the other chapters.
In combining Lyme disease and Long Covid in chapter two, Dr. O’ Sullivan seems to be emphasizing the difficulty in verifying( scientifically) these two diagnoses. Lyme disease has been an established diagnosis for more than 40 years, with a known causative agent, Borrelia burgdorferi. Apparently, these bacteria may be present in small amounts in the body of the infected individual. In addition, they are hard to grow in blood cultures. As a result, the focus of testing is to look for a specific antibody indicating that the individual has successfully developed an immune response to the infecting organism. Testing for the antibody has been established over the years. The guidelines accepted by the Center for Disease Control and Prevention( CDC) in the U. S. and the National Institute for Health and Care Excellence( NICE) in the UK mandate two stage testing. The initial test is the enzyme-linked immunosorbent assay( ELISA), and the second is the Western Blot test( for dogs, there is a PCR test). Both of these tests must be positive to establish the diagnosis of Lyme disease. That, however, is not necessarily the final word and here Dr. O’ Sullivan moves to one of her primary concerns regarding medical labelling. The heart of the issue is that the ELISA and Western Blot are not diagnostic tests. They are only pieces of a diagnostic jigsaw and are meaningless without the clinical story. She emphasizes that this is the case for most diagnoses, not just Lyme disease. This is one of the primary themes that she revisits through the remaining chapters. Patients want tests in order to obtain a diagnosis. They need a diagnosis to be able to explain to themselves how and why they feel the way they do. Most of us are aware of the difficulties encountered by patients trying to establish a diagnosis of Lyme disease, including discussions on social media and health related magazines. Controversy and frustration come to mind; similarly with the much newer diagnosis of Long Covid. This is defined by the WHO, under the name post Covid-19, as the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection with these symptoms lasting for at least two months and with no other explanation.
Dr. O’ Sullivan apparently spent considerable time volunteering in an intensive care unit during the Covid pandemic. She acknowledges the serious condition of the patients she saw and accepts the lingering effects of the illness and the required treatments. Her observations lead her to believe that Long Covid is associated more closely with a mild initial infection that did not require hospitalization. Here she moves toward a psychosomatic explanation for the symptoms. She is not dismissive of these patients, rather she advocates assessing them for real underlying problems, particularly anxiety and depression; hopefully leading to appropriate treatment.
In chapter 3, I found her discussion of autism to be clear and erudite. Her interviews with patients and / or the parents / legal guardians of patients brings into focus the dilemmas of severely cognitively impaired individuals as compared to high-functioning and successful individuals, with detailed coverage of a range of situations between the two extremes. Taken to its logical conclusion, the term autism loses any relevance as a single medical descriptor of symptomatology. Two examples are those of a 20-year-old man diagnosed with autism at the age of 2( Elijah) and Miles, a man of 60 who was diagnosed with autism in his mid-50s. Miles had a checkered career as a banker, moving from company to company but he had a successful marriage and three adult children. When two of his children were diagnosed with autism in their 30s, one of them suggested to Miles that he also was probably autistic. Miles found the diagnosis explained a lot of the problems that he had encountered during his lifetime and embraced his new condition.
Elijah grew up in a loving family and thanks to extraordinary efforts by his mother in particular, avoided institutionalization even though he was essentially non-verbal and had significant intellectual disabilities. He eventually mastered a few phrases and was able to hold a simple job filling fruit bowls and emptying the dishwasher at a local business. He enjoys going to Starbucks for a latte. However, Elijah requires constant supervision, and his mother describes his unsupervised behaviors as those of a 4-year-old. She cites her frustration with what she terms the“ mild voice in autism discourse.” She sees this as affecting services and funding for children like Elijah. She describes a school for autistic children, close to their home, which will only take children with a normal IQ who can meet a national curriculum.
Miles has a very different approach to autism. He equates autistic with different( neuroatypical). He strongly believes that autistic individuals should be their true selves. For example, he believes that no one should try to control or change the behavior of an autistic individual. This seems to underscore an idea currently prevalent that intellectual disability is entirely different from the autism diagnosis currently exploding in the UK and U. S. I found Dr. O’ Sullivan’ s discussion of the clinical requirements for the diagnosis of autism and her thoughtful evaluation of the concern for an“ epidemic of overdiagnosis” to be valuable and based on credible research from U. S., UK and European institutions. It parallels exactly the current concerns being voiced in our lay press, on television and social media.
Chapter 4 is a discussion of risk factors for the development of various cancers based on genetic testing. There is a significant focus on breast cancer and the difficulties women face in deciding whether or not to undergo prophylactic procedures. I think the takeaway point here is that most of the women would benefit from knowledgeable counselling
( continued on page 24) August 2025 23