speaking honestly about a deep divide that already exists. The online patient community became polarized very quickly between those who believed the XMRV finding was correct and those who did not (or had doubts). The fights were nasty, and we’re seeing some spillover in the comments on my blog post. We did not just discuss the science during that time. Aspersions were cast by both sides, including accusations of bias and ulterior motives, and this is continuing today. These exchanges were (and are) quite toxic, and this environment drove many people out of online participation. I’ve received several direct messages since I put up my blog post that were supportive, but the individuals were unwilling to post publicly.
I am not trying to increase the toxicity at all. My sense of the community is that everyone would like to just move on, and forget the details of what happened. I understand that desire. I am playing the unfortunate role of pointing out the elephant in the room, and I know many people would like to pretend the elephant isn’t there. But the only way to avoid stepping in all the elephant poo is to admit it is in the room and deal with it.
It was all Dr. Silverman’s fault.
First of all, that’s not accurate. Second, my post detailed some of the steps Dr. Silverman took to correct his mistake. I admire him for doing so.
Dr. Mikovits got a raw deal, and admitted there was a mistake.
Yes, Dr. Mikovits said at the September 18, 2012 press conference on the Lipkin study that XMRV was “simply not there” and that she was “100% confident in the results.” I give her a great deal of credit for doing so. It’s never easy to admit a mistake, and Dr. Mikovits did so publicly and after three years of defending her original results. That must have been very difficult, but she did it and that is a good thing. The point I made in my earlier post was that the evidence was there well before September 2012.
The WPI-Mikovits implosion and the resulting legal cases were shocking. Just when I thought things could not get more wild, they got wilder. It’s a huge mess and I have no idea who is right and who is wrong. Usually, these kinds of fiascoes involve right and wrong on both sides, and if I had to guess I would say that is the case here.
You are a mouthpiece for the CAA, and they’re evil so you are too.
I am not a mouthpiece for the CFIDS Association. I have no formal relationship with the organization anymore. Opinions and views expressed on this blog are my own, unless otherwise noted. My views are similar to those of multiple organizations and individual advocates, but I am not trying to represent anyone but myself. At some point, it may be relevant for me to talk about an “inside” view of XMRV and the CFIDS Association, as I was on the Board from 2009 to 2011, but I don’t think it’s pertinent today.
There is evidence that ME/CFS patients (and other patient cohorts) are infected with gammaretroviruses.
There is no published data supporting the assertion that ME/CFS patients are infected with gammaretroviruses. All the papers showing such data were retracted by the end of 2011. There may be unpublished data, but it needs to be published in a peer reviewed journal before it can be considered valid. I don’t follow the literature for other patient cohorts very closely, so I can’t say for certain whether data has been published on that point.
Let’s just move on.
“Those who cannot remember the past are condemned to repeat it” – George Santayana
Your clear, concise and unbiased presentation of the facts is always appreciated Jennie. Feel well.
http://www.amazon.com/Plague-Scientists-Intrepid-Retroviruses-Syndrome/dp/1626365652/
Dr. Robert Silverman is on the scientific advisory board of the CFIDS Association of America. (Source: http://www.cfids.org/research/scientific-advisory-board2011.pdf) As Jennie posted, she herself was recently on the Association’s board of directors, and her tenure at the CAA may have overlapped Dr. Silverman’s in 2011.
Jennie, I’m wondering if this shared affiliation to the CAA helps explain your strong reaction to Dr. Mikovits’ brief and–in my view–unremarkable comment to the FDA.
That’s a fair question, Rebecca. Thanks for raising this.
As you said, Dr. Silverman was appointed to the Association’s Scientific Advisory Board in 2011. I met him briefly at a meeting, before I knew anything about his request to Science to retract his data. I have not looked at my notes from that meeting since 2011, and I have no detailed recollection of what he said. I did not have any “sidebar” conversation with him then, and have never communicated with him since.
My reaction to Dr. Mikovits’ comment is not based on Dr. Silverman’s connection to the Association, or the fact that I shook his hand at a meeting. I think my reaction is based on my collective experiences and observations of the ME/CFS landscape (science, politics, medicine and advocacy), particularly after the publication of the Lombardi paper in October 2009.
Jennie,
I’m just catching up on your posts and wanted to say how much I appreciate your taking the time to read through the proceedings and bring to our attention the data and the comments that might be of interest. In my view, you are correct when you say: “Usually, these kinds of fiascoes involve right and wrong on both sides, and if I had to guess I would say that is the case here.” If I had to guess, I would also say that this is the case here.
Thank you so much for fighting the good fight to help us find the cause and effective treatments for this terrible disease.
I share your sentiments, Jennie. Thank you for taking the time to address these important issues.
“THE PEOPLE UNITED WILL NEVER BE DEFEATED!” Move on from the naysayers, Jennie.
It is 100% unproductive for any of us to be getting into internal attacks:defense modes.
We all need to focused.
The one thing that we all have in common is that we are HIV-Negative.
In the U.S. last year, the NIH spent $3.1 BILLION of our tax money providing free services to perfectly healthy HIV+ people.
Sick, ailing immuno- defunct (some of us dying) CFIDS patients received $6
Million.
source: http://www.report.nih.gov/categorical_spending.aspx
How can it make sense TO ANYONE?
Perfectly healthy HIV+ people (like this man –> look at this photo
—> http://hivplusmag.com/NewsStory.asp?id=22223&sd=08/08/2012 ) receive
billions in our tax money. And, there is not a stitch wrong with them.
