Maybe I read the part you are referring to wrong, but I tought he was referring to that better catering to the needs of patients from the get-go could have provided better outcomes. That would be more in line with the public debate that has followed the publication. ‘Facilitation’ (Nor. ‘Tilrettelegge’) is probably not the best translation either. I would argue that the semantics are a bit different in this case.
From the study abstract: "Public transfers started increasing several years before diagnosis and stabilized at a high level after." Now that is interesting. It suggests two non-exclusive, and maybe synergistic, possibilities: First is that the diagnostic process is inadequate and so is typically and substantially delayed. Second is that there is a prolonged prodromal phase, with a substantial impact.
Average time to diagnosis to Norway was somost 8 years in one pre-covid survey from the Norwegian ME/CFS. Many report an instant onset from e.g. an infection, so it seems like this is less likely (although it can’t be excluded).
With the median time being five years, so there are some pulling up that average number (me being one of them, having vague mild symptoms at the start and not diagnosed for years). Reporting an instant onset doesn't mean that the level of functioning was low enough to get disabilities at that point. It can also be "I had an infection, but never recovered and sort of pushed on until I couldn't".
Oh could be. The translation reads to me as "better" forms of rehabilitation, but it could be other forms of support. Which is a bit better. However those forms of support are far too expensive, and can't be observed to make a difference. It would take decades of rigorous monitoring to see the impact of fewer permanent disability, and no health care system has the motivation or the attention span to do this, let alone being willing to spend the resources. As we've seen, those consequences have been explicitly co-opted by governments to message that disability, which they cause with their policies, is too expensive. The very idea of disability protections is coming under attack, and would only get worse if the sums spent increased. If the proper costs were borne, instead of vaporized as externalities. Which is exactly the freaking point! But this is falling entirely on deaf ears. The fact that this is very expensive is supposed to be a motivating factor, a pressure, in dealing with it competently. This cost is supposed to act as a clear comparison between the cost of doing nothing, and trying to solve this. Where however expensive it would be to work at solving it, it's still much cheaper than doing nothing. But all governments, all health care systems and most health care professionals are fine with throwing us all in the trash and hiding the bodies. So those measures are sadly fantasy. They just won't ever happen, they are far too expensive, and the human cost just doesn't factor in those decisions. We've seen in recent years how many of them have completely abandoned even the pretense of making sense, being willing to label all of this as mental illness, then deploring how mental illness is over-diagnosed. There is simply no solution to this without solving the root problem. A problem those institutions have all refused, and continue, to even acknowledge. So even proposing better financial support, work regulations, and such, just doesn't work out.
Certainly not suggesting it is all cases, or even most. But I don't think we should rule it out at this stage. If anything, the evidence so far suggests to me that it is quite likely to happen in a significant number of cases. Which would also include some people who stay in that prodromal phase or state all their lives without progressing onto the full blown syndrome.
Could you give an example of what that would look like for a patient? I’m not sure I understand you properly.
The infection could be what pushes the person into full blown ME/CFS. Well, I had been improving enough to start university. My second year I got an infection and became bedridden for two weeks and didn't really improve back to where I was. It was around this time I got my diagnosis. With milder symptoms, just taking a bit longer to recover, being told "everyone gets tired" etc. and then suddenly not functioning it could look like it was the infection that was the trigger.
I am concerned about the government assignment based on their emphasis on the lack of evidence, that they base the assignment on the problematic and much criticized conclusions of the National Board of Health and Welfare, and that the assignment focuses on mapping knowledge governance in other countries, rather than other countries' knowledge about what care is needed. I also dislike that it is emphasized that it involves a selection of countries without defining what selection is being referred to. I discuss this further in two posts on the blog: A government assignment with a peculiar approach: Part 1: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp Part 2: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
A couple of articles about mass psychogenic illness in a Swedish newspaper today. Kjell Asplund (known from the Macchiarini scandal) is releasing a new book today, about psychological epidemics and psychogenic contagion. ME is not mentioned in the news article. I don't know if ME is mentioned in the book. The examples mentioned in the article are resignation syndrome ('sleeping beauty' illness, apathetic asylum-seeking children in the 2000s, here's another forum link too), the witch trials in Sweden in the late 1600s, the suspected phosgene gas leak at the Swedish Security Service headquarters in February 2024, the Coca Cola epidemic in Belgium in 1999, the tv-series linked school outbreak in Portugal 2006 (”mass social-media induced illness”), the Havana Syndrome 2016, the preaching disease ("predikosjukan") in Sweden in the late 1700s and 1800s, the Bua disease in Sweden in the 1980s, and the laughing epidemic in Tanzania in 1962. Psykogen smitta – när du blir sjuk av andra trots att du är frisk https://www.dn.se/insidan/psykogen-smitta-nar-du-blir-sjuk-av-andra-trots-att-du-ar-frisk/ There's also another article today, an interview with a person who was affected by the Bua disease in the 1980s: Psykogen smitta: Malin drabbades av den mystiska Buasjukan https://www.dn.se/insidan/psykogen-smitta-malin-drabbades-av-den-mystiska-buasjukan/ More info about Asplund's book here: Tankevirus: Häxbränningar, Tiktoktics och andra psykiska epidemier https://fritanke.se/bokhandel/bocker/tankevirus/ Several of the illnesses above have also been labeled "cultural illnesses" before, and mass psychogenic illness is a very similar concept. Since ME and long covid are so often discussed in the terms of "cultural illnesses", I thought it was worth sharing this on the forum even though I don't know if Asplund includes ME in his book.
