On April 15, 2010, a government
source told CFS Central that a soon-to-be-published CDC study hadn’t found the
retrovirus XMRV in CFS patients but that another government agency had. The agency that found XMRV in CFS
patients—and up to 7 percent of the blood supply—turned out to be two agencies:
the National Institutes of Health (NIH) and the FDA, as was leaked last week.
Today the Wall Street Journal is reporting that the CDC paper, which was accepted
at the journal Retrovirology, has
been put on hold, as has the FDA/NIH paper, which was accepted at the Proceedings
of the National Academy of Sciences. The
reason? According to the Wall
Street Journal, it’s because “senior
public-health officials wanted to see consensus—or at least an explanation of
how and why the papers reached different conclusions.” In addition, the Wall Street
Journal also reported that a spokesman for
the Department of Health and Human Services said the research was being
reviewed to ensure “accuracy” and “relevancy of the scientific information.”
Some insiders say that this is a
face-saving move to come up with a plausible explanation for the disparate XMRV
findings and to present a united front so as not to confuse the public about
blood safety.
The CDC has had a problematic year where CFS is
concerned. The long-time CDC principal investigator for CFS research Dr.
William Reeves was reassigned on February 14, which many critics believe was
because the scientist was embarrassing the agency. After Dr. Judy
Mikovits's paper
linking XMRV to Chronic Fatigue Syndrome was published in Science in October, Reeves told the New York Times: “We and others are looking at our own
specimens and trying to confirm it. If we validate it, great. My
expectation is that we will not.” Reeves also told the Times that the culprits behind CFS were more likely sexual
and emotional abuse and an inability to handle stress.
Privately, insiders have told CFS Central that they
did not expect the CDC to find the retrovirus because the agency’s CFS
definition has been watered down from one neuroimmune disease to five different
combinations of depression, insomnia, obesity and “metabolic strain,” as Reeves
himself explained in a 2009
paper. In a 2008 CDC paper, “An
extended concept of altered self,” Dr. Jim Jones argued that illnesses such
as CFS are “illness states” rather than “true diseases.” A CDC paper from
2006 on coping
styles found CFS patients guilty of “maladaptive coping” and
“escape-avoiding behavior.”
If the CDC had found the retrovirus, it would have
negated its 20-year affair with CFS as a psychological problem. Now that
two other government agencies have found XMRV and other studies due out this
summer have also found the retrovirus, critics point out that the CDC is in a
no-win situation and beginning to look like the odd man out.
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Thanks for posting this. Your site was one of the first I checked after I read the WSJ article.
ReplyDeleteSome insiders say that this is a face-saving move to come up with a plausible explanation for the disparate XMRV findings and to present a united front so as not to alarm the public about blood safety.
That is disturbing. If the government wanted to interfere, the time to do so was when Reeves and crew were spending what little funding ME had on junk science.
Also, what do they think the public is going to do if they even notice the news about XMRV? Is the government really concerned, or is this just a lame excuse to stop the presses? If the masses didn't riot over HIV, they won't concern themselves with XMRV. Unfortunately.
cinderkeys,
ReplyDeleteI just changed "alarm the public" to "confuse the public" to more accurately express what I've been told.
Reeves makes my blood boil !!!!!
ReplyDeleteHow can we put pressure to make this information plublic fast?
ReplyDeleteGreat post Mindy!
ReplyDeleteCan we start the ball rolling with one or more Freedom of Information Act requests to get this data out? These papers must see the light of day ASAP. This move flys in the face of openness and transparency that this administration purports to have.
I don't wish to confuse or frighten the public, but nor will I stand and watch more people get infected, more people being thrown into a hollow existence - in pain, isolated, many with severe consequences such as cardiac problems with an estimated 25% bedbound or housebound.
We are not "tired". We are living in a limbo between life and death. We are oftentimes alone and in abject poverty, typically without even adequate symptomatic/supportive medical care. This must stop, NOW. The band must be silenced.
It is time to move to real treatments and prevention and get beyond governmental CYA. I want those 'A's hung from the nearest yard arm, starting with Dr. Reeves, but I will settle for getting ALL the science published without further delay.
While these two studies are at the journals awaiting publication and will be difficult to hide forever, others may be at risk of being quietly buried or "massaged" to reduce "confusion". Science must prevail, and all data needs to be presented warts and all.
Finally let us not forget that the NIH shares culpability for the pathetic state of ME/CFS scientific knowledge.
Otis
You have to forgive Reeves: he's a mental health case. The truth is coming
ReplyDeleteIt's obviously just a ploy by the CDC to delay publication of the positive XMRV studies by the FDA and NIH, papers we are eagerly waiting to see. It's difficult to believe that "they" allow the CDC to get away with all these shenanigans. We got rid of Bill Reeves and now we have his double, Bill Switzer. Puppets & strings come to mind.
ReplyDelete"Reeves also told the Times that the culprits behind CFS were more likely sexual and emotional abuse and an inability to handle stress."
ReplyDeleteDon't forget the 'female gender', which according to Dr. Reeves, occurs as a result of "women [being] treated differently in society than men are'.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm
I have a question if you know. You refer to other studies due out as positive and CDC being the odd one out. How reliable is this info? Itsuggests that evenif the suppression continues on the FDA and NIH studies the pressure to open will increase. On the other hand if other negative studies are due it might give impetus to burying FDA and NIH studies- if that is the agenda.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteLet's please be careful to be clear that there are TWO different studies, one from the NIH and one from the FDA. We've all gotten sloppy about "combining" them in our discussions of them.
