This study examined how people with multiple sclerosis (MS) used internet resources, such as medical articles and patient narratives found on patient-based websites, to learn about the new and ‘controversial’ vascular theory of MS – chronic cerebrospinal venous insufficiency (CCSVI). In total, 49 people with MS participated in this study through one of two means – online in-depth asynchronous or telephone interviews. From the data collected, this study found that the internet can be both a good and a bad place for health information, that patients are openly questioning the traditional sources of medical knowledge on MS through online forums, and that the decision to have the CCSVI procedure is complex and dependent on the subjective assessment of a patient living day-to-day with their debilitating disease. A brief discussion of the conclusions follows.

Participants developed reflexive communities with other MS patients online. Within these communities, patients were able to provide each other advice on their disease, treatment options and supplements, as well as share their experiences of living day-to-day with a chronic and disabling disease. Participants were able to learn about their disease from the personal stories posted in online forums, discussion boards and Facebook pages. Many participants reported that the online resources they accessed helped them come to terms with their illness, aided the in the development of a new illness narrative and increased their desire to search for information that may help in their battle against their disease.

Internet resources also provided an avenue to challenge medical authority. Authority figures of the CCSVI movement were created online, who challenged the traditional sources of MS knowledge – neurologists. Many participants argued the CCSVI procedure needs to be taken up in Canada. Participants discussed that CCSVI was a vascular anomaly that occurs in patients, and should be treated as such so that any individual with kinked, blocked or malformed veins could have access to the procedure. However, while the knowledge and information that authority figures provide has been accepted by some participants, it has been challenged by others. This study found that the internet is not a neutral forum in which patients can access unbiased information about their disease, but that certain authority figures may be influencing where, when, and if certain information is presented to the public.

From the knowledge that patients gained through their use of online resources, they were able to develop autonomy and separate their agency from the dominant structure of medicine. Numerous participants said that they have “fired” their neurologists, made the difficult decision not to inform their specialist if they have had the CCSVI procedure and openly questioned the link between neurologists and pharmaceutical companies. That being said, participants in this study still respected and trusted the knowledge and opinions of certain medical professionals, namely the ones who they thought listened to, and cared about, what they have gone through in their daily plights with their debilitating disease. Many participants turned to their general practitioners, or family doctors, for advice and clarification on the information they found through online resources. Although general practitioners were reportedly willing to provide clarification of online medical information that patients found, patients also said family doctors would provide no direct advice on whether they should seek the CCSVI procedure, leaving the decision up to the patient.

Patients were able to access both medical information and patient stories online that helped convince many of the participants in this study that having the CCSVI procedure was safe and may, in fact, provide them with symptom relief or improved mobility. Nevertheless, the decision whether to explore the CCSVI procedure was subjective and not simply based on the stage or type of MS a patient was diagnosed with. The decision was dependent on each individual’s assessment of how the disease impacted their lives. Many participants addressed the uncertainties of their disease; the uncertainty of when the disease may progress and the uncertainty of how the disease may impact both their life and their family’s life. Several participants found that the CCSVI procedure was a way to reconnect with a sense of self that they had lost due to the disabling nature of their disease. But, not every participant supported having the CCSVI procedure. The participants who chose not to explore CCSVI discussed their own uncertainty about the procedure that was based on the lack of reproducible scientific evidence of the specificity and sensitivity of CCSVI in MS patients. Additionally, the varying lengths of time many MS patients are symptom free after having the CCSVI procedure was discussed by those who chose not explore the CCSVI procedure. The handful of participants who did not explore the CCSVI procedure, said that their sense of self had not been compromised by their disease enough to warrant having a medical procedure that still has much uncertainty surrounding it in the medical community.

The internet is increasingly becoming a source that many MS patients are turning to for information on the CCSVI procedure, and how to manage their disease on a day-to-day basis. But the internet did not solely influence patients’ decisions to have the CCSVI procedure; instead participants told their stories of living day-to-day with their debilitating disease, and the varying effects that the disease has on their life and their sense of self as the main reasons for whether they explored the CCSVI procedure. 

 Jenny Kelly, MA

Department of Sociology - University of Calgary

Email: jekelly@ucalgary.ca

Thesis Summary posted with kind permission - WaYnE

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