Jones Articles

I don’t want to start a film review blog here, but I should, as a matter of public health and public education, mention a horrible little piece of poisonous propaganda called, Under Our Skin. It’s supposed to be a documentary about Lyme disease. Viewers won’t learn anything useful about the infection, but they will probably come away with a sense of having been punched in the face with a fistful of disinformation designed to confuse and infuriate. (Actually, this piece of disease porn reminds me of the 1980’s efforts of the KGB’s Department A (Dezinformatsiya) to blame the U.S. for the emerging AIDS epidemic. Stories were written about alleged U.S. experiments and then planted in Third-World newspapers by leftist reporters. The planted stories were picked up by other news organizations and quickly traveled around the world. It was a clever and effective propaganda campaign. Good thing the Internet wasn’t around in those days.)

I think I’ve seen most of the film in short clips and trailers posted on various websites. (I can only take it small doses anyway.) Copies of it circulate among Lyme disease activists and it seems to be playing in every church basement and library meeting room where such activists are able to gather. The film focuses on a number of people who are clearly ill; so much so that it’s hard to believe they only have Lyme disease. They are the “victims.” Also featured in the film are various private practice physicians—known as “Lyme Literate MDs” for their alleged knowledge of the infection, and their lack of formal training in infectious diseases or clinical research. They are the heroes.

And what’s a good tale without a villain or two? The villains are academic physicians, public health officials and insurance companies: a supposed cabal working to deny the existence of “chronic” Lyme disease and a national epidemic of Lyme disease.

(A quick note: most researchers and public health people I know tend to exaggerate the numbers, impact, costs, dangers, etc. of any disease they’re interested in. The bigger and badder the disease, the more money they can get for research. It’s rule #1 of any public health campaign or grant proposal. So I’ve never been able to figure out why Lyme activists think there’s a campaign to play down Lyme disease. From the point of view of professional self-interest, it doesn’t make any sense.)

The film has been around long enough that an occasional review has been published. In 2008, for example, Julian Upton, writing in Lancet Infectious Diseases, used words like “partisan,” “manipulative,” and “conspiracy” to describe it. Someone who knows something about making documentaries told me the film seemed to have been made “not to educate but to create and induce fear, panic and distrust.” If so, it succeeded. But I guess that’s the point of good propaganda.

Andy Wilson is the director and was inspired to make this film after his sister contracted Lyme disease. A few years ago, he responded to some criticism in an email: …we very much want to tell the truth about the Lyme disease controversy, and are looking for people…who have a breadth of experience and expertise to contribute to the dialogue.

…the so-called LLMDs have been much more eager to speak to us and, perhaps, this is the reason our research appears biased. Frankly, we've often heard from the "Lyme establishment" that if the opposing camp is equally represented, they do not want to participate. So you must understand our predicament: We are forced to represent one perspective over another.

“Tell the truth about the Lyme disease controversy.” Curious phrasing. I could understand wanting to tell about the Lyme disease controversy, but inserting the word “truth” suggests that something is wrong, something is hidden. Maybe there’s a conspiracy. It’s always tricky to go looking for “truth” because the quest often turns into a crusade. Moreover, how do you know the truth when you find it unless you already think you know what it is?

As for the LLMDs being eager to appear in the film, I’m sure that’s true. It’s free PR for them and an opportunity to attract more patients. It’s a chance to clean up an image that has been regularly tarnished by federal granting agencies, state and federal prosecutors, medical licensing boards, and malpractice lawyers. Who would want to share the limelight with such people? It would only boost their credibility….or reduce one’s own.

“We are forced to represent one perspective over another,” claims the director. So whoever shows up, that becomes the chosen perspective? That becomes the “truth”? Again, I don’t know anything about film and documentaries, but that attitude isn’t likely to produce anything more honest or useful than a heavy-handed commercial. Aren’t there any disinterested experts or science writers to interview? Any infectious disease researchers who don’t see patients, but who might have insights into the epidemiology and pathogenesis of Lyme disease? Apparently, not.

Wilson wrote in an email, We are not interested in agitprop journalism. (Agitprop, by the way, is from the Russian, Agitatsiónno-propagandístskiĭ otdél, or Agitation Propaganda Section of the Central Committee.) Yet Wilson and his producer Kris Newby (herself a self-described “Lyme victim”) certainly sound like they’re out to agitate and propagandize.

