Katherine Lanteigne is a fierce advocate for New Brunswick patients who are suffering from unexplained, abnormal neurological symptoms. She is now calling for the withdrawal of a study that published in the journal JAMA Neurology. Even though this report has created quite a stir, it’s coming under fire for research bias and privacy violations on behalf of patients with an unexplained new neurological syndrome. That reality has become more urgent. Most importantly, Lanteigne brings to the fore the suffering of those affected, like Gabrielle, a twenty-three-year-old who began developing debilitating symptoms in 2019.
Dr. Alier Marrero, a neurologist from Moncton, has assessed over 500 patients. He found powerful correlates that demonstrate a relationship between environmental exposure and a rare neurological autoimmune fingerprints. Dr. Anthony Lang’s recently published work suggests that many of these earlier diagnoses may have been incorrect. This has ignited a passionate discussion between members of the medical establishment and advocates for patient autonomy.
She was able to find almost 30,000 pages of documents by requesting information on these cases. This is what laid the groundwork for the current dilemma. Dr. Gerard Jansen, a neuropathologist, discovered some pretty interesting things about the cases. He recently reached the surprising conclusion that eight people previously suspected to have died of a neurodegenerative disease didn’t die of an unknown disease after all, contrary to initial predictions.
The Struggles of Affected Patients
Gabrielle’s case may be extreme but it is not unique to outpatients patients like Gabrielle. Her quality of life has drastically changed as she lives with debilitating fatigue, memory loss and is now using a cane or a wheelchair for mobility. Her personal odyssey started in 2019, when she initially presented symptoms that became highly symptomatic since, for the last three years, profoundly affecting her quality of life.
“This study strips patients of their dignity, it runs roughshod over their protected privacy rights and is another example as to how and why patients are retraumatized by the medical establishment that they should be able to trust,” – Katherine Lanteigne
Lanteigne signals the need for continuing discussion around this dynamic neurological syndrome. This well-intentioned conversation has generated confusion and mistrust with patients and families. Yet she claims that the studies done so far have neglected to recognize the individuality of each person impacted, or the needs of the people affected.
Dr. Marrero backs up Lanteigne’s worries, saying that hundreds of patients and families have come to them with fears about lost privacy. He points out how the small number of cases makes it pretty easy to profile people. He considers this practice “troubling.”
Controversial Findings and Research Ethics
Dr. Gerard Jansen’s study became public without the knowledge or consent of the Public Health Agency of Canada (PHAC). His involvement in defining the “progressive neurological syndrome of unknown etiology” raised further ethical questions. In response to these concerns, industry expert Lanteigne noted that Jansen never claimed authorship of the case definitions distributed to healthcare practitioners.
In September 2020, Dr. Marrero teamed up with colleagues Sarmad Al-Shamaa and Annette Thebeau to issue a Critical Need Alert. They alerted the province’s chief medical officer of health to an unexpected increase in atypical rapidly progressive dementia cases. This letter acknowledged the critical and immediate need for transdisciplinary research initiatives to better understand the origins of these neurological disorders.
Dr. Anthony Lang’s study reassessed 25 out of 222 patients previously diagnosed by Marrero, ultimately finding that many had been misdiagnosed due to inaccurate clinical assessments and an overreliance on supplementary testing. This conclusion has sparked even more outrage, leading Lanteigne to accuse the university of compromising the objectivity of the research process.
“By accusing us as authors, and sowing unjustified doubt on a scientifically very strong and courageous study, Ms. Lanteigne interferes with the patients’ potential to get a real diagnosis and potential treatment,” – Gerard Jansen
Ana Fernandes, the UHN’s manager of external communications, responded to the allegations of research bias. She stressed that UHN does not have authority over whether a scientific article is published or retracted. She stressed that the study was the result of a scientific process. Additionally, third-party peer review by one of the world’s leading international medical journals was conducted.
“The study published in JAMA Neurology followed the established scientific process, including third-party peer review by an internationally respected medical journal,” – Ana Fernandes
Fernandes went on to state that it is highly unusual for UHN to respond publicly to unsubstantiated allegations or speculative claims. These announcements have done little to calm the fears expressed by Lanteigne and other advocates.
Calls for Transparency and Ethical Practices
Lanteigne has publicly and vocally challenged these practices through activism at multiple institutions. She wrote to the UHN research ethics board and called the MIND Clinic at Horizon Health Network in Moncton. Her tireless efforts hope to inspire an on-going re-direction of ethical practices among research involving this still enigmatic neurological syndrome.
The implications of these findings are far reaching, particularly when Lanteigne estimates 50 preventable patient deaths associated with this condition. She emphasizes that transparency in research is essential for building trust among patients who rely on accurate diagnoses and effective treatments.
“These disturbing facts create further confusion and mistrust,” – Alier Marrero
As conversations continue both within medical communities and advocacy circles, the calls for retraction are not enough. The contention surrounding the legitimacy of the research highlights broader issues regarding patient privacy rights and the ethical responsibilities of medical professionals.
