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NYT: Tuller: "Fallout from Fatigue Syndrome Retraction" and Science Times Podcast

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Feb 6, 2012.

  1. CBS

    CBS Senior Member

    New article published in the NYTs this afternoon as well as an accompanying podcast.

    The CFS portion of the podcast starts at 9:28 from the end of the audio. The podcast can be accessed on the same page as the article. I found the commentary on the podcast to provide a very fair and informative (if not a bit brief) explanation of the present state knowledge surrounding CFS.

    I'm very pleased that David Tuller has taken an interest in ME/CFS.

    ETA: Please try to look past the "double colon" in the thread title. Not sure that's allowed. Sorry.
    justinreilly, beaker and SOC like this.
  2. Esther12

    Esther12 Senior Member

    I agree. And he seems to be doing his own independent research, putting a lot of his time in to an area where he's unikely to get much financial return.

    It makes me feel better about the press, although it's sadly not surprising he's American rather than British.
  3. Firestormm


    Cornwall England
    NYT: Fallout from CFS Retraction is Far and Wide - David Tuller

    Fallout from CFS Retraction is Far and Wide - David Tuller

    6 February 2012:


    DASHED HOPES Before a legal showdown, a finding from Dr. Judy Mikovits at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., gave hope to desperate patients. Above, a culture in her lab there.

    When scientists reported in 2009 that a little-known mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition, the news made international headlines. For patients desperate for answers, many of them severely disabled for years, the finding from an obscure research center, the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., seemed a godsend.

    I remember reading it and going, Bingo, this is it! said Heidi Bauer, 42, a mother of triplets in Huntington, Md., who has had chronic fatigue syndrome since her 20s. I thought it was going to mean treatment, that I was going to be able to play with my kids and be the kind of mom I wanted to be.

    Patients showered praise on the lead researcher, Dr. Judy Mikovits, a former scientist at the National Cancer Institute. They sent donations large and small to the institute, founded by Harvey and Annette Whittemore, a wealthy and politically well-connected Nevada couple seeking to help their daughter, who had the illness.

    In hopes of treating their condition, some patients even began taking antiretroviral drugs used to treat H.I.V., a retrovirus related to the murine leukemia viruses suddenly suspected of involvement in chronic fatigue syndrome.

    More recently, however, the hopes of these patients have suffered an extraordinary battering. In a scientific reversal as dramatic and strange as any in recent memory, the finding has been officially discredited; a string of subsequent studies failed to confirm it, and most scientists have attributed the initial results to laboratory contamination. In late December, the original paper, published in the journal Science, and one other study that appeared to support it were retracted within days of each other.

    As the published evidence for the hypothesis fell apart, a legal melodrama erupted, dismaying and demoralizing patients and many members of the scientific community. Dr. Mikovits was even briefly jailed in California on charges of theft made by the institute.

    Im stunned that its come to this point, said Fred Friedberg, a professor at Stony Brook University Medical Center and president of the International Association for C.F.S./M.E., a scientific organization. This is a really sad unraveling of something that was perhaps going to generate a whole new direction in this illness.

    Despite the controversy, Dr. Mikovits is now supervising some lab work as part of a large government-sponsored study being spearheaded by Dr. Ian Lipkin, a leading Columbia University virologist. The study was established before the two retractions to examine the possible link between chronic fatigue syndrome and mouse retroviruses. Dr. Mikovits still hopes to replicate her original results, and many patients continue to believe fervently in her hypothesis; study results are expected early this year.

    She did not respond to requests for comment.

    An estimated one million people in the United States suffer from chronic fatigue syndrome, which is characterized by profound exhaustion, a prolonged loss of energy following minimal exertion, swollen lymph nodes, sore throat, cognitive dysfunction and other symptoms. Experts now generally believe that one or more infectious agents, or perhaps exposure to toxins, set off a persistent, hyperactive immune response the likely cause of many of the symptoms.

