Monday, August 23, 2010


by Mindy Kitei 

The just-released study detects variants of the retrovirus XMRV in most CFS patients.  In addition, nearly 7 percent of the healthy U.S. controls—all of whom are blood donors—test positive, signaling the contamination of the U.S. blood supply. 

Patients, physicians and virologists have been anxiously awaiting the Proceedings of the National Academy of Sciences (PNAS) paper on Chronic Fatigue Syndrome and the retrovirus XMRV.  The paper, "Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy controls," was published today.  In it, the authors state that their conclusions “clearly support” the October 2009 Science study linking the retrovirus XMRV to the neuroimmune disease Chronic Fatigue Syndrome (CFS), which afflicts 17 million people worldwide, 1 million of them in the U.S.  XMRV has also been linked to a virulent form of prostate cancer.

Most surprising is that the PNAS study didn’t find XMRV, which stands for Xenotropic Murine Leukemia Virus-Related Virus, in any patients or controls.  Instead, researchers from the National Institutes of Health (NIH), the FDA, and Harvard Medical School detected novel close cousins to XMRV called MLVs—which stands for Murine Leukemia Viruses—in 86.5 percent of 37 patients and nearly 7 percent of 44 controls.

Seven percent is approximately 20 million people, a robust signal that these retroviruses have entered the blood supply. What makes this most likely a fait accompli is that the healthy controls in this study were all blood donors. Before the discovery of XMRV, there were only two known human retroviruses: HTLV and HIV.

A family of viruses
The NIH’s principal investigator on the study, Dr. Harvey Alter, believes his group and the earlier Science group are looking at the same retrovirus.  “Viruses tend not to be homogeneous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.”

Dr. Judy Mikovits, principal investigator of the 2009 Science study, agrees. “We presented a paper at the Cold Spring Harbor RNA tumor virus meeting in May showing that patients reported in Lombardi [the Science paper] contained both X [XMRV] and P [polytropic MLV] variants as well as at least one other family member,” Mikovits told CFS Central.

The Murine Leukemia Viruses detected in the Alter paper have been studied for more than 40 years and are known to cause leukemias and neurological disease.  As documented in more than 2,500 studies, patients with CFS suffer from neurological symptoms, including seizures, short-term memory problems and abnormal brain scans, as well as cancers, particularly lymphomas. The "Murine" in Murine Leukemia Virus is another word for mouse. The last known retrovirus to jump species was HIV—from monkeys to humans.

Alter said that the paper’s conclusions haven’t changed since June. That’s when his paper was put on hold, along with a CDC XMRV paper that didn’t find the virus in CFS patients. Back then, a spokesperson for the Department of Health and Human Services (HHS) announced that the papers were pulled to reconcile or at least to understand why the CDC didn’t find XMRV, and the FDA and the NIH did. At that time, Alter’s paper not only had already been accepted by PNAS, it was in galleys—the final stage before being printed in the journal.

Scientists disagree all the time, particularly with new discoveries, so holding up the PNAS paper at that phase was surprising and unusual. PNAS Editor-in-Chief Dr. Randy Schekman told CFS Central in July that putting a paper on hold had occurred only one other time that he knew of in his nearly four-year tenure at the journal.

Science or spin
The HHS announcement of pulling both papers morphed into political spin when the CDC study was published in the journal Retrovirology a few days later, on the listless Friday before the July 4th holiday weekend. Meanwhile, the scientists on the FDA/NIH/Harvard study were sent back to the drawing board to do more work on their study.

Their study, said Alter, has only gotten stronger in the interim. “There were no changes in the conclusions, but we added data that made the conclusions stronger,” he explained. “For one thing, we did some further work to feel confidant that there was no contamination…. We had hundreds of negative controls, and every assay had negative controls. And then we used an assay from mouse mitochondrial DNA and found that there was no evidence of mouse contamination. We had variation in the viruses we were finding. If there was a contaminant, you’d find one species, not several.”

