Background
“Chronic Lyme disease” is a pseudoscientific health scam that evolved into a destructive yet influential cult.
CLD started in the United States in the late 1980s and grew to ~120 Lyme “support” groups throughout North America by 1992. Propelled by the internet and the formation of the dangerous anti-science group ILADS in 1999, it spread all over the world, even to Australia where real Lyme disease is not endemic but thousands have been fraudulently diagnosed.
As an anti-science movement, CLD uses typical tactics of science denial, including fake experts, logical fallacies, impossible expectations, cherry picking, and conspiracy theories. Other deceptive tactics include undermining the scientific consensus and confusing issues by mixing truth with lies so it’s difficult to tell the difference.
Anti-science politicians endanger public health
We have seen over and over again how science-denying politicians contradict experts and place the public in danger. In the US, actions by Senator Richard Blumenthal and Congressman Chris Smith were particularly egregious. Some states even have laws that attempt to legalize healthcare fraud.
In 2018, the European Parliament issued a misinformation-filled resolution that promoted discredited DualDur testing and ILADS quackery while ignoring the scientific consensus about Lyme diagnosis and treatment.
Below are responses from two group of experts:
European Society of Clinical Microbiology and Infectious Diseases
The ESCMID Study Group for Lyme Borreliosis (ESGBOR) issued the following statement:
ESGBOR welcomes the call of the EU parliament for additional epidemiological surveillance, funding and research for this tick-borne infection, and improvement of patient diagnosis and diagnostic testing.
Unfortunately, the resolution is based on exaggerated rumours such as “silent epidemic” spread by ticks, that remains underdiagnosed and affects around one million Europeans.
ESGBOR would welcome support from the EU parliament addressing the issue of false rumours about Lyme borreliosis. It is also time to combat the provision of non-validated diagnostics testing, deceptive Lyme borreliosis diagnosis and inappropriate treatment. Causing unnecessary concern about a disease may also cause harm and is an important public health problem.
Writing in the Finnish Medical Journal and Patient’s Medical Journal, other experts denounced the EU resolution. A translation is below:
EU resolution confuses the treatment of Lyme borreliosis
14 December 2018
The European Parliament has taken a position on the diagnosis and treatment of Lyme borreliosis without consulting infectious disease physicians. The resolution is unscientific in many respects and could lead to wrong and even dangerous approaches to patient care.
- by Jarmo Oksi, Jukka Hytönen, Asko Järvinen, Mari Kanerva, Marika Nordberg, Dag Nyman, Matti Viljanen, and Peter Wahlberg
In its resolution on the diagnosis and treatment of Lyme borreliosis, adopted on 15 November, the European Parliament surprisingly states that there is no consensus in Europe on the subject. In reality, there is an evidence-based European Academy of Neurology (EFNS) recommendation for treating physicians, which covers, among other things, diagnostic criteria and treatment of neuroborreliosis.
The Parliament also suggests in the resolution that infection can lead to damage comparable to chronic disease. In our clinical experience, chronic disease is now very rare because infections are treated effectively from the outset. There is also no scientifically accepted evidence of chronic Lyme disease following antibiotic treatment.
Lyme borreliosis is the most common infection in Europe transmitted to humans by animals, in this case ticks. There are between 650 000 and 850 000 cases each year.
According to the Parliament, under-diagnosis is due not only to a lack of awareness of the symptoms but also to the lack of proper diagnostic tests.
As a problem with the current ELISA antibody test, Parliament states that it produces a result for only one pathogen (Lyme disease). This is precisely how antibody tests are used: to test a blood sample for possible antibodies against a suspected pathogen.
The resolution also wrongly claims that doctors often follow outdated recommendations.
The comparison of treatment recommendations compares two very different organisations: the International Lyme and Associated Diseases Society (ILADS) and the Infectious Diseases Society of America (IDSA). ILADS is an American organisation whose membership list is difficult to obtain and is unlikely to include many infectious disease physicians. IDSA, on the other hand, is an international association of infectious disease physicians with tens of thousands of members.