    Although the Centers for Disease Control and Prevention first investigated the illness in the mid-1980s, the agency has not been able to find a cause, identify any biomarkers or diagnostic tests, or develop effective treatments. Patients have long accused the mainstream medical and scientific community of neglect and abandonment. Many say that the C.D.C. has largely treated their disease as a psychological or stress-related condition.

    A 2010 paper from the agency, for example, galled patients with the conclusion that they suffer disproportionately from paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders.

    Dr. Mikovitss research, done with collaborators from such prestigious organizations as the National Cancer Institute and the Cleveland Clinic, seemed to vindicate the concerns of many with the condition. The scientists said they had found that 67 percent of patients sampled were infected with a mouse virus called XMRV, compared with 4 percent of the controls.

    If for years youve been told that your illness is all in your head and then youre being told, Look, we found something concrete and very substantial, then of course there will be rallying behind that, said Rivka Solomon, 49, a Massachusetts playwright who has been largely homebound with the syndrome for more than 20 years.

    The publication of Dr. Mikovitss work brought immediate attention, much of it unflattering. Other scientists soon published studies challenging the findings, and Science issued first a statement of concern and then a partial retraction of the original study.

    Even as her work was publicly debated, the blunt and feisty Dr. Mikovits raised eyebrows among other scientists for stating at conferences that murine leukemia viruses could be related to autism. Perhaps more disconcerting, a commercial lab associated with the Whittemore Peterson Institute began marketing screening tests for XMRV, the hypothesized cause of chronic fatigue syndrome, costing hundreds of dollars. The business enraged many patients once they realized the results might be meaningless.

    Amid mounting concerns, Dr. Mikovits left her position as research director at the institute in a dispute over management practices and control over research materials. The institute sued her, accusing her of stealing notebooks and other proprietary items. Dr. Mikovits was arrested in Southern California, where she lives, and jailed for several days, charged with being a fugitive from justice.

    After her split with the institute, Dr. Mikovits denied having the missing laboratory materials. But a lab employee, Max Pfost, said in an affidavit that he took items at her request, stashing notebooks in his mothers garage in Sparks, Nev., before turning them over to Dr. Mikovits.

    At one point, Mikovits informed me that she was hiding out on a boat to avoid being served with papers from W.P.I., Mr. Pfost said in the affidavit. Some lab items have since been returned.

    In December, a judge ruled against her in the civil case. The criminal case is pending; another hearing in the civil case is in late February. But in late January, the Whittemores were themselves accused of embezzling millions of dollars in a lawsuit filed by partners in Mr. Whittemores real estate business.

    The Whittemores, who have countersued, maintain their innocence of the embezzling charges, and Annette Whittemore stated in an e-mail that institute research continues.

    The events of the past couple of years, though disheartening to chronic fatigue syndrome patients, may have a silver lining: Research into the disease, much of it privately financed, is ratcheting up.

    A new research and treatment center has been created at Mount Sinai Hospital in New York. The Hutchins Family Foundation is investing $10 million in the Chronic Fatigue Initiative, an effort to find causes and treatments that has recruited top researchers from Columbia, Harvard, Duke and other institutions.

    The disease had languished in the background at N.I.H. and C.D.C., and other scientists had not been paying much attention to it, said John Coffin, a professor of molecular biology at Tufts University. This has brought it back into attention.

    Dr. Coffin, who at first supported the mouse retrovirus theory but later disputed it, noted that the illness does seem to have characteristics that would suggest infectious origins and that other retroviruses could be involved.

    Despite the personal and professional setbacks for Dr. Mikovits, many patients, like Ms. Solomon, continue to believe that a retrovirus is causing their illness.

    But even if the retroviral research does not pan out, her work, and the publicity it has brought to our illness, has forever changed the landscape, said Ms. Solomon.
    taniaaust1 and justinreilly like this.
  4. currer

    currer Senior Member

    The association of MLV infection and CFS/ME is controversial because of the question of HOW these widespread laboratory contaminants, created by zenografting human tissue into mice, got into humans.

