Protesting CDC’s biased reporting in PubMed Commons
The CDC’s June 15 article in MMWR, which slams “chronic Lyme” treatments—and by extension, Lyme patients and the doctors who treat them—continues to draw sharp responses from the Lyme disease community.
ILADS physician Raphael Stricker, MD, and his frequent co-author, LymeDisease.org CEO Lorraine Johnson, posted their rebuttal on PubMed Commons on June 17. Now, when anyone accesses the original article on PubMed, Stricker and Johnson’s reply will be shown right along with it.
The authors point out flaws in how CDC employee Christina Nelson conducted the study described in the MMWR article, and assert that her “biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.”
Here is the full text of their letter:
The article by Marzec et al. published in MMWR purports to show the dangers of treatment in patients diagnosed with chronic Lyme disease (1). Recent reports from the Centers for Disease Control and Prevention (CDC) indicate that more than 300,000 new cases of Lyme disease are diagnosed each year in the USA (2). The MMWR article from the CDC describes five anecdotal cases of treatment complications in these patients while ignoring the significant morbidity related to denial of treatment for chronic Lyme disease (2,3). The resultant biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.
The MMWR piece resulted from anecdotal reports gathered by Dr. Christina Nelson of the CDC. The article notes that the information was gathered because “clinicians and state health departments periodically contact CDC concerning patients who have acquired serious bacterial infections during treatments for chronic Lyme disease.” However, an ethics complaint filed against Dr. Nelson by the Lyme disease patient advocacy group LymeDisease.org suggests that these adverse event reports were in fact specifically solicited by Dr. Nelson via emails distributed in 2014 (4). Dr. Nelson asked clinicians from the Infectious Diseases Society of America (IDSA) to provide anecdotal evidence of harm to patients from intravenous antibiotic therapy related to Lyme disease, and she apparently offered coauthorship of her article as an incentive to describe these adverse events. She did not ask for consequences of failing to treat these patients, nor did she solicit commentary from practitioners who treat chronic Lyme disease according to the guidelines of the International Lyme and Associated Diseases Society (ILADS).
The risk of any medical treatment is extremely context-sensitive. A crucial question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient. By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue in a manner that excludes the other half of the equation in a risk/benefit assessment. She is also ignoring an issue that is critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating (5,6). Moreover, by failing to mention that these adverse event reports were rare and specifically solicited, she implies that these rare occurrences are a common concern. In reality, studies of the risks and benefits associated with intravenous antibiotic treatment for Lyme disease indicate that the risks of adverse events are no greater than the risks of intravenous therapy in other unrelated diseases (7,8).
By asking the question only of those on one side of the controversy, Dr. Nelson is further demonstrating favoritism and a lack of impartiality on the part of the CDC. Accordingly, Dr. Nelson’s solicitation of anecdotal adverse events for case studies of Lyme disease is a highly inappropriate partisan act of favoritism toward the IDSA viewpoint at the expense of critical stakeholders – Lyme disease patients and their treating physicians – and an attack on the ILADS viewpoints.
(Click here to read the above-referenced footnotes.)
A second PubMed Commons response to the article was posted by Dr. Sing Hang Lee, Director of Milford Molecular Diagnostics Laboratory, which specializes in developing DNA sequencing-based diagnostic tests.
He states:
Marzec and colleagues presented five “chronic Lyme disease” patients who did not benefit from additional antibiotic treatment when the diagnoses of “chronic Lyme disease” were made on the basis of clinical symptoms and signs (www.cdc.gov/lyme/diagnosistesting/) or by unvalidated tests. The authors have not presented evidence to show that chronic Lyme disease patients with borrelial spirochetemia proven by culture or by gene sequencing do not benefit from additional antibiotic treatment. In medicine, certain chronic infections, such as subacute bacterial endocarditis, may require intravenous or prolonged antibiotic treatment [1] in spite of its potential side effects.
(Click here to read his entire entry.)
Other responses to MMWR article:
Dorothy Leland, LymeDisease.org: CDC ignores ethics, attacks “chronic Lyme”
Pat Smith, Lyme Disease Association: Who Controls Fake Lyme Disease News?