Perfectly healthy HIV+ people receive FREE daily prepared meals, FREE housing &
transportation, FREE massage and physical therapy, FREE, FREE, FREE —
Perfectly healthy people receive billions, while we all suffer and die in multi-year long waits for benefits and services.
WE NEED TO CONTACT OUR GOVERNMENT REPS, AND DEFUND HIV!
My sample “DEAR CONGRESSMAN” letter here. –>
http://cfsstraighttalk.blogspot.com/2006/10/potential-hope-for-cfidsme-patients.\
html
Stop fighting amongst ourselves —>
Let’s start a revolution in 2013! Vive La Revolución.
“THE PEOPLE UNITED WILL NEVER BE DEFEATED!”
@Toni Bernhard
Toni in what way exactly is Jennie helping us find the cause and effective treatment for the cause of this terrible disease?
@flybytheseatofmypants
“THE PEOPLE UNITED WILL NEVER BE DEFEATED!”
PEOPLE NEED TO CHANNEL ALL INQUIRY, FRUSTRATION, & INTERROGATION HERE –>
(channeled amongst ourselves is just pointless)
U.S. Reps here —>
http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://www.house.gov/representatives/
http://www.whitehouse.gov/contact/
If people want to see what CFS & MEers’ (one a syndrome, one a disease) need to be doing, should watch this award-winning documentary “HOW TO SURVIVE A PLAGUE”: http://surviveaplague.com/
There is no ONE cause of CFS. We are the “miscellaneous” category. Syndromes do not have a sole cause. Even most diseases do not have a sole cause. Take lung cancer (a disease), I can think of 4 causes just off the top of my head.
Some CFSer’s are infectious. some of us are not. We all “acquired” our illnesses.
For example, you can “acquire” squalene or mercury poisoning from a vaccine contamination and not be infectious. Contrastingly, you can “acquire” SV40/SCMV/Mycoplasma from a vaccine contamination and be 100% infectious. Contagion aside (i.e., infectious or not), the result is still an “acquired immune deficiency/dysfunction syndrome, not caused by HIV.”
Treatment for CFS is no different than any other chronic illness –> NUTRACEUTICALS.
Be (as) well (as possible).
k
The immunological findings, the many different agents that seem to trigger the illness, the mixture of neurological, endocrine, and psychiatric affect, and the Brain on Fire story by Susannah Cahalan all lead me to suspect ME/CFS is fundamentally an autoimmune disorder of unknown type. Just my 20 cents worth. (Inflation.) So it makes me frustrated to see patients (and researchers!) still hammering away on infectious agent models of any type. But like Jennie says, we can’t sweep that history under the carpet, but rather examine why it happened and why (IMHO) infectious hypotheses don’t quite work.
The numbers in the Mikovits et al 2010 “Addendum” don’t add up. The numbers are not based in reality. The numbers are a fiction, a fantasy
This is not Silverman’s fault, this is the fault of Mikovits et al.
And that the numbers in the “Addendum” don’t add up is either
– the result of stupidity, stupidity of gigantic proportions
– the result of cold blooded fraud
Pick your version.
I certainly can’t speak for others but I don’t think the “Elephant Poo” has anything to do with Mikovits directly. Where I see true polarization is between supporters of the CAA and those who think the CAA’s efforts have been dismal, if not counterproductive.
Mikovits is a distraction that you/CAA seem to be promoting.
If you want to truly break through the polarization maybe you could start by researching whether CAA is an Advocacy organization or not.
And if they are a research organization it would be nice to see a comprehensive strategy on where CAA plans on focusing their efforts with their limited resources. Not a willy-nlly collection of random ideas that ultimately “require more research”.
Additionally, the CAA seems to “advocate” that CFS is “fatigue” of unknown etiology with no known physical abnormalities (ie the CDC position). If CAA wanted to cut through the polarization they would take a stand on this – not conjure up distractions over obscure documents written by Mikovits.
And, finally, it behooves the CAA to show independence from the CDC and reveal who their major contributors are so it’s clear who they are beholden to.
Mikovits’ role was the anti-CAA/Establishment position. Many people do not TRUST the CAA and friends…that is the crux of the matter.
I’m always a week or two behind in my blog reading and occasional responses, but I wanted to thank you for talking about this in the dispassionate manner in which it should be addressed. I believe that, despite all that happened, XMRV has proved to be a net gain for our community. But…my what a price was paid by so many: the patients who spent money they sorely could not afford on a worthless test (and treatment!), the scientists who, in trying to help us (and the world) figure out if this was what we hoped (and feared), were treated appallingly by the very people they were ostensibly trying to help, the Whittemores and Dr. Mikovits in legal and professional grief, and on and on. Thankfully many of those scientists have chosen to stick around. And I know I certainly learned a great deal about the scientific process on a pragmatic level and hope it has made me a more discerning and mature patient. But there are so so so many lessons we as a community should have learned from this experience, particularly with regard to what became (has become?) ME/CFS as religion and XMRV/Gammavirus our Lord and Savior. Hopefully we will continue to talk and face it mindfully.
FWIW, Mr Landson, my two dimes are with you. The prevalence of this disease is so classically autoimmune that, despite how excited I was that we may have finally found our culprit, it made for my main concern regarding the XMRV theory. It didn’t fit the way such an infectious agent would spread. I appreciate how in the mid-90s Hillary Johnson’s book made a retrovirus seem as good as any other theory. But 15+ years of research later, I worry that it may be a waste of scant resources to continue clinging to the chimera of infectious origin.