    This is the real underlying controversy and I note that David Tuller ignores it, wheras we have been discussing it endlessly on this forum for the past couple of years. It is not a difficult point for Tuller to understand, so why pretend this problem is not there and XMRV/HGRVs are like any other natural wild virus?

    Has anyone ever seen this question publicly discussed in print in magazines or journals?
    Or are the public to be kept ignorant of the real concerns arising from the finding of MLVs in humans?

    The debate is fraudulent if this question cannot be asked or discussed.
    Angela Kennedy likes this.
  5. shiso

    shiso Senior Member

    I thought it was a really good article and podcast - informed and digestible for NYT readers, giving a real sense that this is a serious disease. From the podcast questions and answers, you realize how hard of a task it is for someone who is informed about the complexities of the political, scientific, and clinical landscape of the disease to answer seemingly straightforward questions like, "are there treatments?"
    beaker likes this.
  6. Christopher

    Christopher Senior Member

    I am assuming he had the choice of towing the line regarding this or bypassing it altogether. Whether we like it or not, and whether XMRV is in us or not, we aren't going to get what we want from those in power if we keep focusing on it. It's just beating our heads against the wall, and with our limited energy, not a good choice.
  7. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    I'm very glad David Tuller is covering us. In this extensive interview he states what may have been his original motivation. (And I hope he got more than $21 for this story LOL)

    "I had a friend who was diagnosed with CFS about 20 years ago. I knew him before he developed CFS and I watched him all these years"

    I think his following paragraph could be clearer that Mt. Sinai ME/CFS research center and the Chronic Fatigue Initiative are two separate organizations.

    "A new research and treatment center has been created at Mount Sinai Hospital in New York. The Hutchins Family Foundation is investing $10 million in the Chronic Fatigue Initiative, an effort to find causes and treatments that has recruited top researchers from Columbia, Harvard, Duke and other institutions."

    Chris, The Patient Advocate, wrote a blog about the exciting new Mt. Sinai group.

    "With a recent generous gift to Mt. Sinai Hospital by one of Dr. Enlander's patients, Dwight Merriman, Dr. Enlander wasted no time in getting this research and treatment center at Mt. Sinai underway."
    beaker and anne_likes_red like this.
  8. Ocean

    Ocean Senior Member

    I liked the article. As for this from the CDC, "A 2010 paper from the agency, for example, galled patients with the conclusion that they suffer disproportionately from paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders. Gee, how nice.
  9. Firestormm


    Cornwall England
    There was a podcast?! Can you let me know where it is please? Unless I am being really dense (quite possibly) I can't see it anywhere..... :eek:
  10. Sam Carter

    Sam Carter Guest

  11. Firestormm


    Cornwall England
    Hey thanks Sam! Appreciate it. Didn't know such a thing existed :victory:
  12. Firestormm


    Cornwall England
    Ok so I have trouble listening and absorbing stuff, hence the transcripts I knock out from time to time. Here's an attempt at the podcast.

    Usual caution about my talents in this regard i.e. what follows might not be a totally accurate version of the conversation - though I am pretty sure on this one :angel:

    Science Times podcast Tuesday February 7th with David Corcoran of the New York Times:

    David Corcoran [DC]: For this weeks health update were joined by reporter David Tuller, whos been following the tangled developments in the search for a cause of chronic fatigue syndrome. David welcome to the podcast.

    David Tuller [DT]: Hi, thanks David.

    DC: So, what exactly is chronic fatigue syndrome?

    DT: Well chronic fatigue syndrome is really complicated, is probably an immunological and neurological disorder.
    It seems to be probably triggered by an infectious illness of some kind, or multiple infectious illness, which seems to illicit a kind of immune response that is sort of hyperactive and goes on and on and doesnt shut itself off which is probably what causes all the symptoms.

    DC: Its quite common isnt it?