The key scientists
Along with Alter and fellow scientists at the NIH, researchers at the Food and Drug Administration led by Dr. Shyh-Ching Lo, and Professor of Medicine at Harvard Dr. Anthony Komaroff, conducted the PNAS study. Alter’s earlier NIH research led to the discovery of hepatitis C. Chief of the NIH’s infectious diseases section and associate director of research in the department of transfusion medicine, Alter developed methods to screen the blood for hepatitis, essentially eradicating the risk of acquiring hepatitis from donor blood.

The highly respected Lo is best known for isolating the pathogen mycoplasma fermentans from HIV patients. And Harvard’s Komaroff, senior physician at Brigham and Women’s Hospital in Boston, has been publishing steadily on a viral connection to CFS since 1987.

The researchers caution, as did the earlier Science researchers, that their study doesn’t prove these retroviruses cause CFS, only that they’re associated with CFS. The next step is to determine if they’re causative for the disease and transmissible by blood. The latter seems likely, based on a recent study by researchers at Emory University’s primate lab.

“I think these retroviruses are likely to be associated with a subset of cases,” wrote Harvard’s Komaroff in an email to CFS Central. “Until larger studies are done, we won’t know how large that subset is…. The two important questions at this stage are: 1) Based on larger studies from a broader geographic area, what fraction of cases are associated with these MLVs; 2) Are these MLVs a cause of CFS, or just ‘innocent bystanders.’ ”

Four MLVs
The FDA/NIH/Harvard researchers detected four MLVs, which they referred to as “CFS Type 1,” “CFS Type 2” and “CFS Type 3.” Type 4 was found only in one control. “Not that we can tell,” Komaroff replied when asked if the different types exhibited different symptoms, “but the total numbers are small: We need much larger studies to answer this important question.”

In addition, the blood from eight of the 25 patients Komaroff supplied from 15 years ago had blood draws again in March 2010.  Seven of the eight remained positive. According to Komaroff, the patient who became negative hadn’t recovered.

However, that doesn’t mean that this retrovirus doesn't cause CFS, and it doesn’t mean that the patient isn’t still infected with the MLV. Since the host’s DNA becomes inextricably intertwined with a retrovirus, infection lasts for life. Besides, as noted in both the Science study and in the PNAS study, finding this retrovirus in the blood is difficult. In fact, Emory University scientists who injected XMRV into macaques this past spring reported that even when the virus was undetectable in the blood, it thrived in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes. Explained Alter, “When viruses are in low titer, sometimes you can find them one day and not find them another day.”

Mutating MLVs
Important to note is the retroviruses detected in those seven patients in 2010 had mutated in the 15-year interim. “That’s just what you’d expect from a retrovirus,” said Alter. “That’s more evidence that this is a real agent, not a sequence floating around in the lab.”

What's next
Alter said he’ll look at other cohorts of CFS patients as well as patients with other diseases, including hepatitis C, HIV, fibromyalgia and autoimmune diseases to see if they harbor these MLVs. He’ll also be examining larger populations of blood donors to determine if the MLVs are transmitted by blood.

The 2009 Science XMRV study led to Australia, Canada and New Zealand banning patients with CFS from giving blood. And the Japanese Red Cross issued a disturbing report that XMRV has been detected in nearly 2 percent of Japan’s blood supply. The U.S. government has stopped short of prohibition, but the National Cancer Institute has advised CFS patients against blood donation. Will the U.S. be next?   “Our policy now is that if someone says they have Chronic Fatigue Syndrome, we will not use them as blood donors,” said Alter.

Judy Mikovits believes that the prevalence of MLVs in the healthy population—3.7 percent in her study and 6.8 percent in the FDA/NIH/Harvard study—“represents a serious public health threat that demands research dollars and clinical trials for those who are infected and ill.”

Researchers at several governmental agencies have formed a working group to examine the blood supply for XMRV.  Now that the FDA/NIH/Harvard study has found additional MLVs, that pursuit will be broadened. “The current assays are very difficult,” admitted Alter, one of the researchers looking at the blood supply.  “The viruses are present in very low titers so you need a very sensitive assay.  They will have to be broadened to more than just XMRV."  No easy task.  An antibody test, Alter explained, would be simpler than the current methods of PCR and culture. "It would be more broad, and it wouldn’t require amplification or sequencing. The NCI [National Cancer Institute] has been working on an [antibody] assay, but it’s not so robust yet.”

