What is the story of ME/CFS? Is it a story of illness beliefs? Is it all just in the patients’ heads? Are we malingerers? Or are we terrorists like the media likes us to belief given the recent flux of “researchers receive death threats” articles? Could it be that there is more than one story to tell?
When you use the vague Oxford criteria for CFS, there is no doubt that there will be patients whose main problem is depression, burn-out, anxiety, or post traumatic stress disorder. If you look you will probably find malingerers. I do believe that some patients have send angry or even threatening emails to doctors, scientists and psychiatrists. I am not making any excuses for their behaviour, but are those dozen or even couple of dozen individuals representative for the ME/CFS patients as a whole? Do they tell the story, the whole story? The prevalence of ME/CFS (yes, using the more strict Canadian Consensus Criteria) is estimated at 0.12 to 0.3% of the population. You do the math for your own country.
What about:
- the 25% ME Group representing the most severely affected patients who are bedbound or at least homebound?
- the bedbound patient who wrote a book of poems in the hope of raising enough money for treatment?
- the patient who wrote 2 bestsellers?
- the patients who receive disability benefits and try to give their life some meaning?
- the patients who don’t get benefits and have to rely on their family, handouts or their savings?
- the less severely affected patients who go out to work, full-time or part-time?
- the patients who are self-employed and work from their home (or bed)?
- the patients spending the money they have on treatments (real or snake oil) in the hope of getting better?
Those stories are almost always untold. Today I found this TED Talk (ideas worth spreading) by African writer Chimamanda Adichie, a Nigerian woman who shows that she has a better grasp of handling information, the pitfalls of prejudice (single story) and the importance of checking facts than some Western journalists — probably even better than most people. Take note and enjoy the talk. She makes her audience laugh, sometimes uneasily as they realize that they too have their single story views.
PS: The talk is not about ME/CFS, but about the danger of hearing only one side of a story. Once the video starts, you will be able to activate subtitles, which are available in 35 languages.
| We are each burdened with prejudice; against the poor or the rich, the smart or the slow, the gaunt or the obese. It is natural to develop prejudices. It is noble to rise above them. |
{ 4 comments… read them below or add one }
Nice story, Johan! Yes it’s important to keep spreading the word about M.E. Although not everyone wants to hear it. They are too busey with themselves.
Marije
Maybe it is in the way we are telling the story? Too serious, too angry, too much in the past, and not enough humour or self-mockery.
I had seen this talk by Adichie a while back. I was absolutely touched by it. In fact I have started a community inspired by her talk that aims at breaking stereotypes based on race, religion or nationality. If you’d will like to join the community please feel free to do so. Lets contribute together and find a way to tackle this complex issue. Here is a link to the community. Feel free to join.
http://dangerofasinglestory.ning.com/
I am not really into joining more communities, but good luck with your initiative.