Hosts: Vincent Racaniello and David Tuller
On episode #119 of the podcast This Week in Virology, Vincent and journalist David Tuller converse about the state of science reporting by the press.
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Links for this episode:
- The four XMRV papers in Retrovirology (one, two, three, four) and a commentary
- David’s recent coverage of ME/CFS in the NY Times (July 2010, August 2010, January 2011)
- MRSA (methicillin-resistant Staphylococcus aureus): The press’ mea culpa
- TWiV on Facebook
Vincent, thank you for a fantastic interview with David Tuller. You were mentioning Dr Mikovits presenting her data to an audience but not publishing. Of what many people hear, WPI and Judy has a very very difficult time publishing. I have heard she has many papers in her drawer that she can’t publish. Why, I wonder would that happen?
Lombardi et al. did not use the 22Rv1 cell line. So how could XMRV have come from that cell line? Also, there are samples that have tested positive that were taken in the 1980s. 22Rv1 dates from 1993.
You talk about peer review again. Amazingly I have heard Huber, Coffin and McClure discuss results before publication. So why are you only complaining about one researcher doing this?
How about we call it by the name it always went by? Myalgic Encephalomyelitis, but don’t use the CDC definition to make ME disappear into the symptom chronic fatigue.
I did not conclude that XMRV came from the 22Rv1 cell line. The
similarity between viruses from patients and 22Rv1 cells needs to be
explained in some way. One way would be to identify additional XMRV
isolates with greater variability. As for pre-publication results –
I’m not complaining, just stating what needs to be done for the field
to go forward – publish the work. Those scientists you mention do
discuss their work before publication, but eventually the papers are
published.
I can’t speculate on why Dr. Mikovits cannot publish her findings. But
here is how publication of scientific work proceeds: you write up your
findings and submit it to an appropriate journal. If it is a high
profile journal (Science, Nature, Cell) it might not be sent out for
peer review. If it is, they may reject the paper because the data do
not support the conclusions, or they may ask for additional work.
Unfortunately, the decisions at many journals are made by editors who
work for the journals, and who are not intimately familiar with the
research. In some cases, scientists are responsible for all decisions
on manuscripts. For example, Journal of Virology reviews most
submitted manuscripts, and the reviews are done by scientists. The
editors are working virologists who make the final decision on the
paper. If a paper is reviewed and rejected, it can be sent to another
journal. If it is reviewed and more work is requested, that can be
done, or else the authors can argue why the work is not needed. In any
case, there are many journals where the results of virology research
can be submitted; there is no reason for manuscripts to sit in a
drawer. If you are persistent, you can get your work published.
I do realise that you did not, but it is helpful for others listening to your podcast to know this information. I’m certain that the work being discussed in conferences will be published soon. Sorry, if I implied you did, that was not my intention.
Thank you for covering this topic.
A good example of the damage the Wellcome Trust press release has caused can be seen in a recent email response from the Department of Health in the UK. In which they state they have been reliably informed that methodology is not the reason for the different results, and that PCR is the most sensitive assay. This is despite the results of Mikovits et al. which demonstrates PCR to be the least sensitive assay, and the work of Danielson et al. that shows recovery of wild type XMRV by PCR using primers constructed to detect the gag gene sequences of the VP62 clone is impossible even in people known to be positive using other PCR primers.
That is only how it is supposed to work.
Vincent, thank you for this information. Obviously Judy is aware of that information because she successfully published in Science, of what I understand the most prestigious scientific journal in the world.
I am biased because I am a housebound patient, going through loads of doctors that have never learnt ME/CFS in school and “it” not being a speciality, specialists are just plainly saying “it”‘s not their department. Even immunologist (other than the well known ME/CFS and immunologist Nancy Klimas in Miami) can’t make sense of cytokine profiles of ME/CFS patients.