Bishop paper
Interestingly, a group of British researchers led by retrovirologist Dr. Kate Bishop reported in 2010 that 26 of their group of 170 patients and 395 controls exhibited antibodies to XMRV. The surprise came when the scientists unblinded the study and discovered that 25 of the 26 were controls. “I was quite shocked,” divulged Bishop to CFS Central in June. Bishop understandably expected that most of the 26 would be patients. However, she wasn’t convinced that the antibodies were caused by XMRV. That’s because the antibodies of all but three controls and one patient weren't specific for XMRV and neutralized other viruses as well as XMRV. In hindsight, could those antibodies have been mounted against the MLVs that Alter and Lo found? At this juncture, it’s anyone’s guess.

FDA/NIH versus CDC
In late June, when HHS spokesperson announced the unusual decision to pull the PNAS paper as well as the CDC XMRV paper to reconcile or at least to understand the disparate findings of XMRV studies by the CDC, it became nail-biting time for patients. Several 2010 European studies failed to find any evidence of XMRV in CFS patients, and without confirmatory news many feared the XMRV connection would be severed.

Many patients and researchers have been ruminating whether the FDA/NIH/Harvard paper would ever be published. Indeed, one highly placed CFS Central source believed the study would have been quashed had some of its findings not been leaked in June by Dutch journalists at a blood-borne pathogen conference in Zagreb, Croatia. Ever since, online forums have been rife with uneasy posts from patients speculating whether the findings would be changed to fall in line with the XMRV negative CDC study.

Byzantine history
Given the 26-year Byzantine history of the government response to Chronic Fatigue Syndrome (see sidebar for more, below), including a retroviral link to CFS first detected—and then ignored—nearly 20 years ago, it’s been an understandable concern.

In 1991, a young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovered a retrovirus in the blood of CFS patients and, ironically, published her findings in PNAS. (Whether XMRV and DeFreitas’s retrovirus are one and the same is not known with certainty.) When the CDC couldn’t reproduce the results, DeFreitas’s discovery was dismissed.

Tangling with the U.S. government proved costly to the researcher, which scared off likeminded scientists for nearly 20 years, silenced patients and split the research community into two nonintersecting camps: Those who championed a viral cause, and those—including the CDC, several British psychiatrists and Emory University psychologists—who championed a psychogenic cause.

The scales tipped in the viral direction when Dr. Judy Mikovits of the Whittemore-Peterson Institute in Reno, Nevada, led the U.S. group that connected XMRV to CFS in 2009. Longtime CFS viral researchers, physicians and patients were hopeful for the first time in nearly two decades that maybe, just maybe, their time had finally come.

But after the spate of European studies that didn’t find XMRV in 2010, and after the CDC didn’t either, there was an elegiac sense of déjà vu—that what happened with Wistar’s Elaine DeFreitas was about to happen all over again. Blogged one patient: “If anyone can put a positive spin on this then please post now. I sense defeat (in myself). And another 13 yrs (to life) in the wilderness.”

Given today’s findings in the FDA/NIH/Harvard paper and the studies by Alter and other scientists in the works, that scenario no longer seems likely.

This article and sidebar, below, are copyright CFS Central 2010. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article. 
The CFS Political Backstory 
In 1984, Dr. Paul Cheney and Dr. Daniel Peterson dialed up the CDC for help with an outbreak of a flu-like illness that had hit their picturesque town of Incline Village, on beautiful Lake Tahoe, Nevada. When the epidemiologists arrived, they saw about 10 patients, and then went skiing. That outbreak turned out to be one of several outbreaks of Chronic Fatigue Syndrome seen worldwide in the 1980s.

In 1991, a young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovered a retrovirus in the blood of CFS patients. Twenty years ago, newspapers and TV news shows latched onto DeFreitas’s finding, spreading the word that the cause of the debilitating disease had, perhaps, been found.