A few years ago, a reporter I know wrote, …that documentary filmmaker andy wilson (under our skin, the lyme=aids movie) wants to do a segment on the [news] story, and has one of his producers investigating me by calling colleagues of mine to see if i have "ties to the health insurance industry". it's sort of sad but also creepy.

Similarly, a researcher at Johns Hopkins wrote to a colleague about the same producer, noting, Open Eye Productions contacted Hopkins about your stated affiliation with Hopkins. Another Newby query asked of a reporter, Just out of curiosity, did you get your original source material for your Lyme article from ____? If you did, you really should talk to me.

Newby also wrote in an email, I'm a science writer who's been doing the investigative work for an upcoming Lyme disease documentary…. I have a lot of dirt on the IDSA guidelines authors, if you're interested. I'd love to include it all in our film….” “…I'll give you the 30 minute overview of the greed, politics, etc, with Lyme. I've been working on this for 2 years, and I'd hate for all that research to go to waste.

It’s clear from the film clips that it did not go to waste.

If the creators of Under Our Skin were interested in dirt, greed and politics they need not have looked any farther than a mirror or the company they keep.

Dirt, greed and politics can be found among the advocacy groups and LLMDs who supported this film and advertise its merits on their websites. It can be found among the LLMDs who sit on Lyme advisory boards and troll for patients at advocacy meetings. It can be found among the LLMDs who pump their patients full of i.v. antibiotics and supplements, but are mum about their ties to intravenous infusion and nutritional supplement companies. It can be found among the Lyme advocates and LLMDs who direct confused patients to one or two diagnostic labs specializing in Lyme tests. It can be found among the owners of specialty Lyme labs who sit on Lyme advocacy boards and regularly attend Lyme gatherings to hawk their products. It can be found among the activists who set up defense funds and organize rallies to protect LLMDs from licensing boards, malpractice attorneys and injured patients. It can be found among the activists who write death threats and make anonymous calls to the directors and deans of their imagined enemies. It can be found among the cash-only, bootstrapping LLMDs who justify their clinical practices by citing the clinical guidelines they wrote, and then justifying the guidelines by citing the anecdotal practices that inspired the guidelines.

Sometimes I think this sci-fi movie was commissioned by the activists and their LLMDs as yet another vehicle for making money and spreading hysteria about a common bacterial infection.

As an example, here are a couple of online posts from film’s producer, Kris Newby: Can we please ask you [the activists] to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? And again, Letters to both local and national PBS office would definitely help get UNDER OUR SKIN on the air, so go for it.

Yeah, maybe they can sell a few more DVDs.

Under Our Skin is such an assault on evidence-based medicine it should be classified as a snuff film. Rational and the well-informed viewers are not likely to be deceived by this blatant propaganda piece, but I was surprised to find a number of online Lyme patients who didn’t think much of it either.

One regular poster to a Lyme disease forum wrote, I came away with the impression that Shapiro and Wormser [two infectious disease specialists] were really just used to make, setup, the opposing point. The IDSA starring as the bad guys. Looking at the trailer...there is a statement that Shapiro makes about the "bottom line" that appears to be out-of-context in the film...making it appear as though he is saying something else, entirely.

Another online regular wrote a detailed critique of the pseudo-documentary.

Unfortunately, Under Our Skin falls terribly short in executing its goal in informing the public fully….

The producers’ choices in the doctors they follow does not help the “Lyme-literate” cause. While the inclusion of the Jemsek and Jones hearings was a necessary move, the choice to include Dr. Klinghardt, who openly advertises the use of hormones and bee venom to treat Lyme disease as a top physician in the field is, in my humble opinion, a questionable choice. It is also unfortunate that the filmmakers choose to approach the Jemsek and Jones trials in such a way as to overshadow the numerous mis-diagnoses made by Jemsek, for example. The actual reason why Jemsek had his license suspended in North Carolina is all but ignored, the producers instead focusing on political implications. Similarly, the focus of Jones’ trial is not that he treated patients he had never met, let alone examined, as well as other charges listed on the official order, only that he has helped thousands of patients and therefore deserves some type of immunity for his actions….

I feel that Mandy’s story [a woman portrayed in the film] only ends up making Lyme patients appear to be the malingerers and hysterics that far too many doctors already are too quick to brand us, and I fear that, as genuinely sick as Mandy may have been, the footage of her only renders illegitimate all that could have been redeeming aspects to the film.

