“That's why they don't believe you, you don't look sick!”: Creating Medical Credibility and patient visibility for ME/CFS through Television

Sly Saint

Sly Saint

Senior Member (Voting Rights)
by Giada Da Ros

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.
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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 not just for hist
orical reasons, but for two other strong motives: if it’s true that new spa
ces, like the Internet and social media, opened up and gained strength in the meantime,
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https://www.academia.edu/43500038/_...IENT_VISIBILITY_FOR_ME_CFS_THROUGH_TELEVISION

eta: the author

Giada Da Ros
@Giada_Da_Ros
TV critic; President of the CFS/ME Italian Association (and CFS/ME patient since 1990); Socratic.
https://twitter.com/Giada_Da_Ros

http://independent.academia.edu/GiadaDaRos/Papers
 
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challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse.
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No. At least that's not my understanding.

The philosophical approach that's developed about illness since the 80s possibly.

Even that's been driven more by the attitudes & needs & greed of insurance companies, governments in trying to limit benefits and those eager to find a niche and make a name for themselves on the backs of other people's struggles.

In the 50s and before, prolonged recovery from viral illness and the need to rest and recuperate were understood.

Reading the documents unearthed by @chrisb, among others, it's fairly obvious that there was a glimmer of understanding back in the early 80s.
 
Hello! Giada here. A friend alerted me you were talking about the paper I wrote. I finished it in March and I posted it two days ago on Academia.edu as an "unpublished paper". I am looking for someone to publish it, if they are interested. We'll see.

I do believe there were many patients who challenged the system, and the examples I put forward show that in my opinion. If there was someone who was actively aware that there was a need to change how things were perceived those were CFSME patients. As far as the the Italian experince go, as patients, we definitely re-appropriated the discourse. Probably it was ours in the first place. I think I showed it well through mine and professor Tirelli's experience. And I chose only a couple of examples. I did tons of interviews in the 20 years I've been President of the CFSME Italian association.

"We" in this context means human beings.
 
Welcome to the forum Giarda. I look forward to hearing more about the activities of the CFSME Italian Association.

Later, you might like to think about making a thread for CFSME Italian Association news - or even a regional thread - 'News from Italy'. It is going to be very interesting to see if attitudes to ME/CFS change around the world as a result of the likely large number of people with post-Covid symptoms.
 
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