I personally think that editors and peer reviewers have reservations about reviewing and publishing unusual findings about ME/CFS. They hear “chronic fatigue syndrome” as a disease that doesn’t really exist, fake or “yes I am tired too”. Perhaps there is even pressure from Wellcome Trust and the likes not to publish such information. You may, or may not, know there is a gag of publication from a scientific committee in the UK that filters all the information. One of the member of this committee is Simon Wessley who thinks that CFS is a psychiatric illness. So he was more than happy to release the Wellcome Trust press release but other XMRV papers do not go through.
Another example of biases against CFS patients is having Myra McClure appointed on a committee at the NIH that will review CFS grants. She is a retrovirologist who hasn’t found XMRV either in their CFS cohort or in controls. She, as you know only did PCR, which was no replication of the WPI study, and vowed never to get involved with CFS patients again. Now, your US government will be paying a flight to meet with the committee and review grants from researchers that are interested in XMRV- She didn’t find it! Why on earth did they pick someone that couldn’t find the retrovirus to review the already rare grant applications for ME/CFS?
Mary Schweitzer, PHD and also patient with ME/CFS eloquently wrote about this appointment:http://slightlyalive.blogspot.com/2011/02/myra-mcclure-and-nihs-sep.html
Science and politics don’t mix well I am afraid. It become criminal when human beings have been in the midst of that for the last 30 years.
Related content: I really appreciated David’s point of view as he lived through the HIV epidemics of the 1980’s and can relate to what patients with CFS can possibly go through.
Thank you for sharing science to the general public.
Professor Racaniello
It was recently discovered that Myra McClure is on the CFS SEP, even though she has declared herself out of the disease. Simon Wessely has also claimed this himself in the past, so it’s a well know tactic. Would it be possible for you to find out if the new reports that she has left the SEP and indeed the study of ME/CFS are true? As most people would be very pleased if she has.
Thank you.
Thank you for this interview. Very interesting and informative. I am not as confident as you are, Vincent, about the science always sorting things out. Maybe eventually — but POLITICS and MONEY have a lot to do with any research associated with “chronic fatigue syndrome.” It’s been that way since the CDC gave us that very misleading name. They continue to study this disease as a psychosomatic illness and even “knew” they would not find XMRV before they tried. I want good research, but it’s not getting the funding that it needs.
I wonder if journals are being extra cautious because of the contamination issue. They’re hesitant to publish anything until it’s really been locked down, so papers that would normally be published and getting held up. Mikovits etc might also feel that if they moved from Science to a much less prestigious journal to get their work out, this could be interpreted negatively by critics too.
Thanks for the podcast. I think Tuller was able to touch on the social, moral and human side in a way that a lot of scientists have not wanted, or not felt able to. When the evidence is as uncertain as it is for CFS the scientific approach is unable to provide us with much information about how we should be acting and behaving towards one another right now. That Tuller was a gay man of his generation may have provided some insight into the way CFS patients can be treated.
Test that should be used to help diagnose ME/CFS
Abnormal spect scans
excercise tests carried out 24 and 28 hours apart
A characteristic TH17 biased immune system
Deficiencies in Mitochondrial function evidenced by abnormally low ATP production and raised anti cardiolipin antibodies
Why are these being ignored by the CDC? This isn’t idiopathic fatigue or fatigue of a psychological origin.
Thanks for continuing to cover this important issue! I too wish journalists would think before they publish on science. Its easier to report accurately to begin with rather than to retract a inaccurate sensational headline after the fact.
Hi Dr. Racaniello,
I wanted to comment on one possibility that has been overlooked about the source of XMRV in the 22Rv1 cell line. You state, echoing Hue et al (2010), that the most likely source of the 22Rv1 virus was its passage through mice; however, bear in mind that this tumor cell line originates from a single prostate cancer patient. If XMRV is associated with prostate cancer, or at least demonstrates tropism for prostate tissue, is it not more likely – in the context of all available evidence, such as the inability to find XMRV in any laboratory mouse strain – that the source of the virus was the human tumor? In that case, wouldn’t one expect a human XMRV strain from 1993 (the year 22Rv1 was developed) to be ancestral to more recent isolates? Hue et al assumed that 22Rv1 was a murine contaminant and that therefore its ancestral position, according to their Bayesian phylogenetic analysis, relative to human XMRV isolates suggested that the latter were all contamination artifact as well. As you point out, one weakness with this argument is that they based their analysis on a limited number of samples exhibiting the limited genetic diversity of published sequences in this new area of research… but another weakness is obviously the assumption that the virus came from cell line passage through mice at all.