    DT: Well its hard to tell how common it is because its a little bit hard to define since it can look like a lot of other things. But the average estimate that people talk about is about 1 million people in the US. And some of those are really, really severely sick.
    Really disabled, cant leave the house, may be not able to tolerate light, heat and so on and so forth.

    DC: For many years there was just no such diagnosis as Chronic Fatigue Syndrome. When was it officially recognised by doctors?

    DT: Well I cant even say that its officially recognised by doctors at this point because many still think of it as a psychological or psycho-somatic kind of illness, but in the US there was an outbreak series of outbreaks of what appeared to be associated with Ebstein-barr virus which causes mononucleosis and, so, those were the first investigations of what the CDC then calls Chronic Fatigue Syndrome.
    There had been earlier outbreaks, similar outbreaks, of a lingering or long flu-like illness from which people did not recover, in the Thirties; in the Fifties there was a big outbreak like that in London. So there had been prior episodes the CDC just gave it a different name Chronic Fatigue Syndrome than other people had called it earlier.

    DC: So, now we have the official diagnosis of Chronic Fatigue Syndrome; why is it so controversial?

    DT: Its really controversial because in all the years of research its been very hard to come up with a biological marker. When [?] most diseases, [e.g.] HIV or Tuberculosis, you can do a lab test and you can identify, Yes this person has it or this person doesnt.
    Something thats a syndrome as in CFS is a collection of symptoms and so its defined by the symptoms and if you dont get the definition exact if its hard to describe in some ways and doctors arent sure how to identify it (and researchers also) then its very very hard to get consistent findings across studies; because everyone is using a somewhat different definition of the illness.

    DC: And I guess its possible that there could be multiple illnesses involved and therefore different causes, right?

    DT: Yeah, I think basically what seems to be the emerging perspective is that its a cluster of illnesses. So different people are going to have different pathways to the same kind of syndrome or to the same kind of hyperactive immune response that theyre getting.
    So for some it might be one or more infectious triggers, it might be an episode of mononucleosis, it could be exposure to some environmental toxins; they dont really know and I think theres a lot of intensive research now trying to look at sub-categories of patients.
    Because again, when you have a lot of patients coming to it [the same diagnosis] from a different cause it again is very hard to isolate one particular [common] cause. So I think thats been a problem as well with the epidemiology.

    DC: So, as you report in your article there was quite a lot of excitement back in 2009 when a study in the Journal Science identified a possible cause for Chronic Fatigue Syndrome. Can you talk about that study and what the findings were?

    DT: That was a really high profile study, because Science is the most prestigious, or among the most prestigious, Journals.
    This was study that found that about two thirds of a sample of people with Chronic Fatigue Syndrome were harbouring a retrovirus a mouse leukemia retrovirus and 4% of the control population.
    And so for people with Chronic Fatigue Syndrome who have long been used to having their illness mocked or ignored or treated like something faked, this was really, just a wonderful thing to read about this and to hear about this: that someone had pinpointed something that maybe could be a causal factor.

    DC: And, whos the researcher who led this study?

    DT: It was an interesting development, because often these studies would come out of well-known government agencies, or well-known academic centres, and this was a study that came out of a small research centre the Whittemore Peterson Institute in Nevada which was founded by a wealthy couple whose daughter was sick with Chronic Fatigue Syndrome.
    The researcher on the article was a former researcher at the National Cancer Institute named Judy Mikovits. And so once the study was published really its hard to overstate the degree to which the patient population has felt ignored and subsequently the degree to which they adopted Dr Mikovits as really a patron saint in a way, because she was really taking their illness seriously.

    DC: And then what happened?

    DT: Well, I mean over the last couple of years its been a real rollercoaster. Most other studies were not able to sustain the findings they couldnt find what she had found. One other study found something comparable which was viewed as supportive of her findings, and that was a high profile study also. But both of those studies were retracted about a month and a half ago by the respective Journals, and so the scientific base for what they reported is no longer in existence at this point.
    Even so there is a study supported by the National Institutes of Health thats a very high profile and large study thats continuing to look at the issue as to whether these mouse leukemia viruses are related to Chronic Fatigue Syndrome. That study, which should have results coming up pretty soon, will be looked at I think as kind of the definitive look at this particular question.