There are multiple entrepreneurs in the treatment of Lyme disease
Parliament wants the Commission to make recommendations and the Member States to extend clinical research so that patients do not face a therapeutic deadlock and have to seek help even abroad to get a diagnosis and treatment for their illness. The aim should be to diagnose Lyme disease even when antibody tests are negative.
However, the centres receiving foreign patients mentioned in the resolution do not use methods of diagnosis and treatment that are considered appropriate by the scientific community. Parliament takes no position on this. It is well known that the antibody tests in use become positive at the latest after two months of infection, and in most cases sooner.
The resolution refers to the diagnostics project (DualDur EU, 2018-2020), which received €3.5 million in EU funding. The developer of the patented DualDur test is a Hungarian doctor who has not published a single peer-reviewed article on Lyme disease in international medical journals. The test, based on microscopy of a blood sample, has recently been the subject of a blinded study, which found it inadequate for the diagnosis of Lyme disease.
In the resolution, Parliament calls for financial support for projects investigating the early diagnosis and treatment of Lyme borreliosis and the epidemiology and pathogenesis of the disease. The statement calls for the disease to be a notifiable communicable disease in the Member States.
The unscientific approach was also criticised in Sweden
Lyme borreliosis is a serious infectious disease, and more funding should be made available for high-quality research. In this respect, the resolution is welcome.
However, in many respects it is unscientific and can lead to wrong and even dangerous patient treatment strategies. Parliament should have consulted infectious disease doctors and other medical experts from across Europe before publishing the opinion. The scientific validity of some of the points made should have been checked. In Sweden, experts have already criticised the unscientific nature of the conclusion.
In the Nordic countries, and elsewhere in Europe, there is a very consistent public health approach to the diagnosis and treatment of Lyme borreliosis. Suspected cases of long-term Lyme disease are investigated at a centre in Uppsala. Over the past two years, the centre has examined around 250 patients, of whom less than ten have been diagnosed with Lyme disease requiring treatment.
Authors
JARMO OKSI
Chief Physician of the Infectious Diseases Unit, Specialist in Internal Medicine and Infectious Diseases, Turku University Hospital (TYKS)
Professor of Infectious Diseases, University of Turku
JUKKA HYTÖNEN
Associate Professor of Bacteriology, University of Turku, Finland
Specialist in Clinical Microbiology, TYKS
ASKO JÄRVINEN
Senior Physician, Associate Professor, Specialist in Internal Medicine and Infectious Diseases
HUS Inflammation Centre, Infectious Diseases
MARI KANERVA
MD, Associate Professor, Specialist in Internal Medicine and Infectious Diseases
HUS Inflammation Centre, Infectious Diseases
MARIKA NORDBERG
LT, Specialist in Infectious Diseases, Infectious Diseases Specialist, Åland Hospital Association
DAG NYMAN
Professor, LT, Specialist in Internal Medicine
Former Chief Medical Officer, Central Ålandic Hospital
MATTI VILJANEN
Professor Emeritus of Bacteriology, University of Turku
PETER WAHLBERG
Professor, MD, Specialist in Internal Medicine
Former Chief Physician, Åland Central Hospital
Affiliations
Jarmo Oksi, Asko Järvinen, Mari Kanerva, Marika Nordberg, Dag Nyman, Matti Viljanen, Peter Wahlberg: No ties.
Jukka Hytönen: Consultancy (Reagena Oy), lecture fees (Labquality Oy), travel, accommodation or meeting expenses (Pfizer Oy).
Literature
1 European Parliament. European Parliament resolution of 15 November 2018 on Lyme disease (Borreliosis) (2018/2774(RSP)). http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//NONSGML+TA+P8-TA-2018-0465+0+DOC+PDF+V0//EN