An organisation like the BBC had no excuse to run the article they did. It was two days before any comment other than those from the Wellcome Trust press release were sought. It had nothing to do with money constraints or training, and was either down to laziness or bias due to the Science Media Centre through which all science stories in the UK are filtered. With Simon Wessely as a member.
Hi, Vincent, thanks so much for this program. Listening made me quite emotional – you guys have open minds and that is so refreshing.
Regarding the name thing, CFS is a lousy name, David’s right that it does not reflect the reality of this illness at all. Patients in England, and now in the USA, tend to call it among themselves ME – pronounced Emmie (like the film award). We recently hear the CFSAC and NIH using ME/CFS – a pain to type and a mouthful, but at least better than our slave name.
ME stands for Myalgic Encephalomyelitis, and if you know your medical terminology, and the illness, you’d know that’s a pretty accurate description.
I’ll be back often – I’ve just found your virology course. You’re great!
Good interview, thank you. We hopefully get the answer to the big XMRV question this year.
Hi,
After listening to this podcast, it semed that you are both puzzled as to what happened with the retroviral evidence found over two decades ago.
If you are both truly interested in waht happened and why I suggest you read Hillary Johnson book OSLERSWEB here site is here, http://www.oslersweb.com/
I hope you both read it, it would most definatly help in David’s course for his students.
I think this book will eventually be on the reading lists of all, public health and medical student courses in the next few years.
Thanks for the great podcast. It is encouraging to hear about the synthesis of health and journalism programs by David Tuller. Good to hear you might look into the same at Columbia. I wish more programs would be cross diciplinary. I am interested in health politics and having a difficult time trying to formally incorperate evolutionary sceince with my Political Science degree. I think epigentics has the potential to transform medicine and related politics, so education in evolutionary science is critical. Not to mention political theory is based on evolutionary theory in conjunction with other elements of science.
You mention science is self-correcting. This is market economy term and I do not agree. The idea of self-correction assumes science is objective. There is too much evidence that XMRV and other science is choc-full-of- value. Of course, we know from the near collapse of the global economy the idea of competitive forces self adjusting is at best a political myth. I think if we rely on self regulation in science this wil be disasterous for ME patients like the collapse of the housing market was millions of U.S. homeowners.
Thanks for the insight into jouranlism and science. I enjoyed my time listening to your show and learned something. Many thanks to Mr. Tuller if he is reading this blog for his insights!
Unfortunately as mentioned in the podcast it takes funding of the science in order to get to a place where the science can be published. Without funding any area will remain a “mystery.”
vincent, thanks for interviewing david tuller. please keep talking about me/cfs. hopefully you will get a chance to interview dr. mikovits. would love to hear a discussion with the dr. ruscettis also. oh, how about dr alter and lo too!!!!
please no more of alan dove’s misinformed views on me/cfs….. : )
david, thank you for making me/cfs patients and their suffering real to a broader audience. why don’t you write your 3 related papers for your “doctorate” on xmrv or me/cfs…kill 2 or 3 birds w/one stone.
regards, lisa (suffering from me/cfs for 8 yrs…impatient to recover my life)
Yes. In addition to all the papers (except WSJ and NYTimes) parroting the misrepresentation from the Welcome Trust press release that XMRV does not cause ME, the UK National Health Service, put did the same on their site! This is just one more attack on the science in the 25 year war on ME science by the UK and US govts.
There has always been a bias against real ME science and for fake ME science. It took Komoroff, somewhere around 5 years after first submitting his rigorous landmark study of the Tahoe cohort to finally get it published. Elaine DeFreitas couldn’t get her follow up work to her discovery of “CAV” retrovirus published. Nothing new.
