It has recently come to my attention that several high level organizations to do with health care in Canada have included links on their websites that include questionable information, or entirely leave out information. For instance, the Association of Medical Microbiology and Infectious Diseases Canada (AMMI) links only two Lyme Guidelines on their website, those of the Infectious Diseases Society of America (IDSA), and the National Institute for Health and Care Excellence (NICE). They have not included the Guidelines prepared by the International Lyme and Associated Diseases Society (ILADS).
AMMI has also listed some “reliable sites that can help answer your questions” which includes that of the American Lyme Disease Foundation Inc. (ALDF). ALDF is in itself questionable (https://www.lymedisease.org/lymepolicywonk-bogus-grassroots-groups-whos-who-and-whats-what-with-the-american-lyme-disease-foundation-aldf-2/) but, of even more importance, is the fact that there is a link on the ALDF website to LymeScience.org.
LymeScience “is an independent, volunteer-run patient advocacy and science education web site with a mission of sharing reliable and helpful resources about Lyme disease.” No names, affiliations, expertise, or experience are noted anywhere on the website. The website seems to have been formed to give an outlet for all things associated with the IDSA and to malign doctors, researchers, patients, and advocacy groups associated with Lyme and tick-borne diseases. The site goes so far as to say that “The easiest way to determine if an entity is dedicated to dangerous chronic Lyme pseudoscience is if it refers patients to predatory “Lyme literate” doctors or other practitioners of unscientific medicine” and goes on to list a number of organizations that they “recommend avoiding”. This list basically includes anything with Lyme in its name (except ALDF) and any university that accepts research funding from Lyme organizations/patients. The following are just a few groups/associations LymeScience recommends avoiding:
- Global Lyme Alliance
- LivLyme Foundation
- The Steven & Alexandra Cohen Foundation
- Canadian Lyme Disease Foundation (CanLyme)
- Canadian Lyme Science Alliance (CLSA) and Canadian Lyme Consortium
- Caudwell LymeCo.
- Brian Fallon’s Columbia University Lyme and Tick-Borne Diseases Research Center
- Ying Zhang’s group at Johns Hopkins University
- Eva Sapi’s University of New Haven Lyme Disease Research Group
- The Dean Center for Tick Borne Illness
- Mount Allison University Lyme Research Network
- G. Magnotta Lyme Disease Research Lab at University of Guelph
- The group at Duke University formerly associated with Neil Spector
As an FYI, the above were taken directly from the website and are typed exactly as they were. They even diminished, in my opinion, the doctors that are mentioned by not including their title.
LymeScience’s biggest “fight” appears to be with the use of “Chronic Lyme”, something which I also take some issue with. Chronic Lyme is not an actual diagnosis but is used by many to describe a number of things, such as those that are chronically ill due to an undiagnosed or misdiagnosed case of Late stage Lyme. It is also used by many with ongoing symptoms after treatment, although some would call this Post-Treatment Lyme Disease Syndrome.
There is considerable research now available to suggest that Borrelia burgdorferi can persist after treatment; however, if you listened to those responsible for LymeScience, you would not accept any of this research as funding sources for this research may include Lyme organizations/patients. Is LymeScience actually suggesting that researchers are being swayed by those that have supplied the much needed funding? I guess if you are an anonymous group you can say pretty much whatever you want, and they do.
Those of you in Nova Scotia may also recognize the name LymeScience from a retweet that our Chief Medical Officer, Dr. Robert Strang, posted in January, 2019, and the backlash that followed. Unfortunately, it’s quite common for those in the health field to belittle chronically ill patients that believe that they might have Lyme and tick-borne diseases. Where is that attitude coming from? The top?
If AMMI is ultimately linking to this group, and the federal government, as well as at least some provincial governments, are linking to AMMI, is this not something everyone should be concerned about? Shouldn’t those that are looked at as our “experts” on Lyme and tick-borne diseases in Canada be required to review all research, not just that which fits with their preconceived ideas/opinions?
As those of you that have read my earlier blogs know, I frequently refer to the book “Conquering Lyme Disease” which was written by Dr. Fallon, and others, at the Columbia University Medical Center. Of the many books on Lyme that I have read, I found this one totally unbiased. It looked at all aspects of this issue and didn’t lean toward one way or the other. However, I was told by a Canadian Lyme disease “expert” that he hadn’t read the book because it was differing opinions.
Nothing about Lyme and tick-borne diseases is black and white. There are numerous shades of greys. Yes, there are many differing opinions and yes, some may be questionable; however, if you are deemed an “expert” you should at least be cognizant of all the information that is now available and you should absolutely not be linking to sites that degrade those that are suffering and trying to help others, and themselves.