The jubilant atmosphere was short-lived. The CDC failed to find DeFreitas’s retrovirus in patients and controls (without using DeFreitas’s protocol) and British researchers found the retrovirus in all the controls and the patients—again without using her protocol. Given the diametrically opposed findings, DeFreitas reasoned the problem was rooted in the methods. But by that time, retroviral disbelievers outnumbered believers, media interest had flagged and the CDC took the unusual step of publicly chastising DeFreitas, which halted retroviral research into CFS.

In 1996, a congressional investigation proved that CDC scientists siphoned millions of Congress-appropriated CFS dollars to what then-CDC director Jeffrey Koplan told the Washington Post were "more important" maladies, including measles and polio.

The first report of an association of XMRV with human disease came in 2006—from U.S. researchers at the Cleveland Clinic studying a virulent form of prostate cancer, not CFS. But then a German study found no such association, a harbinger of the conflicting findings of the CFS XMRV studies to come.

Dr. William Reeves and the CDC
After Dr. Judy Mikovits's paper linking XMRV to Chronic Fatigue Syndrome was published in Science in October 2009, Dr. William Reeves, the head of CFS research at the CDC for 20 years until February of this year, 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.”

However, studies by Dr. Leonard Jason have shown that using the CDC’s latest definition of the disease, 38 percent of patients have major depression, not CFS, which is a serious neuroimmune disease, as shown in more than 2,500 peer-reviewed studies.

Though Reeves was transferred from CFS research to senior adviser for Mental Health Surveillance in February, he's still authoring studies on CFS. His latest, released in July, is “Personality Features and Personality Disorders in Chronic Fatigue Syndrome.”

For more information on the retroviral link to CFS, see "Blood Feud: Part 1" and "Blood Feud: Part 2" or contact CFS Central at


  1. Mindy, you are the FIRST to report this. Thank you, thank you, thank you!

    Patricia Carter

  2. Mindy, you are the first to report this. Thank you, thank you, thank you.

    Patricia Carter

  3. Thanks so much Mindy. We were all waiting.

    Karen Povey

  4. Thank you Mindy! Great article presenting the facts and the history.

    This news cannot get out fast enough IMHO.


  5. Great reporting, Mindy! Thank you!

  6. Great job Mindy. This will deserve reading a few times because there is a lot of good info in it... Keep it up- we are all watching.

  7. Fantastic! This is an exciting day! (Was a little worried earlier when your blog wasn't available!)

    Thank you so much!

  8. wow, thanks so much info! :)

  9. Mindy,

    have I told you lately that I love you?

    Thank you so much,

    Eelco (patient from the Netherlands for 11 years and counting)

  10. God bless you, Mindy, for your speed, first-off-the-mark, and in-depth investigative reporting.

    "... Alter explained to CFS Central in a telephone interview."

    Great scoops all!

    This is so monumental, I'm in tears reading your report, all these details, studies that Dr. Judy and others have been sitting on for month in excruciating silence, it's overwhelming to read it all at once now.

    Thank you so much for championing us and this incredible news.

  11. What a great, comprehensive article, Mindy! Thank you so much! You are an awesome journalist.

  12. REALLY well written! Excellent reporting.

  13. God bless you, Mindy, for your speed, first-off-the-mark, and in-depth investigative reporting.

    "... Alter explained to CFS Central in a telephone interview."

    Great scoops all!

    This is so monumental, I'm in tears reading your report, all these details, studies that Dr. Judy and others have been sitting on for month in excruciating silence, it's overwhelming to read it all at once now.

    Thank you so much for championing us and this incredible news.

  14. Great review of the back and back-back stories! As a reporter you will be finding out just how much denial and distortion has played out. It will make a great NY Times Magazine article (go for it!). Now that the truth is out, lot's of people are going to be fessing up about the manipulations over the years as they try to distance themselves from the CDC shenanigans.

  15. Oh my goodness, Mindy, you are the fastest reporter. Phoenix is jammed.

    Concerning the antibody test, does the WPI serology test (posted today, aug.23).. do you think it's sufficiently broad enough to cover MLV's?

