The Danish newspaper B.T. shares the story of ME sufferer Birgitte who hasn't showered since April and is missing out on her life. It also mentions that ME is defined as a functional disorder in Denmark and why this is harmful for the patient group. Towards the end the article mentions a fundraiser Birgitte is having in order to get treatment abroad, but it doesn't say anything about what kind of treatment she wants to try. B.T. Alvorlig syge Birgitte har ikke været i bad siden april: 'Mit største juleønske er at få den rette behandling' google translation: Severely ill Birgitte has not has a shower since April: 'My biggest wish for Christmas is to get the right treatment'
A Finnish news article, published today: Niko, 32, elää sängyn omana, käy vessassakin vain kolmesti viikossa: "Minut nähdään eläkeyhtiössäni täysin työkykyisenä" https://www.mtvuutiset.fi/artikkeli...n-elakeyhtiossani-taysin-tyokykyisena/8840738
Has this been shared already? I've listened to about one third of it now, and I think it's really good Norges Myalgisk Encefalopati Forening: HOLD UT - foredrag med psykologspesialist Frøydis Lilledalen https://www.youtube.com/watch?v=Yv0sAjOHaNU
Great article on increase in fatigue consultations in Norway following covid (if we ignore the lone person saying we know little about long term effects of viral infections): Alarming: Record numbers of GP consultations about fatigue (the Google translated title in the article is wrong, it's not about doctors with exhaustion though the increased numbers of sick leave in our health care system make it seem that doctors and nurses are not ok) There are also record levels of snow and very cold in the southern part of Norway, and many people have on and off lost electricity. I hope everyone who are dependent on help from others or who struggle with temperature are fine.
Not ME. For what it's worth: An essay about placebo research, Ted Kaptchuk and more, written by a medical anthropologist. Today, in the very large Swedish newspaper DN.se. Lisbeth Sachs: Inbillningens kraft tar plats i den medicinska forskningen https://www.dn.se/kultur/lisbeth-sachs-inbillningens-kraft-tar-plats-i-den-medicinska-forskningen/
By function and definition, not only is "the placebo" the least effective treatment possible, since every single approved treatment has to do better than "placebo", many treatments that don't work did better than placebo, so the placebo is even less effective than treatments that don't even work. There will never be rigorous research into this because the minute you introduce any rigor all the "effects" disappear. This is silly. When you make scientific experiments, you have to account for all other things being equal and make precise measurements about the phenomenon you are studying and nothing else. In clinical trials they almost never do precise measurements, they often don't even make measurements, and very few things are actually equal. And that's besides all the damn bias that always turns to excessive levels when it comes to biopsychosocial and evidence-based medicine trials. This is why the results are all over the place, not some magical effect that is effectively the least impactful thing ever. It's no different than "ghost hunter" TV shows where they attribute whatever happens to "maybe it's ghosts, who knows? see you for next week's episode / more research is needed". If anything, the last few decades of research has shown that it's all bunk, but the belief still remains in medicine, higher than ever. That's what's powerful: their infinite belief in magical thinking where science is not there yet. Same as it ever was. This will all go down as one of the most foolish nonsense in the history of all sciences, likely the most, far and above all the other debunked belief systems and ideologies. And it's certainly right that they are alternative medicine. Merging alternative medicine beliefs with scientific medicine will only make both worse. And because medicine is so personal, it will sow massive distrust in all experts, doing even more harm.
Actually, such considerations involving emotional and spiritual elements in healing have been around for many years. But they have been treated as less credible and belonging to so-called alternative medicine. For very good reasons.
PwME who have asked for a referral to the clinic have now started receiving replies, and are posting on social media about it. Seems like it was just empty words... Here's a auto-translated quote from a typical reply from the clinic, received by a severely ill pwME whose referral was turned down today: "Unfortunately, we are unable to accept patients with a previously established diagnosis of Postviral Fatigue/ME/CFS for follow-up or drug treatment."
oh, what a pity. This was the clinic with Dr Per Julin? I hope some noise can be made. Another blow to ME patients in Sweden
Minutes from a meeting 21 November 2023, Region Stockholm Healthcare Board (Hälso- och sjukvårdsnämnden). https://docs.netpublicator.com/api/...33553-b9c08031f1906433889-c06ff17237486280214 The relevant content starts on page 22.