David Michael Conner, Huffington Post: An Open Letter to Editors of The Washington Post About Journalistic Ethics & Integrity
As someone who suffers from a chronic tick-borne illness(Bartonella) I pray the CDC will focus more on those of us who suffer despite treatment and focus less on the politics of chronic Lyme. when I was first diagnosed with Bartonella, I was part of a study group as at that time there was no test for Bartonella in humans, only dogs. I was diagnosed with Bartonella Kholarea only to be told at an IME for disability insurance that this strain of Bartone;lla does not cause disease in people.(see NIH article from 2004). Why the politics and fighting between specialities I do not understand. PEOPLE SUFFER from this lunacy.
Well done Ms. Johnson and Dr. Stricker – this rebuttal is critical so there is a balanced perspective for general public and medical professionals. The CDC is so blatantly biased against Lyme – to list state risk of infection for IV treatments? Why don’t they state the risk of infection for cancer patients going through chemo? Would one refute a cancer patient treatment for the risk of the picc line? I am shocked Dr. Nelson would author such a paper which has no regard for “The Scientific Method”. Clearly, Dr. Nelson is an example that you don’t have to have an IQ to get through medical school and work for the CDC. The CDC and Dr. Nelson must think the Lyme community and public are complete idiots.
Thank you for your speedy response and making this a public statement for all to read, and grateful for your support of the people suffering with Lyme, like my son who’s life has been derailed by a pediatrician 10 years ago that followed the CDC guidelines to diagnosis and disregarded clear clinical symptoms.
I am working hard to sue the CDC and the IDSA – working very hard.
IN MY OPINION – Thank you Carla. I was just visiting with family in Virginia this past week. It was mentioned that a young lady was being cheered on for wanting to work for the CDC someday when she graduates. I let them know of the corruption that exists in our Infectious diseases department of the CDC. I can not believe those in the CDC and IDSA, such so called intelligent persons can be so Ignorant and shamefully arrogant without some kind of Payoff or control environment. Ms. Christina Nelson will one day sit in her big house and look out the window as many at the CDC will do. They will know that where they are going will not have fire extinguishers or friends. I for one can not say “God help them”.
Now for the Unfairness of the Publication against the Long term treatment and Late stage Lyme issue. My wife and I have both been through the terrible devastation of Late stage (Chronic Lyme) Lyme. I almost lost her because she was not responding to the treatments. She was in the care of a very good LLMD, Not the ignorant bred arrogance of the CDC and Lyme corp driven Medical community of our Non lyme literate mainstream medical community. If it hadn’t been for the Immunoglobulin Transfusions she received for a year. She would have died. She is with me and does some better now with some lingering results that I am sure would have been much less without the ignorance of the Non Lyme Literate community. I suggest that we start investigating the bank accounts of the CDC and heads of the IDSA. Get some idea of the Pharma or compromising companies that are involved in this dreadful humiliation on the planet. – IN MY OPINION
How on earth does an individual fight this? This has to change – does anyone know a lawyer willing to take these idiots on? Seems like that the only way things change sometimes in this country.
Maybe if Dr. Nelson had chonic Lyme disease he would change his tune. I don’t understand the politics involved. People are ill.
I wonder what Dr. Nelson would do and say if someone she loved was suffering. Why does this remind me of of the faith-healing parents that were convicted of 1st degree murder in the death of their diabetic son? Is Dr. Nelson a faith-healer? Because she is denying us medical care. The CDC is committing mass murder with their utter disregard of this disease.
Someone has got to stop the CDC from this obscene and criminal incompetence with lyme. It makes me wonder if anything coming out of that place can be trusted. Once you lose public trust, it is not easy to regain it. You might say that it is not fair to condemn all of the CDC employees because of a few bad apples, but those apples have not been picked and discarded by any director or head of the agency. They are therefore complicit.
Science may be self correcting but it can take so long that many die while waiting for a correction. And what is being done in a government health agency may not be science at all. When thousands of voices of patients heard over decades are ignored and those patients punished for no reason other than they are sick, something is seriously wrong.
Just repeating as so many of us suffer, suffer, suffer, suffer, and DIE!!!!!!!! CRIMINAL HHS, CDC, FDA, IDSA, and so on. CRIMINAL drug, insurance, government complex. I no longer blame the doctors so much. they are trained agents. It takes thinking doctors to perceive what is going on. Our doctors who do figure it out are punished. UNACCEPTABLE. What did we expect out of the government-industrial medical complex. We have to keep fighting the madness for ourselves and for future generations.
Thank you Ms. Johnson and Dr. Stricke. To you and all of us, keep up the fight.