  16. Fantastic.

    If your source is correct, then we all owe a debt of gratitude to whoever leaked this paper back in June. I'd like to know more about who would have quashed it, and how.

  17. really fantastic, strong article! wonderful... hope hope hope... xoxooxxo

  18. Mindy, Great reporting and analysis. You should be proud.


  19. Mindy. You speak the truth, not spin and diluted fact like the CDC.

    Thank you for everything you do for CFS patients.

    We love you and support you

  20. Mindy, I just read the Wall Street Journal, Washington Post, and New York Times articles on this teleconference. Your article was by far the BEST of them. You really put them all to shame!!

    Keep up the great work!!!!!!!

  21. Thank you Mindy- Great report full of the salient facts. Patient sigh with relief and the science can move forward now.

    Thank you


  22. Mindy, thank you. I absolutely agree with your unnamed source that parts of our government would have tried their damnedest to bury the Lo-Alter results, had news of it not leaked. Thank G-d it did. Keep up the good work.

  23. What an excellent report...much better than the leading papers. Thank you.

    Thank you also for continuing to flush out Reeves and the CDC. Reeves and the agency need to be highlighted as incompetent for spouting outdated psychodynamic theory as real science on ME pours in.

  24. This was a great article. Keep up the good work! I seriously hope your articles get picked up by mainstream media. I don't know what is involved in that happening, but you have my vote. Perhaps someone in the know can nominate you. And as far as reeves goes, I don't know why they don't just cut this guy off. He's still authoring papers on CFS!? FFS hasn't he caused enough distraction and damage?

  25. Thank you Mindy, for keeping on top of this! The "back story" is especially important and I thank you for that, too. It helps people who haven't lived through this nightmare to understand why ME/CFS patients are so intense.

  26. Well done. You really helped set the record straight. I especially enjoyed the byzantine comment about the CDC.

  27. I got sick in 1989. I was diagnosed in 1990 with CFIDS,Positive HHV6,High Epstein Bar antibodies, Positive ANA ,High Helper T and Low Suppressor T cells,Positive Epstein Bar Nuclear antigen, and EB early antigen, and Hashimotos .
    I used to attend seminars with Dr. Nancy Klimas who was on the forefront of CFS. University of Miami Immunologist.
    Wow, just in time for my 60th Birthday next year. :-( I gave up on it altogether ...and just pace myself,and any stress physical or emotional I am bed ridden .Not even FUN stress :-(
    So I assume with a retro, no cure, or can we use anti-viral drugs like Aids patients do ?

  28. Mindy,

    I have to agree with the earlier anonymous comment regarding the extremely high standards you have met in comparison to the NYT, WSJ and Washington Post.

    As always, you've gone beyond simply reporting. How do we get your work into the main stream media? You put them to shame.

  29. Thank you Mindy! You just answered my question about MLVs, you are brilliant and would put the mainstream reporters to shame!

  30. What was interesting was that in the conference it was noted that the patient samples were collected in 1990. The only "CFS" definition at that time was the 1988 Holmes definition. Several researchers have noted in the peer reviewed literature that the Holmes definition, like the Canadian, tend to select a much sicker subset. This makes the fifth "CFS" definition entered in the XMRV/MLV wars.

    However, in the actual paper, the authors suggest that all researchers adhere to the original 1994 Fukada definition from now on.

    What is also interesting and mentioned in the press conference is an accompanying editorial suggesting that giving patients retrovirus anti-virals would give researchers even more information. Although there is not enough science at this point to definitively say that these strains and XMRV cause disease in humans positive response to such anti-virals would indicate researchers are on the right track.

    The example historical example given was h.pylori in which antibiotics cleared it up at a time when ulcers were widely considered to be the result of stress.

  31. Dear Mindy,

    First-off thank-you for this tremendously informative and important article! Reads like a breeze and is by far the most thorough .

    Secondly, I have a question that refers directly back to your title "the same thing, only different":

    When one reads the study, the "MLV sequences" that this article found were related more closely to several polytrophic mouse retroviruses than to XMRV (though they were related to that too) -- if I am interpreting their phylogenetic tree correctly.