    DC: So it sounds like quite a tangle, but as you say were not exactly back at square one even with the retraction of these studies, theres another effort underway to find causes for Chronic Fatigue Syndrome and apparently [the possibility of???] some promising results ?

    DT: Yeah, I mean its been a very interesting phenomenon because I think while a lot of this was going on I think the patient community was feeling Its this retrovirus or its nothing.
    You know, and they were really worried if it turned out not to be this retrovirus it would be the end of any attention for their illness; but in fact what seems to have happened is that through this whole debate a lot of researchers who were not necessarily interested in the illness before or who may have dismissed it themselves started looking at some of the epidemiology and some of the scientific studies about what these people have going wrong with their bodies and came to realise that, yeah, this may be a serious thing.
    And at the same time I think some private philanthropies who may have family members who have the illness or friends have come to see that the government funding has really been woefully lacking and have stepped up to the plate to try to fund some real effort. So there really are some heavy hitters now involved and apparently committed to looking for causes and treatments, and hopefully that will continue.

    DC: And meanwhile what are the prospects for people with Chronic Fatigue Syndrome are there any treatments now that are effective?

    DT: Its been really difficult [to find treatments?], there are still some people who believe in retrovirus theory and are trying anti-retrovirals. There have been some small studies with anti-virals because a lot of people really do think that, not necessarily a retrovirus, but some kind of viral infections are causing it. So thereve been small studies of people on anti-virals for extended periods of time which have shown some results. There was a small study in 2010 that showed some promising results. But theres not really anything hard and proven that people can get.
    I think often that doctors who are expert in treating this, look to provide symptomatic relief, rather than necessarily feeling that they can treat the underlying cause because they dont necessarily know what the underlying cause is.
    There are doctors that have had sporadic and anecdotal success with some patients and I think part of the ongoing effort now is to not only identify the pathogens at play but also, obviously, to identify some kinds of treatments that can be used to fight them.

    DC: So, to be continued David Tuller, many thanks for following this story for us.

    DT: Ok, thanks David.

    DC: David Tuller is a medical reporter, writes for the New York Times.
    Sam Carter likes this.
  13. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I cant listen to podcasts and didnt manage to read it all but thought its great what I did managed to read. I really liked the part where he said that many doctors still dont recognise it.

  14. Ember

    Ember Senior Member

  15. *GG*

    *GG* senior member

    Concord, NH
    I am not sure of what to make of XMRV and recombination etc..

    But I don't get your comment that I bolded. So are you saying we will get what we want by NOT "focusing on it"?

  16. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    It is not XMRV research that we should be focusing on, but high quality research in general. By continuing to focus on now-unlikely hypotheses such as the XMRV link, it discourages researchers from considering new hypotheses.
  17. barbc56

    barbc56 Senior Member


    I think this is the bottom line scientist need to take. Why keep beating on a dead horse? We need to look in other directions such as why some of us with ME/CFS get viruses that other people don't. Just because XMRV or whatever is the PC name at the moment, does not mean other viruses can't be looked at.

    What I find interesting is for such a disparate condition why do people think still cling to the idea that there is one cause and one cause only?

    Barb C.:>)
  18. SOC

    SOC Senior Member


    Because, as with HIV infection, the major symptoms depend on which secondary infections the patient has. Retroviral infection of the immune system reduces immune function and leaves the patients open to many and various infections. It is the secondary infections that kill HIV patients, not the HIV directly. People were saying exactly what you said about ME/CFS about HIV/AIDS patients in the early days. Retroviral infection could explain how we can have the same disease with different symptoms.

