“That’s why they don’t believe you, you don’t look sick!”: creating medical credibility and patient visibility for ME/CFS through television, by Giada Da Ros
Article abstract:
Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome community tried to create medical credibility and patient visibility for a chronic, controversial disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse. Keeping a cultural approach to health communication as a phenomenon that maintains, produces, and transforms health and illnesses, I analyze news, fictional and talk-show programs.
My aim in this paper is to show how, since the end of the 20th century, the ME/CFS community tried to create, through traditional and original television spaces, medical credibility and patient visibility for what has historically been a very controversial disease, fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having the patient ri-appropriate the discourse.
I will also show, through the Italian experience (and my own personal one), how non-traditional spaces were used as viable, fecund means for disseminating health knowledge, also pushing for a virtuous model of relationship between physician and patient.
In doing so I will mainly focus on programs that aired at the turn of the century. This is not just for historical reasons, but for two other strong motives: if it’s true that new spaces, like the Internet and social media, opened up and gained strength in the meantime regular TV still maintains a broader and less topic-focused approach that can reach outside the intended foreseeable target audience; also, with regards to ME/CFS, some of the main communication issues are now still the same as in the beginning, and it is worth looking at the roots of how we talked about it to draw inspiration on what worked and what should be done differently.
Terri asked Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force), what NIH is doing to address Covid-19 “long-haulers” risk of developing ME and CFS and pointed out that there has been very little funding invested in research into ME and few medical providers know how to take care of people with ME. There are still no FDA approved drugs to treat ME.
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19.
Here we report the results of a randomized, placebo-controlled trial using 
To document the effect of repeated 
Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome (ME/CFS), is a chronic condition with: a range of fluctuating symptoms, no cure, and can cause a person to be bedbound. This case report identifies recommendations for dental care based on the experiences of a female 17-year-old living with severe ME/CFS.
The aerobic energy system is “broken” in ME/CFS and cannot be fixed with exercise (i.e., graded exercise therapy, also known as GET).