There are a couple of articles on exhaustion disorder (burnout) in the news today. They do frame ME and post-covid as "cultural illnesses". Experterna oeniga när diagnos för utmattning slopas https://www.sydsvenskan.se/2025-03-26/experterna-oeniga-nar-diagnos-for-utmattning-slopas/ More about these articles in the thread on exhaustion disorder: https://www.s4me.info/threads/big-n...is-to-be-disappeared.43190/page-2#post-596595
The National Association for ME Patients (RME) has published a call to its members to report the lack of specialist care to the Health and Social Care Inspectorate, which is involved in investigating patient safety and injuries due to care. However, they do not specify what type of care RME believes ME patients need and on what grounds it should be based. This leaves the interpretation to the recipient and feels very risky given the problematic situation we are in (under influence of the Oslo network) along with the pseudoscientific national guidelines that the National Board of Health and Welfare issued in September 2024. RME:s post on Facebook: https://www.facebook.com/share/p/19QdGBJh9R/?mibextid=wwXIfr My thoughts on this: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
Be careful what you wish for, RME... You insisted on clinical guidelines, and you got them -- only they are arguably way worse than not having any guidelines at all. And still you want to keep on pushing in the same direction? Unbelievable Very very reckless Thank you so much @MittEremltage for highlighting this, it's immensely important that everybody is aware of the risks.
More than 7000 patients in Norway have been requesting for years to dismantle the National Advisory Unit on ME/CFS because of their BPS approach. In an ideal world, it should be enough to just ask for help. The patients shouldn’t have to specify what kind of help. But it’s incredibly naive of RME to act like we live in a utopia. We live in a dystopia.
I have tried to articulate what I see happening on a broader scale right now in Sweden. I'm not sure if it comes across in the translation, as much depends on the language and the words that are used. Implications. But maybe? ”It feels like we have suddenly found ourselves in the middle of some kind of normalization process around the concept of cultural illness.” Autotranslated blog: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
Well, this is a big load of bad. The irony: Being that the descriptions they are giving about social contagion are a likely good explanation... for them. They are repeating and amplifying memes, which obviously do not cause symptoms of illness, not even the perception of it, but rather distort thinking and judgment, to the point where some people engage in malfeasance with the absolute certainty that they are doing good. It's especially absurd how facts simply don't matter because memes have taken over. Or, I guess they always did rule. We have just been through a very simple process: A pandemic occurs, which ends up killing millions The illness it causes also leaves behind chronic illness and this was noted, by the sufferers (because medicine was indifferent) The growth of this illness leads to warnings about a mass disabling event The mass disabling event is easy to see in a significant increase in chronic illness and sick leave Propaganda machine goes into overdrive to cover up governments' enthusiastic role in the mass disabling event Talk about social contagion of absurd memes leading to mass illness, just a very different way than how it's being falsely portrayed. The sick are not those suffering from the memes, it's the ones who are supposed to take care of the sick, who in the process make more people even sicker. The pretense of caring is so blatantly fake. This is all very similar to a very similar obsession with some 'awakened' virus of the mind that is destroying civilization, unless we return to the days where kings ruled nations, and men ruled families, both with an iron fist. This is the same concept of "cultural illness". It also makes no sense, in fact it's blatantly delusional. How great that medical experts are just as gullible and manipulative as a reactionary countercultural revolution. It's like I'm seeing double here.
The Norwegian health minister and other government/healthcare people met with the Norwegian ME Association, ME Parents (another association), the Norwegian Covid Association and Recovery Norway on the 1st of April to talk about fatigue disorders (I know it’s an unfortunate angle but that’s how they’ve decided to do things). Auto translate: The three real patient organisations were pretty happy about how it went. Let’s hope it leads to real change. https://www.regjeringen.no/no/aktue...osx7PV0BD2hoHgpqKA_aem_iZt6t1Ud-r-zCKfGqwwt_A
