At 27 years of age, Maeve Boothby O’Neill should not have died because of ill-conceived, poorly managed medical studies and, ultimately, medical ignorance. She was a victim no less than anyone else who has been dismissed, disbelieved, improperly diagnosed, and inappropriately treated to where death was inevitable. We should not overlook her death and should use it as a guiding light to pierce the web of disbelief created by those who refuse to entertain doubts. Her illness? It was myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
How did it happen, and is it happening to too many others, not just in the UK, but worldwide? Medical literature is supposed to guide us, inform us, and help us to maintain patients’ health as best we can. In healthcare, there may not always be apparent charlatans but poorly planned studies and misguided beliefs about psychological illness.
I would refer anyone who wants to keep up on the retractions of fraudulent or improperly concocted science to one place on the Internet—Retraction Watch. The latest shocking revelation in this online publication involves a cancer researcher who used manipulated images in several papers. Although he has had numerous publications retracted now, he still maintains his position at a highly respected hospital in a major city in the United States. Unfortunately, he is not alone in this practice, but we are fortunate to have those willing to ferret them out. Even the famed Karolinska Institute has had its issues.
What Is ME/CFS?
The debilitating effects of myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) prevent sufferers from leading their regular lives.
It hinders both mental and physical exertion. Difficulty concentrating, extreme fatigue, and other symptoms may be present. Neither a cause nor a remedy has been found. Addressing the most pressing symptoms is common practice when providing care. But what therapy, when, and for how long, especially if we don’t know what causes it?
Limited access to healthcare may contribute to the underdiagnosis of ME/CFS. Additionally, we may require more medical professionals who are familiar with ME/CFS and capable of identifying the symptoms.
A new blood test could differentiate between patients with ME/CFS and healthy people or disease controls with an impressive 91% accuracy rate. How many facilities or healthcare professionals are using it?
Unfortunately, they placed too much emphasis on psychological causes and referred patients for this type of therapy. Negative attitudes toward patients who were upset about their inability to get symptom relief were rife.
How many times have MS patients (usually women) seen as “attention-seeking” or “noncompliant” or labeled with other terms that failed to help and made their lives more miserable? I knew of a woman with MS that the family therapist castigated and engaged the family in viewing her as unwilling to get well. Once her medical diagnosis was established, I never heard how the therapist addressed the damage done to her self-esteem.
How Has the Stigma Been Addressed?
The damage has been done to more patients than we know. Only the case of Ms. O’Neill has risen to the attention of the popular press in the UK. What of the others?
Following Ms. O’Neill’s revealing autopsy report in the UK, new guidelines have been established by the National Institute for Health and Care Excellence in response to the young woman’s tragic death. They rescinded their previous guidelines and set out new ones based on their findings of poor methodology of studies, debunked theories, and inadequate care. Their aim? The prevention of future deaths.
The new guidelines expressly indicate that healthcare professionals not prescribe:
- exercise-or movement-based treatment for chronic fatigue syndrome
2. exercise or physical activity programs for all age groups, including those with and without specific medical conditions
3. a regimen like graded exercise therapy (GET) that involves predetermined progressive increases in physical activity or exercise
4. sustaining physical activity or exercise programs that are grounded in the theories of deconditioning and exercise intolerance
Would Ms. O’Neill be alive and participating in the normal lifestyle of a 27-year-old woman if her team/teams had adhered to these guidelines? We’ll never know because years of disregard had done the damage. Were the metaphors of her symptoms not understood, or were existing theoretical myths of the origin of her illness stronger than common sense?
The new guidelines state that healthcare professionals should: “Recognize that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatized by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.”
It is more than unfortunate that change only comes about in healthcare, methodology and diagnosing when tragedy, such as a death, strikes. We can only equate it with neighborhoods that have traffic lights installed after someone is killed by a car speeding through an intersection.
It will not bring that person back, and it illustrates that we should not have to wait for that type of tragedy to occur in order for change to occur. Where is the change that we need now, and in what illnesses or disorders? That is the question that must be posed by researchers in all fields of medical endeavors.
