Paul G. Auwaerter, MD
March 01, 2016 – Medscape Family Medicine
Hello. This is Paul Auwaerter with Medscape Infectious Diseases, from the Division of Infectious Diseases at Johns Hopkins. Tickborne infections continue to surprise us. Lyme disease historically has been the top vector-borne illness in North America, with 20,000-36,000 reported cases annually, although estimates suggest that the actual number of cases occurring in the United States annually might be upwards of 300,000.
Other members of the Borrelia genus cause disease in the United States. Perhaps the oldest, known for many decades, have been the agents of relapsing fever—either louse-borne (which is fairly rare in this country) or, more commonly, tickborne. Tickborne relapsing fever is spread by soft ticks that like to bite at night, especially campers in sleeping bags, and often in elevated climates of 2000-7000 feet above sea level in the western United States.
But two more recent borrelial species deserve some attention for anyone who treats patients who might have acquired a tickborne infection. The first is B miyamotoi. This was first described in Russia a few years ago and was initially thought to cause a relapsing fever-like illness, but in the United States it was first described as causing a meningoencephalitis. B miyamotoi seems to be transmitted by the same deer tick that transmits Lyme disease, and commercial assays for testing for it aren't yet widely available. However, this infection can be severe enough to cause hospitalization with a sepsis-like presentation. More commonly, it is associated with a febrile illness and can be confused with atypical Lyme disease (without a rash), ehrlichiosis, or anaplasmosis.
However, the newest kid on the block was just described by groups at the Mayo Clinic and the Centers for Disease Control and Prevention. The Mayo Clinic has been a reference lab for many tests throughout the United States. They have drawn samples from around the country and found six samples using polymerase chain reaction (PCR) testing for suspected Lyme disease that had atypical melting curves. Upon further genetic analysis, they found that this was a new species, which they have given the candidate name of B mayonii in recognition of where the work was done.
Of interest, the six patients were all from the upper Midwest—Minnesota or Wisconsin. All were ill with fever and rash. One was described as having an erythema migrans rash, others had diffuse maculopapular rashes. There is a suggestion of neurologic syndromes. One patient had arthritis and two others were ill enough to be admitted to the hospital.
Somewhat different from Lyme disease, however, is that some of these patients had very high spirochete loads in their blood. This skews more to what you might find in traditional relapsing fever.
Now, what does this mean? The authors suggest that this is a newly emerging borrelial infection because it hadn't been described in more than 90,000 samples from different regions that they had analyzed earlier, so they think it could just be found in the upper Midwest. Obviously, however, this is very much in the earliest stages.
This situation seems very similar to that in Europe, where B burgdorferi sensu stricto (what we have had here in the United States) accounts only for a small proportion of Lyme borreliosis. B garinii and B afzelii account for far more cases. Several borrelial species account for infections there. We are no longer limited to only one now that B mayonii is a separate entity.
There are no specific diagnostic tests yet. It is uncertain whether a B burgdorferi PCR would pick this up routinely. The Lyme C6 antibody, which is US Food and Drug Administration approved, at least detected the infection in all four patients. Less successful was the traditional two-tier immunoblot testing, although the IgM Western blot was positive in three out of three people tested. The IgG assay was far less successful.
Whether these patients need different treatment is unclear. They were treated the way that we would treat any tickborne infection. That is the right response at the current time.
Stay tuned, because we might uncover more tickborne infections with advanced molecular technologies. Clinicians should pay attention to what they think might be Lyme disease, ehrlichiosis, or anaplasmosis, which may indeed represent some of these alternative infections
From: Wall St JournalPatients, Scientists Fight Over Research-Data AccessSome scientists balk at disclosing details in study of chronic fatigue syndromeAmy Dockser Marcus
March 7, 2016 6:51 p.m. ET
A controversy surrounding a study of chronic fatigue syndrome is prompting some scientists to push back against demands that they make medical research data more widely available to other researchers and patients.
Data from clinical trials and other studies are increasingly open to public scrutiny. Proponents of open access say it can aid other scientists seeking to check research conclusions, and patient groups say it can help determine how useful potential new treatment options may be. The National Institutes of Health requires researchers it funds to make data available to other scientists and the public. And some medical journals have begun making open release of data a condition for publication.
But some scientists are concerned that research data in the wrong hands may be misused or misinterpreted. They also fear they may face harassment from other scientists or patients who disagree with the findings.
The debate recently boiled over regarding the long-running study in the United Kingdom of ME/CFS, a debilitating and poorly understood condition also known as myalgic encephalomyelitis or chronic fatigue syndrome. The study found that either a program of gradually increasing exercise, or cognitive behavioral therapy, led to modest improvements in patients’ fatigue and physical functioning compared with standard medical treatment, which consists mainly of educating patients about the condition and treating symptoms such as pain. The study, which is commonly known as Pace and involved 640 chronic fatigue patients, was first published in the journal the Lancet in 2011.
