One of the sessions at today’s MSF Scientific Day conference is about the MSF’s TB & ME project, a site featuring blogs by people around the world who are undergoing treatment for multidrug-resistant tuberculosis (MDR-TB). The blog provides lots of information about TB and how drug resistance develops, but the focus is on the personal stories of individuals from places as disparate as the UK, Armenia, India, Swaziland and Australia. On the PLOS Medicine blog in 2011, Dr. Phillip du Cros explained the theme of TB & ME like this:
What goes through a person’s mind when they are told they have multidrug- resistant tuberculosis (MDR-TB) and face at least eight months of injections and nearly two years of medication? What are they thinking when they find out that the drugs they have to take will make them feel sick, and the side-effects they will experience could range from severe to life-threatening?
The stigma of having TB can be severe. An infected person must be isolated or wear a mask and in some cases, the weakness of a TB patient can be mistakenly seen as a sign of AIDS. TB & ME has a number of posts tagged with the keyword “stigma” which provide some insight into what it’s like to live with this disease.
The patient experience matters. That seems obvious to those of us with an anthropological mindset, yet it seems that it’s overlooked or disregarded far too often. This project is refreshing and the bloggers are powerful advocates simply by telling their own stories. I wasn’t able to watch the conference session that analyzed the effects of blogging on the patients, but the presentation slides are online and suggest that they felt more empowered, had a sense of solidarity with other patients, were more likely to adhere to the treatment, and that blogging enhanced the relationship between the patient and medical staff. I’ll post a link to the video of the session when it’s online.