Prof. Racaniello and Mr. Tuller,
Thanks so much for this wonderful podcast. It’s so great that Mr. Tuller has the skills and will to question the propaganda that comes out against real ME science. The whole anti-ME patients and anti-ME science history has often been compared to how CDC didn’t respond to the AIDS crisis. An internist I know, who was head of the response to AIDS by one of the most affected states said to me “CDC’s doing to CFS just what they did AIDS; they put their worst people on it and ignored it as long as possible. The only thing with AIDS is people started dying and they couldn’t ignore it anymore.” ME kills less often and in a less visible way than untreated AIDS. This is a blessing and also something of a curse. Wondering if Mr. Tuller can expand on the similarities between our struggle and that of AIDS patients; maybe in a future Times piece or another appearance on twiv.
This was an absolutely amazing episode, so i don’t want to focus on any negatives, but let me mention about Mr. Tuller’s saying that if the XMRV connection and causation pans out it probably would help a subset of people who describe themselves as having “CFS” and who know how many of these people are really just depressed, etc. First, everyone- researchers and clinicians- should be using only the Canadian definition of ME. Fukuda does not mandate Post exertional morbidity/malaise which is the sina qua non of ME. To my knowledge, only people with mitochondrial diseases like ME have PEM. Exercise helps all other fatiguing conditions, especially depression. Only 15% of ME patients in the US are diagnosed. There is only a quite low percentage of people who are diagnosed with Fukuda “CFS” (ME) that do not have it. I’ve never met anyone who has diagnosed themselves with ME (“CFS”). We are not a motley band of tired people, we have a discrete neuro-immune disease. (though there is confusion in the UK because psychiatrists there have tried to define “CFS” there as mere idiopathic CF)
btw, Prof. R., I really like how you’ve started to use “ME/CFS”; pls keep it up.
Anyway, thank you again!
Let me clarify on the point of diagnosis. One of my points that I didn’t really make clear is that there is general agreement that the Canadian definition is extremely accurate and diagnoses no or very low false positives. Everyone should therefor use this definition.
Saying who knows what’s in the group of “CFS” people, prob some just have depression, some just have idiopathic fatigue, etc. is like saying “who knows what’s in this population of people who call themselves ‘people with Multiple Sclerosis’ prob some people who are just depressed or tired. No. ME is a discrete neuro-immune disease just like MS, Lupus, etc.
ME is probably not discrete though. The reason why it hasn’t been ‘solved’ is likely because it is in fact multiple diseases. If the research funding was in proportion with the economic costs, then sub-typing based on bio-markers would become a reality.
In terms of economic costs, this is the reality:
$51 billion economic costs – Resch et al., Cost Eff Resour Alloc 2011
$19-24 billion (different samples) – Jason et al., Dyn Med 2008.
Annual NIH spending on CFS: $4-5 million.
Comparison with other diseases:
Obesity – $59 billion economic costs (inflation adjusted) http://www.ajcn.org/content/55/2/503S.short – $780 million in NIH research spending
Autism – $38 billion economic costs (inflation adjusted) http://archpedi.ama-assn.org/cgi/content/full/161/4/343 – $143 million in NIH spending
HIV/AIDS – $43 billion (inflation adjusted) http://journals.lww.com/jaids/fulltext/2006/12010/the_economic_burden_of_hiv_in_the_united_states_in.12.aspx – $3,180 million in NIH spending
Diabetes – $174 billion – http://care.diabetesjournals.org/content/31/3/596.abstract – $1,080 million in NIH spending
Note, the above studies differ substantially in methodology and it is not unreasonable to expect costs to be increased or reduced by up to a factor of two. Those studies were the first studies that I found that looked to have decent estimates.
If CFS had the same ratio of funding to Diabetes, or Autism, research funding would be in the$100-300 million range – up to 60 times the funding. Note also, that Autism is also under-funded based on the economic cost comparisons.
This is the message each and all CFS sufferers should be shouting. There is a great discrepency beteween economic costs, disability and funding that must be rectified!
