Posts in this thread on "The Comeback study" have been moved to the study's own thread: The Comeback Study: fecal microbiota transplant for ME/CFS
I've just finished watching a Norwegian movie called Sick of Myself. It is a pretty recent satirical film. The main character is Signe, a very desperate young woman with extreme attention-seeking behaviour. This manifests in different ways: she often mentions how other people admire her for something (which is not actually true), she fakes severe nut allergy, tries to make a dog bite her and eventually decides to buy a Russian drug that gives her some weird skin condition. (This was her goal.) She pretends it is a mysterious disease for attention and enjoys how everyone is worried. Doctors know what it is right away, but she says to others that they have no idea. At some point she goes to a "holistic centre", where she is participating in some group therapy kind of thing with other people. It's a quack thing. There is another patient there who listens to her and gets annoyed. This is their convo: Woman: Maybe we should move on? Maybe someone with more severe symptoms should talk now? Signe: You think you have it worse? W: I wish I had your condition. How practical! A visible illness that everyone can see! You're lucky! S: I'm lucky? W: Come back when you've got anxiety, brain fog, migraines, diarrhea, chronic bad breath, trouble sleeping beyong 2 hours, no bright light, no loud noises... So I was obviously wondering if this was really a dig at people with ME/CFS specifically, or poorly understood diseases in general. Her character seemed to be a metaphor for them. In the very next scene the quack is asking Signe if it was the doctors who told her it was difficult for her to swallow (an otherwise probably fake symptom she described earlier). She says, no, it really is. Then he tells her it is her brain that actually makes her think that. She keeps enjoying the newly-found attention she now is getting in her life due to the mysterious disease but eventually gets seriously ill due to some other long-term effects of the Russian drug that she only discovers later. She ends up being miserable with a much worse life than she had before. Friends turn against her after they find out about the lies, she loses her boyfriend, loses her opportunity to become a disabled fashion model, because the disease makes her too ugly eventually etc etc. In the end she goes back to the holistic centre with the quack. Signe: I've started with detox phase-1. I've got terrible brain fog, decreased appetite, soreness throughout the body. I have intense mood swings. I've basically lost all my friends. Indirectly, because of the sickness. They don't want to deal with people like us. I just hope the new drugs can help me. So I at least can look somewhat normal. But we know not to trust the doctors, right? At this point we can see the woman from the earlier scene (the probably pwME) gently caressing her and nodding in agreement. And basically this is the end of the movie, that she is staying with that community. ---- So... is the situation so bad in Norway now that it even manifests in movies like this somehow? Does the ME/CFS community know about this movie there and what do they think? To be honest, I had no idea what the movie was about before watching it and I was really surprised that it turned out to be this.
Thank you for the summary! The movie sounds exactly as I feared just from the Norwegian title, Sick girl. Yes, things are pretty bad here. Yesterday an Official Norwegian Report was published on women's health. It documents that many women are not taken seriously in the health care system, but also at the same time emphasises the biopsychosocial model's magnificence and thus perpetuates what it's criticising. It even has a short chapter on CFS/ME which is enthusiastic about Lightning Process..
A short chapter on LP, uses time to explain "the two sides" biomedical and biopsychosocial, gives twice or more space to BPS (which of course combines what the biomedical model says with "a broader view" and is thus better though they don't write it out). Just wow, way to go on not amplifying one side over the other. @Wyva I've not watched Sick Girl since I as @Kalliope feared it would end up with something like that (and just in general the plot being that she get so much attention for being ill is ludicrous to me, have they met someone that's been ill for a long period of time?). I can't remember that the holistic centre or woman with all the chronic diseases is mentioned in any of the reviews I've seen (which have for the most part been positive).
I would hazard a guess that it gets positive reviews because it is actually quite similar in its presentation to Ruben Östlund movies like The Square or Triangle of Sadness (I know he is Swedish). It is quirky satire about the weirdness of modern society and this seems to be quite "in" now, as Östlund keeps getting Oscar nominations.
Hard not to understand it as condoning and encouraging exactly what the complaints are about. In fact it's pretty much impossible not to. This is really zero degree of separation from "a psychosocial approach will continue until complaints about a psychosocial approach cease". Which is never, of course, because people never stop getting sick. The cruelty is the point. It's a system that explicitly brands some people as disposable based on some moralistic ideology. Frankly, I barely see how it's much different from religious fundamentalism. There is a difference of degree, but that's really it. Where there is no science, it's spiritual and dogmatic, political. The problem with belief systems isn't with the nature of the beliefs, it's that beliefs have no place being imposed on others. Especially in healthcare. Yeah, healthcare basically needs a revolution as radical as going from monarchy to a legitimate democracy, which is several steps. The authoritarian model doesn't work, humans are not altruistic and empathetic enough for this approach, it explicitly works by sacrificing some people just so the system doesn't collapse from all the needs out there.
(Not ME. About medical gaslighting.) Medicinskt gaslighting – tecken på att läkaren inte tar dig på allvar https://www.mabra.com/medicin/tecken-pa-medicinsk-gaslighting/9212528
Members of Riksdagen/the Swedish Parliament held a seminar on ME (and the need for more research, more specialist centers, as well as a national competence center?) earlier this week. Among the speakers were Jonas Bergqvist and Brian Hughes.
Interview with the writer/director of Sick of Myself. https://www.filminquiry.com/kristoffer-borgli-interview/ Not especially revealing other than reference to this painting(s): Syk Pike "The sick girl (syk pike) in the painting is Munch's sister who is dying of tuberculosis"
Thanks to a new agreement between PTS and PostNord, it will soon be possible for elderly and disabled people in Sweden to get their mail delivered to their door Villkor säkrar god brev- och paketservice i alla delar av landet https://pts.se/sv/nyheter/post/2023...rev--och-paketservice-i-alla-delar-av-landet/ Regular delivery point = could be an outdoor communal delivery point for a multi-occupied address such as a block of flats, for example. The new agreement will come into effect on 1 April 2023. You can apply by contacting PostNord customer service. I sent PostNord a message to ask how and where to apply, and they emailed me a couple of questions (is there anywhere outside your door we can deliver your mail, why do you need this service, etc). I'm now waiting for them to make a decision. It would be a huge help to me, so fingers crossed!!
So, they are now telling me that they need a letter from a doctor confirming that I'm unable to walk to my mailbox. The application process suddenly got much more difficult I'll give it a try.
I hope it works out for you. Frustrating how it is so important to avoid a single person not being worthy of support receiving it in any form rather than making support systems easily available to those who could benefit from them.
A post containing tweets on the topic of a seminar held in Oslo on LC/ME/CFS has been moved to the seminar's own thread on the forum: Norway: Article about ME seminar with security
Rather have 3 people working the requests to make sure noone gets something they're not supposed to than one postman having to walk a couple meters extra.
At least 4 people are involved at this point. They demand that I send them the original letter/piece of paper (they don't accept a digital copy of the doctor's letter). Since I'm unable to post letters myself this means that I will have to find somebody willing to come to my house and pick the letter up and drop it off at the post office for me.