Some patients and other scientists have doubted the study’s conclusions. “These theories presume and insist that patients are not medically sick but simply suffering from dysfunctional cognitions that need to be changed,” said David Tuller, a lecturer in public health and journalism at the University of California, Berkeley. Dr. Tuller wrote an extensive analysis describing methodological problems with the Pace study that ran in October in “Virology Blog,” a widely read scientific blog.
On Monday, 43 scientists and clinicians sent a letter to the Lancet asking it to seek an independent reanalysis of the Pace study data. A petition disputing the trial results, and signed by 11,000 patients, caregivers and doctors, was submitted to the university, medical journals and posted online last week asking the researchers to release the data. And in October, the Information Commissioner’s Office, a U.K. independent authority that rules on public access to information, said Queen Mary University of London, which ran the Pace trial, must turn over research data to a patient who requested it; an appeal by the university will be heard next month.
Controversy has long surrounded ME/CFS, including how to define it and treat it. The National Institutes of Health in October said it was going to strengthen efforts to study the condition and find better prevention and treatment approaches. The Institute of Medicine found in a 2015 report about ME/CFS that exertion can make patients’ symptoms worse.
Queen Mary University declined to make the Pace investigators available for an interview. In a statement it said: “We have supplied requested, anonymized data to independent scientists, as part of the normal research collaboration.” It added it is also concerned for “the rights and welfare of trial participants.” The university said it is seeking further ethical, scientific, and patient advice on the matter.
Richard Horton, editor in chief of the Lancet, said he generally supports making data available to other scientists and patients. But, he said, “When you see some things written on social media [about the ME/CFS trial and the investigators], it makes you anxious that the claims for rational scientific debate based on access to the data may not be fully delivered.” Dr. Horton says the Lancet stands by the trial findings.
James Coyne, a professor of psychology at the University of Pennsylvania School of Medicine, in December asked another journal, PLOS One, which published a follow-up paper based on the Pace trial, to get the researchers to turn over their data. Among his concerns, Dr. Coyne said the researchers changed their outcome measures after the trial began and he wants to see if patients would have shown improvement under the original criteria. A spokesman for PLOS said the journal has contacted the study authors.
Tom Kindlon, 42 years old, of Dublin, and assistant chairman of the Irish ME/CFS Association, says he agrees patient confidentiality must be protected but that the research data he and others want access to “is not the sort of information that would identify people.” A concern he has is that patients in the trial might have reported feeling better, but that objective measurements of their performance, especially how far they could walk in six minutes, may not have shown actual improvement.
Anna Sheridan Wood, 40, a patient from Glasgow, also filed a request for data on the six-minute walking tests, but says the university turned her down. She has filed an appeal. She feels some scientists believe patients cannot be objective when assessing data because of their personal stake in the matter. But she will look at the data with “an open mind, as a scientist,” says Dr. Sheridan, who has a Ph.D. in physics.
Patients who request data aren’t subject to the same rules or controls that professional scientists are, says Stephan Lewandowsky, a cognitive scientist at the University of Bristol, in England, who co-authored a commentary in the journal Nature earlier this year arguing that open access to research data can be abused. Under certain conditions, “you have to say no,” he says. Dr. Lewandowsky has proposed creating an independent body that can weigh in on data requests either from scientists or members of the public “when things are contested.”
Dr. Jonas Blomberg Meets with Carol Head, Zaher Nahle
On Feb. 25, 2016 Solve ME/CFS Initiative President Carol Head and Dr. Zaher Nahle, Vice President for Research and Scientific Programs, met with Dr. Jonas Blomberg, a leading Swedish virologist, at the Solve ME/CFS Initiative offices in Los Angeles. Patient advocate Etel Barbork also visited the offices. During the meeting, a wide range of topics related to ME/CFS research and policy were discussed, including the status of ME/CFS research in Sweden and the rest of Europe.
The group also discussed potential collaborations between the Solve ME/CFS Initiative and Dr. Blomberg’s research group. Dr. Blomberg is leading an effort with a team of Swedish investigators, including: Dr. Carl-Gerhard Gottries, Dr. Per Julin, Dr. Anders Rosén and Dr. Jonas Bergquist, who are collaborating to investigate aspects of ME/CFS using new methodologies.
Open Medicine Foundation welcomes Dr. David S. Bell, newest Scientific Advisory Board member We are pleased to announce David S. Bell, MD, a widely respected medical doctor with extensive ME/CFS experience, has joined our ME/CFS Scientific Advisory Board.
"I am thrilled to become part of Open Medicine Foundation for several reasons," said Dr. Bell. "First and foremost is that in the many years I have been studying the illness there has not been the comittment to it by the state of the art science, and that has been mainly because of scientific apathy and/or lack of funds. But the Open Medicine Foundation is starting with the understanding that ME/CFS is not going to reveal its mysteries without real science. It is my hope that I can add to the overall effort with my clinical perspective."
We invite you to see what distinctive benefits Dr. Bell will bring as we move closer to Ending ME/CFS and listen to his latest public discourse on the disease. See more about Dr. Bell.
WELCOME DR. BELL!
Linda Tannenbaum, Executive Director
Open Medicine Foundation