    For clarity, since I don't want this to degrade into an XMRV argument -- I think it's unlikely that XMRV is the cause of our illness, but not impossible. I think it's possible that another retrovirus is responsible. I also think it's possible that some other virus (known or unknown) is responsible. I suspect some genetic factor plays into it, but only as a part of the problem. My point is that a retroviral cause could easily manifest in many different symptom groups, NOT that XMRV in particular is the virus in question.
    justinreilly likes this.
  19. Mark

    Mark Former CEO

    Sofa, UK
    Many XMRV advocates have got tired of answering questions like this over and over again. I don't take any dogmatic position on XMRV, but I do post occasionally to challenge arguments that are especially illogical, and this is one such argument, which I have unfortunately seen repeated again in the online press recently.

    "ME/CFS" is obviously a disparate condition if you use the Oxford Criteria (ie anyone with unexplained long-term fatigue). It is far, far less obvious that ME, as defined by Byron Hyde, or by the CCC or ICC, is a disparate condition. That idea is both an assumption and a self-fulfilling prophecy. If you consider the classic outbreaks of ME, it is quite obvious that there must be some fundamental cause for those outbreaks. Even if the outbreak requires several conditions (eg genetics + mold + EBV + XMRV), one of those conditions could perfectly well be a certain type of virus or retrovirus. It could be a pathogen that is near ubiquitous, like EBV, in combination with some other factors. In such a scenario, XMRV could still be a common factor for most or all patients, just like EBV is. So it is entirely plausible that most or all CCC ME patients could be infected with (eg) XMRV, and this plausibility is obvious to anyone who has thought seriously about this question and is not blinded by their own theories or assumptions.

    One of the most ignorant arguments against Lombardi et al that I have seen is this claim that it was not ever a plausible hypothesis because ME/CFS is known to be a disparate condition. This is a ridiculous argument on so many levels, but the most obvious one is the definitions used. Lombardi et al used some of the strictest conditions for ME assessment ever seen. All patients fitted CCC, and Fukuda, and presented with profound disability, and they were drawn from expert ME/CFS clinics in outbreak areas. These criteria were, of course, criticised immediately by the psychiatric school, using misleading spin and claiming they weren't using the right 'internationally recognised' criteria. But in fact they used the most strict criteria possible, and they had the best possible chance of finding a coherent patient group. In crude terms, they were studying ME, not CFS.

    There is no reason whatsoever that I'm aware of to assume that the core, profoundly disabled, CCC criteria ME patients necessarily have a 'disparate' group of causes for their illness. To assume that is to beg the question: it assumes that either (a) we do, actually, know the causes (and where is that proven?), or (b) we know that there are a whole load of completely different illnesses under this name, and nobody using specific strict criteria can possibly find a well-defined subset of the "CFS" giant dustbin.

    Consider this: If so much really is known about the allegedly disparate causes of ME/CFS, why is that knowledge not firmly and indisputably established in the scientific world? Or are those disparate causes and symptoms really just a variety of known factors that can trigger (not cause) the condition, together with the effect of widening and widening the definitions until no coherent patient group can be identified?

    If we accept that the correct definition of ME/CFS is an umbrella diagnosis that can't ever be subdivided into illnesses with identifiable causes, we are accepting that there will never be any scientific progress in understanding our illness. So to throw the question back: Where is the evidence that strict CCC-defined ME is a 'disparate' condition that can not have a single cause - and cannot even have a single common biological factor? And if that is true that there can't be a single common factor, how is it ever going to be possible to produce research results that identify the true nature of the illness?
  20. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Mark, I mostly agree. Here is one possible reason for heterogeneity: only two thirds respond to Rituximab. What if two thirds have one disease or several similar diseases, and the other third have one or more different diseases? I do agree that epidemics offer clear unambigous cases for research. I also think that if the new Jason et. al. paper works, then every patient in a good study can be categorized several different ways, and we will finallly have ways to validate some diagnostic criteria. I once said this about PACE, they missed an opportunity big-time. They should have gathered enough data to test every diagnostic subgroup we know of. Bye, Alex
    wdb likes this.

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