Unrest - reviews and general articles

Through Karina Hanson, who was forcibly institutionalised for three years (literally dragged from her family home in Denmark by authorities), we see how psychiatry’s historical appropriation of ME/CFS has resulted in the systemic mistreatment of physically vulnerable people.
Through Whitney Dafoe, we see ME/CFS in its most extreme form, where eating, moving and interacting become intolerable. Whitney lies silent in a darkened room, tube-fed and wearing noise cancelling headphones to protect him from sensory stimulation which worsens his already alarming condition.

Whitney’s father, Professor Ron Davis, is a renowned researcher. He’s now devoted his career to curing his son, offering new hope to millions as he engages in desperately needed (and criminally underfunded) biomedical research.
It’s like having the flu with a hangover while someone turns gravity up to 100.
 
The article can be accessed if you turn scripts off on that page. It's not very good or interesting, but could be worth. Probably not worth reading imo.

It looks like it is written from an Indian perspective.

edit - Here's the intro and conclusion:

A little-known condition seems to be taking a catastrophic toll on millions and most of them are women, even as the medical fraternity debates whether it exists or not. It’s time to talk about chronic fatigue syndrome.

By the time Nima Mehta (name changed) was 15, she had the skill, drive and dream to carve out a career as a classical musician. Mehta, who lived in London at the time, attended a specialist music school. Apart from regular schoolwork, her days consisted of six hours of violin practice, and she loved every second of it. Till one day when she couldn’t play any longer. During a routine violin practice, Mehta’s torso was suddenly wracked with immense pain. By the next day, the pain had spread to her entire body. She felt extreme exhaustion and couldn’t get out of bed. Her doctor assured her it would go away, but from that point on she couldn’t get up.

Several blood tests, a neurologist and a rheumatologist later, nothing changed. Mehta was in bed for six weeks straight, unable to hold even a mug. In the end, one doctor gave her the number of a psychiatrist, while another told her it was in her head. “That was so disappointing. It was very true and real, I wasn’t making it up.” Mehta was forced by her mother to take short walks, and she started acupuncture, both of which helped. At school, she was assigned a teacher who focused on remedial education. Rigorous practice sessions were a thing of the past, and Mehta thought her dream of becoming a violinist had come to an abrupt end. She was finally diagnosed with chronic fatigue syndrome (CFS) at a clinic that specialised in it, but was prescribed cognitive behaviour therapy, a psychotherapy treatment.

...

FATIGUE FIX
A six-step call to action that can set CFS patients on the road to recovery.

Fix your diet
CFS sufferers should be focused on getting a balanced, healthy diet. Choosing healthier, whole-food options and cutting out processed foods, sugar, caffeine, alcohol and saturated fats is imperative.
Rest effectively
An efficient way to battle CFS is to fix sleep disorders like sleep apnea and insomnia. Many CFS patients report having non-restorative sleep (waking up tired even after sufficient periods of rest), and as a result their symptoms worsen. Complete, restful sleep can help diminish some of the tiredness.
Supplement correctly
It’s been reported that supplements containing magnesium, Omega 3 fatty acids and Vitamin B12 are helpful, as are a variety of antioxidants like Vitamins A, C and E, CoQ10 and pycnogenol. Melatonin, a hormonal sleep aid, can enable sufferers to get good, quality sleep.
Look into probiotics
Anecdotal evidence from CFS patients and doctors shows that probiotics help symptoms. Look for probiotic capsules that guarantee live bacteria (these often need to be refrigerated), multiple strains (the more the better) and ones that will deliver at least 1 billion or more Colony Forming Units.
Try low-impact workouts
Try low-energy, low-impact exercise routines and make it a habit to include a little bit of movement in your daily life. CFS patients should avoid strenuous workouts as that can lead to a crash later, but mild exercise is helpful physically and mentally.
Adopt alternative therapy aids
Acupuncture has been reported to help reduce fatigue by balancing the chi—or vital energy—that flows through the body. Moxibustion, a heat therapy common in Chinese medicine, is effective in balancing the immune system.
 
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Seems to be a cover in Vogue
Chronic fatigue syndrome: The invisible disease affecting millions of women

Haven't read the article as it is behind paywall, but it certainly had a new approach for illustrative picture.

Spot on for me, at least.. :whistle:
Stupidest picture ever, and that's saying a lot. Haven't read the article and can't be bothered working out how to. Probably trivial fluff anyway. The first words annoyed me - "a little-known condition" - it wouldn't be so little-known if they'd done an article on it 30 years ago.
 
That six-step fatigue fix looks like they are talking about chronic fatigue/overwork, not chronic fatigue syndrome. They are talking about a teen-ager whose days included six hours of violin practice. She probably just wore herself out.
 
Article in one of the main Dutch national newspapers "De Volkskrant" about unrest:
Chronisch vermoeidheidssyndroom ME is geen 'yuppiegriep' (CFS isn't yuppy-flu)

The author quotes Jennifer Brea and explains why CBT, GET and PACE are bad so it's a positive article for uninformed readers. :thumbup:

https://www.volkskrant.nl/opinie/ch...hash=724b1eb54ec880d12072378e85319d2149341536

It's members only but I'm able to read it (it seems the first article is free).
 
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.
 
Just saw this:

No idea what Dr Oz is like, but he's got millions of followers on twitter, so it's certain to get quite some reach.

I watched Dr Oz on television for a few years, and also heard him speak. Depending on who else he brings on his show, to offer an opposing viewpoint, this could be a big win for ME awareness in the US.

Now I can tell my family and friends to watch Dr Oz in December so they can learn more about the “hidden health crisis”.

 
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No idea what Dr Oz is like, but he's got millions of followers on twitter, so it's certain to get quite some reach.
He's ... nice. And very good at dumbing things down. A bit too good, perhaps :-P 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.

It looks like he's covered it several times, but has simplified it. Eg, applies to women, focuses on fatigue. But he has had good guests for ME/CFS over the past couple years, and based on Jen's past performances, she'll do a great job of covering the nuances which he misses.
 
He's ... nice. And very good at dumbing things down. A bit too good, perhaps :p 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.

It looks like he's covered it several times, but has simplified it. Eg, applies to women, focuses on fatigue. But he has had good guests for ME/CFS over the past couple years, and based on Jen's past performances, she'll do a great job of covering the nuances which he misses.

And if it encourages people to see the movie, that would be terrific. This Dr Oz appearance seems like a big win to me.
 
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