    So I am wondering, is it just the case that the "XMRV" up to this point is only one small genetic strain (i.e. just one "child") of a more genetically diverse infectious agent/family (sort of like there might be many HIV-1 strains to the single HIV-1 "family") or are we dealing with genetically & epidemiologically distinct "families" of infectious agents? (like in the relationship of HSV to EBV, for example)

    ((If it is distinct families, obviously that has a huge consequence in how the viruses got into the human population, epidemiology and so on.))

    Do you have information on which of these above viewpoints is being favored at the moment? Was it always clearly one "viewpoint"? (though obviously unclear enough to someone without a specialized background in Retrovirology)

    Looking back at the paper I was left with this sharp dichotomy and I wasn't able to see clearly which of the two alternate views this latest paper would favor:

    1.) The first alternative would be we are dealing with one genetic "family" of which XMRV is just a part, but which is a more diverse "family" than previously assumed.

    2.) The second explanation would be that we are dealing with several distinct groups: the MLV's this paper found, XMRV, etc, which are simply not all relatable back to a single agent/family (not relatable back to a single "family" in a way analogous to how various HIV-1 strains are ultimately relatable back to HIV-1).

    It only seems clear that both of these explanations would be mutually contradictory.

    Have you talked to any researchers on this matter? The one quote by Alter seems to suggest he thinks it's all "one family" but since that was on the topic of genetic diversity in XMRV specifically I'm not sure if that is a fair extrapolation of his quote.

  32. Wow, Mindy!

    Love your interview with Alter!

    Thanks so much for non-stop digging!

  33. Let's send Mindy to 1st Int'l XMRV conference, Sept 7-8: Fundraising effort starting now!

    Has anyone NOT seen Mindy's great reporting on ??

    Especially her most recent reporting on the NIH/FDA/Harvard paper that was posted on her blog and on the CFS forums seemingly seconds after 3 pm EST, on Aug 23rd, when this groundbreaking paper was made public? She had the background story for us on this paper, key interviews, everything, within seconds of the paper's release. Literally.

    Can't get better than that.

    So let's send her to the 1st Int'l XMRV conference, Sept 7-8: Fundraising effort starting NOW.

    Yes, I know she already said she is already going, whether or not we start raising funds for her hotel and travel and meals while there. But being an independent investigative journalist, as she is, is not like being a salaried or paid staffer/writer for a newspaper. There is a new trend in the world of blogging and investigative journalism, and it is that if you, the reader, want the reporter to keep doing her work, you help fund her work so she can eat (and pay for a hotel in Baltimore, where the conference is, which has to be about $150/night, I'm guessing).

    Because it is an all-PWC effort, and not exclusive to one forum, we'll likely never know how much we end up donating, as we won't be able to keep track. But I am sure none of the money we send Mindy will go to waste supporting her good muckraking work.

    Meanwhile, just to keep us all inspired and keep a fire lit under our donating butts, if you want, please feel free to let us know by posting on this thread AFTER you have donated to Mindy's site. Her donate button is on the right hand side of her blog:

    Let's send Mindy to Baltimore and the world's first XMRV conference so that *we* can get the best reporting from that highly important conference.

  34. i just donated $20 to mindy's website. i want to know what happens at that conference! don't you?

  35. At least now most doctors will believe that we are not crazy. I heard many years ago about a rerovirus causing CFS and it sounded plausible. Diagnosed in 2003, but had it for a few years before that, but when became paralyzed had a great internist who believed in CFS. Let's hope there is a cure or at least something to keep the syptoms at bay

  36. Top notch journalism. A joy to read - in content and style. Thanks for sharing your writing gift and for writing on a subject so important to us all.

  37. Thank you, this is the best article I have read about the release of this research. Excellent job. I appreciate your work very much.

  38. Harvey Alter is a pillar in virus research, his paper in PNAS is verification that some viral relationship has been seen in CFS/ME. The contribution of the organism to the disease is now open to further research both clinically and in vitro. In vitro neutralization of the virus may help in the clinical treatment of the disease.

