A young woman films herself while lying on a wooden floor. It is dark, the image grainy. She tries to get up. Her breathing is heavy from the effort. It does not work. Later in the room there is a bed. She tries again, drags herself through the room and climbs on the blankets, panting. She falls down exhausted.
This is how the impressive documentary Unrest, which premiered at the Sundance Film Festival earlier this year, recently appeared in the Netherlands via iTunes or Vimeo. The woman in question is called Jennifer Brea, and has myalgic encephalomyelitis (ME, also called chronic fatigue syndrome). "As long as I can remember, I wanted to swallow the whole world. I dreamed of places I wanted to visit and things that I would see. " She traveled a lot, was engaged to her big love, to the promotion.
And then she became ill. She did not recover after a severe fever attack. "I went to the kitchen to get a glass of water and could not move afterwards," she says in the film. Extreme exhaustion after exercise is the most characteristic symptom of ME. Millions of people worldwide suffer from the disease.
Little is known about the cause; relatively little money is being spent on research. In Unrest some doctors speak who think that ME is an immune disorder. This year two studies of research groups appeared that found that the cells of people with chronic fatigue produce less energy than usual. 'It is definitely a physiological effect that we observe, and not psychosomatic', an involved scientist in the British magazine New Scientist emphasized.
Yet many people think that ME is not a real disease. Brea shows television fragments in her film. In the first it is called the 'yuppie flu'. Another: "Some think it is a fabricated condition." A comedian: "So somebody was collecting for ME last. That is the one of: no sense to work today. " The word 'hysteria' falls.
The fact is that most doctors think that ME is a psychological problem
Brea says that at first she was told that her exhaustion and pain were between the ears. Maybe she suffered from an old trauma, suggested a neurologist, or stress. Such an experience is the rule rather than the exception among people with ME. Brea thinks that gender has to do with it. About 85 percent of patients are women. "I wonder if that's why they do not believe us."
The fact is that most doctors think that ME is a psychological problem. Experts came up with a theory about twenty years ago: these people suffer from the misguided belief that they have a medical condition. As a result, they take a lot of rest and they suffer from 'deconditioning' - they are grandiose out of shape, so to speak. So they themselves, unconsciously, caused their ailment and keep it themselves. 'A quarter of us are bound at home or bedridden', says Brea. "And yet we have to live with this stigma."
17 Nov
Asha ten Broeke
✔@ashatenbroeke
Replying to @ashatenbroeke
Bronnen (1/2):
De documentaire 'Unrest'
https://www.unrest.film/
Cellen bij ME produceren minder energie
https://www.newscientist.com/article/2152357-blood-cells-in-chronic-fatigue-syndrome-are-drained-of-energy/ …https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/ …
Linda van Campen over deconditionering
https://www.youtube.com/watch?v=SP-8O6lczcQ …
https://twitter.com/ashatenbroeke/status/931450428201537536
Asha ten Broeke
✔@ashatenbroeke
Bronnen ea interessante links (2/2):
Over de behandeling van ME
https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/ …https://undark.org/article/chronic-fatigue-graded-exercise-pace/ … https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm …https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm …https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm …https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html …http://journals.sagepub.com/doi/full/10.1177/1359105317722370 …https://www.coyneoftherealm.com/blogs/news/what-to-look-for-in-the-special-issue-of-journal-of-health-psychology-concerning-the-pace-trial …
10:14 AM - Nov 17, 2017
Opinion | Getting It Wrong on Chronic Fatigue Syndrome
The standard therapies have been largely useless.
nytimes.com
The treatment consists, according to theory, of behavioral therapy that patients must learn to have 'better' thoughts about their condition; that their complaints do not come from a physical illness, that they can do anything, that recovery is possible.
In addition, there is graded excercise therapy, which means that someone with ME should slowly become more and more active, in order to get in shape again.
ME patients soon reported that the treatment often did not work or was counterproductive. Many doctors put that aside with an appeal to a major British study that would prove its effectiveness. But on closer inspection it turned out to be as leaky as a basket; the scientists had tampered with the figures, so they had noticed improvement that had not occurred.
What scares me to death is that you can disappear because someone tells you the wrong story about you
Jennifer Brea
New research suggests that deconditioning is not the issue. Like that of cardiologist Linda van Campen, who said after the screening of Unrest in the LUMC: 'So a kick under your ass, just do more and it will all go away: bullshit.'
This is what stigma does. It leads to inadequate treatments, lack of research money and a collective disbelief that makes the suffering of people with ME invisible.
"Illness does not scare me, and death does not scare me," Brea says in her film. "What scares me to death is that you can disappear because someone tells you the wrong story about you."
Google translated version.
He has a tendency to promote a lot of things without a good evidence base, but he'll treat his guests and topics very compassionately.