On the other hand, Charles Ray Jones, a well-known LLMD in Connecticut and one of the stars of the film, claimed in a letter to his defense fund donors, Validation of my practice has been supported by Andy Wilson in his highly acclaimed documentary film, “Under Our Skin".... Right. Some guy with a video camera thinks you’re Albert Schweitzer while a committee of your physician peers thinks you need to be watched at all times.

I guess it’s true, you can’t convince the committed. Or as someone so elegantly put it, “believers simply look for more excuses, even resorting to a ‘your science is inadequate to test my magic’ argument.”

So there we are with the Lyme controversy. Fact vs. film. Science vs. magic. And if the politicians get any more involved, magic is likely to win….in the short-term….just ask the Pope.

-

Posted by Relative Risk at 17:36 1 comments Links to this post

Labels: Film, Jones, Lyme disease

14 April 2009

Dr. Jones Speaks

I’ve been reading through last fall’s transcripts from the medical board’s investigation ofCharles Jones, Connecticut Lyme Doc to the foolish, the gullible, and the desperate. It’s hard to understand why this elderly man is still in active practice and why people would bring their children to him. Reading through the proceedings, I’m left with the impression of a man who doesn’t seem to know much about medicine in general or infectious diseases in particular. At times, Jones seems baffled by the investigation and the examiners’ questions. He gives the impression of having a hearing problem and of being confused—sometimes about his own notes and professional background. Sometimes I feel sorry for the old man that emerges from the pages of this inquiry. One of his most frequent answers to a question is, “I’m sorry?” He says that 33 times through 276 pages of testimony.

STATE OF CONNECTICUT

DEPARTMENT OF PUBLIC HEALTH

PETITION NOS. 2006-0111-001-010

RE: CHARLES JONES, M.D.

2006-0411-001-069

2006-0407-001-068

SEPTEMBER 12, 2008

CONNECTICUT MEDICAL EXAMINING BOARD

BEFORE: RICHARD BRIDBURG, M.D., CHAIRPERSON

ANNE C. DOREMUS, PUBLIC MEMBER

EDWARD OSSWALT, PUBLIC MEMBER

FOR THE BOARD: TANYA DeMATTIA, ASSISTANT ATTORNEY GENERAL

Here he is introducing himself and outlining his professional background.

My name is Charles R. Jones, M.D. I’m a physician not in Hamden but in New Haven as the Statement of Charges reflect me as being in Hamden. I’m in New Haven. I practice pediatric adolescent medicine, but they -- most of the children I see and adolescents I see having Lyme as well as other tick-borne diseases.

Q Dr. Jones, can you hear me satisfactorily? Doc, can you hear me satisfactorily?

A I’m sorry?

Q Can you hear me?

A Yes.

Q Good. Can you tell the Panel something about your educational background, please?

A Yes, I was -- graduated from New York Medical College in 2000 -- in 2000 -- in 1962. I was resident -- well, first of all, I served as intern in pediatrics at St. Luke’s Hospital in New York City for one year and then residency in pediatrics and adolescent medicine at St. Luke’s and at Memorial Sloane Kettering. The --

Q Any further training, sir, fellowships or anything of that sort?

A Fellowships, yeah, as a rheumatoid arthritis fellow when I was a medical student which enabled me to do -- do basic science research as well as clinical research while I was in -- while I was a medical student, excuse me, while I was a medical student and at the same time while I was an intern and resident at St. Luke’s Hospital. And I was also -- while I was a medical student at New York Medical College, I was an Assistant in the Department of Biochemistry all through the time I was a medical student and did research and some teaching. That was essential because my wife and I weren’t totally independent and I had to have as much income -- we had to have as much income as possible. And she taught and I went to medical school and did research as well as taught.

Q When did you enter clinical practice, doctor?

A I’m sorry?

Q When did you enter clinical practice?

A If I remember -- 1965.

Q And where?

A In New York City, 111, not 111 in --

CHAIRPERSON BRIDBURG: Excuse me. I’m a little confused. Didn’t he say --

A -- in Madison -- just off Madison Avenue. That’s off -- that’s on the east side.

MR. POLLACK: One second, I’m sorry.