  39. Exellent article. One thing i saw just dismissed tho was the said inability for a retrovirus to jump more then one speciesi think?...-take madcow diseasse/CJD-justyesterday on sky tv,s medical detectives it is surmised to have jumped possibley from sheep-as-' scrapies'-to cows/cattle...-Also CJD has allegedly affected cats from contaminated cat food(maybe dogs)?-and of course the impossible happened-it jumped to humans...we are sick of medical coverups-/pharmaceutical corruptions keeping us sick..thankyou mindy for this article!

  40. What's left to say after surviving ten years of ignorance and much worse please publish especially in the UK.

  41. Neat idea. Will Mindy simply be reporting on the goings on, or will she have the opportunity to ask questions?

    The idea of at least one person there who's willing to ask substantive questions makes me rub my hands together and cackle with glee.

  42. Yes let's send her to that Conference for XMRV absolutely, don't mind donating either. What an awesome article and great job, Mindi!

    I feel I want to be tested for the XMRV and the MLV. Been diagnosed with CFS and Fibromyalgia for about 18 months but have suffered with these affictions for I'd say close to 12 years. In fact, right about the time when I received a blood transfusion to treat the extreme anemia I had following acute anemia that developed during my pregnancy in 1998. (During pregnancy my hemoglobin had dropped below 7gm/dL and then way down to 5.9gm/dL after childbirth. ER doc said shocked "How the heck did you get here under your own power??")

    Anyway, I never did feel ok except for when the blood was going in (felt like I could race a marathon, I felt so good being transfused!). After that, however I got sicker, tireder, more mental fogginess, more achey, until now I can hardly walk with the other medical issues going on with me now.

    This makes me hopeful finally. That a cure or at least a good treatment is out there sometime in my future. YAY! Whoop, Whoop!

    Thanks again, Mindy, for a damn fine article that has made my day!


  43. The fact Dr. William Reeves of the CDC is now in charge of Mental Health Surveillance should mean lots of looking in the mirror. He needs to be fired, at the very least.
    I'm glad I found your site; as a freelance journalist and and compulsive researcher myself (CFS gives me too much free time), it's refreshing to see see such well-written information.

  44. "...let us know by posting on this thread AFTER you have donated to Mindy's site. Her donate button is on the right hand side of her blog:"

    YES! I just donated $20, go Mindy!

  45. I am so glad to see this study - I have had CFS since 1989 (remission thank god!) - I had begun to worry because I have not seen much news about it over the years. More important to make sure men can get hard-ons than to treat real problems these days! I was 18 when I got sick and had medicaid as insurance, so I was repeatedly told that I was depressed and that I needed to see the mental health dept. I was a distance runner and had amazing energy prior, and ended up with CFS/Fibromyalgia/Hashimoto's and an extremely high ANA titer. I am in remission from the CFS now, but I have never regained my ability to run or have that volume of energy. I have 2 children now and am able to work full-time again, but I am not the same person I used to be and I really hope that this study will push things further and eventually give people with CFS hope for a normal life and to get the old them back!

  46. Many thanks, Mindy. I read an article back in the 80s about the possibility that M.E./CFIDS was connected to a retrovirus, but then nothing until the recent reports on the XMRV virus.

    Those of us who have been suffering with M.E./CFIDS for decades are really tired of our illness being dismissed as 'merely psychological' -- as you quoted in your article "patients guilty of “maladaptive coping” and “escape-avoiding behavior.” " How totally untrue for most of the people I know with M.C./CFIDS use every ounce of energy they have to remain active and useful within their families and communities. This diagnosis (sic) is, and has always been, a 'cop-out' by the medical profession.