When confronted with questions about why this turned out exactly as feared, even though they were fully aware of the fears/potential problems even before the decision was made (see my previous post, the one with the meeting minutes), the politicians don't seem to have any good answers at all. The politicians' main talking point seem to be the following (according to posts made by pwME on social media): "The aim of the changes made in ME/CFS care is to improve care at different levels and increase the possibilities for evaluation and development of care." I wish the patient organisation would ask the hard questions, and insist on answers. (Maybe they have, we don't know because there's no transparency at all.) For example: how will the clinic evaluate whether they have given the patients the correct diagnosis, if they only diagnose them but don't do any long-term followups at all? How exactly are they planning on accomplishing this "improved care", when they have chosen to not follow any patients over an extended period of time and to not accept patients that have been living with this diagnosis for a number of years? How can research be conducted if you only have a constant stream of new patients, that are kicked out/discharged after a short period of time? If you don't follow patients over time, how are you planning on building clinical experience/understanding of things like diseases progress, how symptoms affect function and activity, or evaluating treatments over time? How would you find out what kind of support needs the patient group has during the course of their illness and how those needs might change over time (newly diagnosed, before/after learning about pem and pacing, while fighting the system for their right to sickness benefit/social security payments, and so on) and between different severity levels? And what about long-lasting/permanent deterioration caused by extreme and/or repeated PEM, how will you ever be able to get insight into these things if you don't follow patients over time?
Not ME related, but I am finding it interesting all the same. For those following the Norwegian ME debate, Nina Kristiansen in Forskning.no has repeatedly written off any non-biopsychosocial research/news on ME, including the 2021 NICE guidelines. There is currently a debate on the emulsifier/thickener/preservative carragenan in Norwegian media, and Kristiansen have called out researchers who are worried about the potential negative effects of this compound. She cites a report by the Norwegian Food Safety institution as proof the claims of negative health effects are unfounded, and we should trust the system and the people that follow rigid criteria for systematic reviewing the science. You know, just not when it's about ME and goes against one's own views
Risk för flera år av ”hjärndimma” efter mild covid https://www.gp.se/nyheter/sverige/r...ld-covid.f60cbaf7-0ec9-432f-8626-4311a9e2bddd I haven't been able to find the new study, maybe it hasn't been published yet? Here's a couple of their previous publications: Cognitive dysfunction in post-COVID-19 condition: Mechanisms, management, and rehabilitation https://onlinelibrary.wiley.com/doi/10.1111/joim.13720 Preliminary Findings on Cognitive Dysfunction in University-Educated Patients After Mild COVID-19 Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10757160/
A visual journalist's portrait series of 8 pwME. Unfortunately the text is in image format so can't copy and paste to translate. But the pictures speak for themselves. Some of the quotes describe the limitations ME imposes but mostly they're about dreams for the future. Marie Louise starts with "I dream of daring to dream again" https://www.madsjoakim.com/pageme
World’s largest sovereign wealth fund posts record $213 billion profit, boosted by tech stocks https://www.cnbc.com/2024/01/30/wor...lth-fund-posts-record-213-billion-profit.html Spare a Kroner or two for MECFS research?
Kristian Borg, one of the researchers, was interviewed on TV yesterday. Video is available in the article linked below. Överläkaren: Mild covid kan få allvarliga effekter på hjärnan https://www.tv4.se/artikel/6je780Bn...-covid-kan-fa-allvarliga-effekter-pa-hjaernan
@MittEremltage shares her thoughts on the interview. Do click through and read the whole post Sur rant från arg tant https://mitteremitage.wordpress.com/2024/01/30/sur-rant-fran-arg-tant/
Just like the history of the Toronto SARS clinical rehabilitation lead, who despite acknowledging that none of his rehabilitation made any difference, would do it all over the same way again. They can't seem to see anything in front of them unless there is technology giving them a number with a standard range and deviation. It's either science or delusional medieval nonsense. They'll just try the same failed approach over and over again and either never notice or never care that it does nothing. And that's on top of those useless services barely serving, maybe what, 1% of the patients? At most. There is really a crisis of basic awareness of what's literally right in front of them. You can stick both their hands on the emperor's crotch and they'll still swear that they can feel the golden silk. It's incredible. And that: Is just staggering incompetence. It's truly as if nothing matters, they'll just choose whatever facts they want and run with it. No system can perform effectively like this. Even politics has to, sometimes, recognize basic truths.
Also, in the video interview Borg said that 'this is pacing' So again we are seeing this distortion and misrepresentation of established concepts/terms Call it pacing but make it GET?