ReplyDeletePeter,
ReplyDeleteThe information about the positive studies due out is reliable. Otherwise, I wouldn't have printed it. That doesn't mean, however, that other negative studies won't be coming out as well. However, other than the CDC study, I have no knowledge of another negative study that's forthcoming.
We must stop referring to the people in the CDC study as having ME/cfs.There is no such thing in objective terms.There are two basic approaches to diagnosis.
ReplyDeleteThe first is to select for patients with neuroendocrine symptoms and excluse those without.This is the Canadian Consensus approach
The second approach is to exclude patients with neuroendocrine symptoms and only include patients with medically unexplained fatigue.That is the approach of the CDC. Patients with fatigue arising from depression and somatoform disorders are actively selected
It does not take a rocket scientist to realise that patients with entirely separate illnesses end up being given the same label.We should not fall into the trap of using this label as having some objective relationship to the underlying disease under consideration
It is also worth noting that the CDC are usinga technique that demonstrably cant find the virus!
SIGN THE XMRV PETITION. GET THE STUDIES RELEASED!
ReplyDeletehttp://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress
There are lots of negative studies- the Huber one, the Montreal/Joliceur one, the German/Koch Institute/Hohn one, and for the life of me I distinctly remember there being two others(upcoming, not already published) that I can't remember what they are now. CDC could have been one, but I remember tallying up 5 different negative studies the last time I added them up.
ReplyDeleteJohn,
ReplyDeleteYou are right. I thinking about negative studies that haven't been talked about at conferences, etc.
I set up a petition against the CDC's watered-down definition for CFS at:
ReplyDeletehttp://www.ipetitions.com/petition/empirical_defn_and_cfs_research/index.html
I had a letter challenging the definition published in the June issue of Psychosomatics:
PubMed listing:
Kindlon T.
Criteria used to define chronic fatigue syndrome questioned.
Psychosom Med. 2010 Jun;72(5):506-7.
All of our regulatory agencies have huge problems and have had for decades. I have thought for many years what the reasons for denying ME/CFS as a physical illness are. Of course the obvious answer is many of us are female. The same thing happened with Lupus. The only reason the FDA found XMRV was no drug company was set to make a profit from denying the truth and they look bad for not trying to get it out of the blood supply. I was a supervisor at a blood bank in the 1990s and we did not take blood from those with CFS for obvious reasons. Something has to be done about the CDC, they may have blocked many other discoveries based on their own personal biases.
ReplyDeleteReeves and Wessely can burn in hell for the sufferring they have done to millions afflicted with ME/CFIDS. We have entrusted our lives with you, but you have left a knife in our backs.
ReplyDeleteJohn, there are 5 negative XMRV studies to date not including CDC and 2 unpublished ones.
ReplyDeleteHowever, there are several positive XMRV studies in prostate and in controls studies that did not look at CFS groups.
As for positive XMRV studies relating to CFS, the only one published is in Science by WPI,NCI,Cleveland clinic and a soon to be published one in PNAS by NIH and FDA.
In addition, there is about 12 XMRV/CFS positive studies to be published this summer.
Be patient, the battle is just beginning and the war remains to be won.
The CDC's negative XMRV paper looked for CFS-like diseases in the CFS cohorts as defined by the 1994 Holmes definition which did not include neuroimmunoinfectious symptoms, but looked for those with fatigue from depression, obesity, metabolic strain(per reeves), and other mental diseases. The Holmes definintion of ME/CFIDS/CFS is far different than that of the Canadian Criteria of ME/CFS and the more precise US Fukuda definition vs Holmes.
ReplyDeleteCDC looked for XMRV in a group defined by the Holmes criteria, while the lombardi paper in Science looked for XMRV in a CFS group defined by the Canadian Criteria or Fukuda Criteria. Similary, the soon to be published positive XMRV paper from the NIH and FDA used the proper Canadian Criteria and Fukuda criteria to define their CFS cohorts not the Holmes criteria.
Are these the same studies on CFS/CFIDS/ME or did someone do a CFS-like disease based on the Holmes criteria calling it all the same?
Holmes criteria = FAIL
ReplyDeleteCanadian Criteria = WIN
Fukuda criteria = WIN
Anyone using the Holmes criteria in their CFS studies is a complete FAILURE to themselves, to ME/CFS, to science, to patients and to God. There is no logical argument in using the Holmes criteria unless you're looking for mental diseases having nothing to do with ME/CFIDS.
The Holmes criteria of CFS describes a dozen fatigue LIKE symptoms and diseases(mental diseases, depression, bi-polar, obesity, MPS, hypothyroidism, lyme disease, mold poisoning,metal poisoning that have nothing to do with the ONE and more serious disease of ME/CFIDS.
Don't do the studies and select your CFS cohorts until you can distinguish between Holmes criteria and Canadian criteria/Fukuka criteria for your patient selection. A patient with depression is not the same as a patient with ME/CFIDS/CFS. Please do the right thing.
These two methods are hands down hardly likely offer you exceptionally right.
ReplyDeleteTJ and company was born writing and bringing about their own
captures.
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