CHAIRPERSON BRIDBURG: I thought he said he graduated 1962, is that right?

MR. POLLACK: Correct.

Q But when did you enter clinical practice, do you --

A I haven’t figured that one out. I would have -- ’66 or ’67.

Q And what was your practice initially?

A The practice initially was -- consisted of pediatric adolescent medicine and pediatric oncology.

Q And how long did you practice in those areas?

A In -- until 1969 we moved from New York City to Hamden, Connecticut to -- it was very difficult practicing in New York City. We started having a family. It was difficult raising children in New York City so we decided to move to New Haven, Connecticut, the New Haven area. It was in Hamden. And have a regular pediatric practice and not do cancer and leukemia any longer.

Q When did you begin to focus on tick-born[e], diagnosing and treating tick-born diseases and Lyme disease doctor?

A To focus on?

Q Yes.

A Not just begin seeing it? Begin seeing it?

Q Begin and then focus.

A Okay. Shortly after arriving in New Haven or in Hamden, I started, I’d say in the late sixties and early seventies, started seeing children come into the practice who had -- they were coming in clusters. They had a juvenile rheumatoid arthritis-like picture.

And juvenile rheumatoid arthritis is not supposed to cluster and these children came in in clusters, three or four in the same community, also some from the same family. Some of them -- I wasn’t the only one seeing this. I mean other people in the area were too.

This was at the beginning of the Lyme awareness, where some of the children came in with strep infections and they were put on antibiotics and got better pretty rapidly. And we started treating all the people with the juvenile rheumatoid arthritis-like picture with antibiotics.

snip

Q Going back to the question I asked a moment ago, can you tell the Panel of just the one or two, perhaps, distinctions or awards or honors you’ve received in connection with your pediatric Lyme practice, Dr. Jones?

A Well, one was an award given through a group in California. We’ve got a new group in California but it’s a Lyme organization that publishes Lyme Time. And that was concerned with my being the outstanding physician in Lyme disease and especially -- with reference to pediatric and adolescent medicine in 2000.

I’ve received many awards over the years in the form of plaques denoting outstanding achievement in treating children with Lyme disease from various organizations.

Q Doctor, any connection with Columbia University Medical School?

A Well, that’s a different issue. Not a different issue, it’s one -- it’s a related issue. At Columbia University in the medical school, there’s a -- there’s a fellowship in my name, the Charles Ray Jones Endowment -- endowed fellowship that enables students who completed the first year of medical school -- medical school schooling, to be able to apply for a fellowship in my name. It’s in my name, Charles Ray Jones Endowed Fellowship involving with learning more about the treating of tick-born disease -- diseases.

Q And what’s the nature of that fellowship, please?

A The fellowship enables the recipients to be able to go to offices of physicians who practice and treat Lyme and tick-born diseases or to be with basic science researchers at Columbia or elsewhere to learn more about tick-born diseases. It’s a -- it’s a -- it’s sort of thrilling to have the students come in who are fresh and are not -- who just completed their first year of medical -- medical school and who are interested very much in learning more about clinical medicine. They’ll come in and stay for a week or a month or two months and do a program of -- of awareness. And when they are -- and the people who come to my office, I’ve had about eight or nine -- eight or nine over the years, the people who come to my office have -- I’ve enabled them to participate in the -- in the questioning and also the evaluation of the children who have Lyme disease. It’s a hands-on experience.

A lot of the people who do it have decided that they want to go into a field of medicine that -- that treats infectious diseases, and not just Lyme, but infectious diseases.

Q So these students actually come from the medical school to your office, is that so?

A Yes.

Q And does the medical school send them to you and select them?

A There -- there’s a rather rigorous selection process that Dr. Brian Fallon is involved in where students can apply and then go through a rather -- rather horrendous application and interview situation. But then they are selected or rejected. I don’t know how many are rejected, but a good many are. I think they select two to four a year now. It used to be one. The endowment -- I don’t know what the endowed monies consist of now, but.

Q One last question, when was that fellowship program inaugurated, doctor, if you can recall?

A Maybe -- maybe ’98.

Except as a bad example or a “what not to do,” what could this guy possibly teach new medical students?! I’d love to know what these med students thought of their experiences with Jones. Someone should track them down and find out.

Posted by Relative Risk at 17:16 0 comments Links to this post

Labels: ILADS, Jones, Lyme disease