One link I would like to add is a comment on one of the Retrovirology papers that covers a lot of the literature http://www.retrovirology.com/content/7/1/108/comments . Also the Lombardi groups Addendum to the Science study is not cited often http://www.landesbioscience.com/journals/virulence/article/MikovitisVIRU1-5.pdf , which shows the highest percentage of positives is found by co-culture with LnCap cells (89%), next serology (82%), with unstimulated PBMC at 7%. It is frustrating for patients that many scientists have not read the ME/CFS literature and do not know the immune abnormalities of patients, and many doctors have not read the XMRV studies or the literature. Patients have more time to do it.
There also seems to be a code of not criticizing other scientists, so no distinction is drawn between the positive studies using several other methods and the negative studies using unstimulated PBMCs, and populations that exclude neurological illness. I was appalled that science writers would copy the press release without reading the studies (which did not say they found a flaw in previous studies) and this seems to be a common practice. In fact one of these studies found the LNCap line to be free of contamination. Information patients quote was presented at 1st International Workshop on XMRV published at http://www.virology-education.com.
Science seems greatly influenced by social views about illnesses, and money available. Earlier viral leads were not followed up. There is still no RFA for XMRV in ME/CFS, and no money attached to the old CFS RFA. The “eventual” aspect of science doesn’t take responsibility for the 3 generations of people who are ill and probably contagious. If there is NIH funding more scientists will come forward and take the time to culture like the WPI did and work on etiology. NIH wants more confirmation, but won’t pay for it. Would they be doing anything if XMRV hadn’t been found in 7% of controls as well?
I very much agree with your assessment on funding. It’s a crime that ME is so underfunded.
The miniscule funding and the active thwarting and muddying of the science by CDC, NIH, UK govt, etc. are the main reasons ME has not been “solved”, not the failure to sub-type (although that contributes and also must be changed).
I think the weight of the evidence is that ME is in fact a discrete disease, as much as other discrete diseases that have subtypes, such as Hepatitis or Leukemia. It has a unique presentation that varies a little bit from host to host like in other diseases, but it’s still a disease with a coherent, discrete constellation of signs and symptoms. As, in MS, a specialist can diagnose with a good degree of accuracy by interview and physical exam, with further tests for specific markers including biomarkers making a very solid diagnosis (as in MS).
Great show! Thank you to David and Dr R!
– “The way patients with ME have been treated by the medical community is shameful.” –
Very true, 30 years of the most terrible shame.
However I have to disagree – science is not complicated, it is only as complicated as we make it. With ME the problem has and always has been that the criteria for diagnosis are so vague that possibly 90% of patients do NOT have ME is any cohort (Dr Leonard Jason.)
How can any scientist find the answer when for the most part they are not studying the disease. Only the most severely ill patients should be studied as those are the most accurately diagnosed. There are problems with all definitions of ME/CFS, but those severely affected are easy to see.
David Tuller talked about GRID and AIDS. HIV was discovered only by investigating severely ill patients that were often in the end stages of AIDS. Had scientists instead studied people that merely felt a bit tired along with GRID, HIV would never have been able to be associated with the illness.
Will science find the right answer? – not as long as scientists continue to make this matter complex. Not as long as psychiatrists and politics continue to be involved.
As an example of confused definitions – many people have been following Dr Deckoff Jones blog regarding her trial of anti-retrovirals. Yet I was shocked when I read the following –
“I could still exercise for the first ten years of my illness and my symptoms were primarily neurological and vascular.”
Whilst Dr Deckoff could have ME, the answer to this illness will never be found while such non-typical cases are used for research.
Until and only until severely affect ME patients that developed the condition following a glandular fever like illness, that exhibit terrible post exertional symptoms, and the classic constellation of neurological signs will the answers be found.
The problem is that such severely affected patients are often the least likely to be included in research – because they are too sick to be vocal. And that comes back to the shameful way they are being ignored.
Thanks so much for interviewing Tuller, Vincent. Also, I really appreciate your apology to us. That takes guts.
We really hope that you will interview Dr. Judy Mikovits. That would be wonderful.