    My GP only starting believing in M.E./CFIDS in the last few months after the Red Cross banned blood from us. Before that, he was rude and dismissive, and totally uncooperative about my condition (unfortunately, there are very few GPs available in Victoria -- and none with a M.E./CFIDS specialty). I hope that this research will end, forever, the practice of doctors dismissing our condition as in the above quoted way (after decades of us experiencing that). One of the most common statements amongst M.E./CFIDS patients is 'If you weren't crazy before M.E., there is something really wrong if you aren't afterwards." -- that is, not only is the disease crazy-making; but even more so, the doctors (although many thanks to the doctors I have had along the way, who did believe in it and did their best to treat me)

    I hope that M.E./CFIDS will become a specialty amongst doctors who had done their homework and care -- and reports, like yours, will help that happen. Many thanks, again. Pashta MaryMoon

  47. Thank you so much for this article. You wrote it in such a way that even I, with my CFS brain can understand it. Thank you for helping to validate this dreadful illness.

  48. Thank you so much for reporting this in such detail. I especially appreciate you interviewing various scientists involved and quoting some of their comments. You asked great questions.

  49. Mindy, thank you for defending us from disgusting health 'terrorist' Borigini.

    Thank you for carrying the torch of Truth against such ignorance.

  50. >
    Dr. Jim Jones argued that illnesses such as CFS are “illness states” rather than “true diseases.”

    I was in the audience at the Lakeside Community Hospital in Incline Village on
    June 11th 1986 when Dr Jones came to "educate" us about CEBV Syndrome, apparently uncomprehending or oblivious that Dr Cheney had already found that EBV was not the cause of this mystery-malady at Lake Tahoe.
    Dr Jones started out by acting as if he took the illness seriously, then suddenly switched to blaming us for our predicament by saying:
    "But all of you brought this on yourselves by bad diet, cigarettes, alcohol abuse, drugs, overwork and stress." He continued, "I'm sure that if EACH and everyone one of you HONESTLY looks back in your lives, you will find things that you could have done better".

    One guy at the table in front of me stood up and launched a quote at Dr Jones that I'll never forget.
    He spoke loudly so all the audience could hear: "That's all a bunch of Horse S**T!"

    It was "HS" then... and it still is.

  51. Thank-you for your dedication and thoroughness in covering this - as far as I am concerned, this is the most informative article I have read on the release of the Alter paper, and to have such a skilled reporter presenting this information is fantastic. Thank-you!

  52. Thank you sooooooo much for this fabulously written report! I'm afraid I want worse for Reeves and those in his camp than just firing, but I won't go into THAT! Just so happy to hear that this nightmare of bedridden/severe ME could actually have an end some year, or at least some improvement. Just hopes it comes in my lifetime!

  53. Thank you mindy! God bless you!

  54. Please, let's not forget those that have been diagnosed only with Fibromyalgia. I have many of the symptoms which cross both CFS and Fibromyalgia, but only have a diagnoses of Fibromyalgia. I am very happy to hear that CFS is finally getting the recognition it deserves, but I am feeling a bit disappointed that the possible Fibromyalgia link is not also being discussed with just as much intensity. Especially as I keep reading that some are considering that these are actually the same syndrome.

  55. Thank you for shedding so much light on this potentially confusing turn. I learned alot.

  56. Mindy: Excellent job. You are a hero to all people with CFS.

  57. Hi,
    What a wonderful post. Exactly what I was looking for. (A good place to educate myself about the latest research on CFS).
    I've been thinking that CFS is a symptom of fibromyalgia, both of which I've been diagnosed with. I'm pretty sure I've been wrong.
    I'm glad to see this reseach, although I'll have to read this a few times to remember it well enough.
    I agree very much with your other commenters -- you did a great job sharing this important information. Thank you.

  58. Well, I wish Lo et al. could send some of their samples over to WPI for Xmrv testing. I don't know if their samples are compromised or if their Xmrv testing is not up to snuff or what.

    Conversely, did Lo et al. ever measure Xmrv in control samples from WPI?

  59. This is great to read. I am ill for over 10 years now ( I live in the Netherlands ). It's a shame that doctors in this country still say CFS is a psychological issue... I'm so glad that there is good research in other countries. People with CFS are ill...very ill and something really has to happen soon. If it's a virus indeed there needs to be a cure very very soon ! I just wish this would happen....people are suffering from this so badly..most people just don't understand. Give these people hope !! :-(


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