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?
Opinion piece by Sven Britton (member of the Swedish ME association RME's scientific advisory board) in the journal of the Swedish Medical Association: ME/CFS-patienter överges när Bragéekliniken läggs ned https://lakartidningen.se/opinion/d...tienter-overges-nar-brageekliniken-laggs-ned/
The Swedish Covid Association has published a map on their website, with information about all the post covid clinics in Sweden. "The Swedish Covid Association has carried out a survey of the post-covid clinics in Sweden. At the time of the data collection (January 2024), four of the country's 21 regions had some form of post-covid clinic." Karta över mottagningar https://covidforeningen.se/vard-och-stod/karta-over-postcovidmottagningar/
The Swedish Covid Association has sent a letter to the Ministry of Social Affairs regarding the situation of post-infectious conditions in Sweden, with a number of very important questions. (ME and PEM is mentioned.) Våra frågor till regeringen https://covidforeningen.se/vara-fragor-till-regeringen/ Google Translate, English
There was a terrible article about euthanasia and ME in Dagbladet the other day, with Vogt talking about it being grostesque and happening because people losing hope when recovery stories are not told (and then referring to the importance of Recovery Norway). Story ends with Fors from NTNU (involved with the lightning process study) talking about their research that (supposedly) show mild and moderate patients can recover with CBT. Both ignore that the patient case they discussed was (very) severe (Dutch) so even IF the studies they refer to actually showed recovery, it has nothing to do with a severe case.
That's really sickening that they use other people's tragedy to advertise quackery. I hope they get lots of complaints.
I agree. Her life and suffering was not to be reduced to a rhetorical point for Vogt to use. The newspaper shared the article on Facebook. Critical and factual comments from ME sufferers have now been hidden by the newspaper so that the comments are not visible for others than facebook friends. It's so surreal..
Erased in life. And erased again in death. By the same people. Grotesque is the right word. There are others. I wonder what goes in the mind of the editors who hide the comments. This is such a sickening failure of journalism, it simply has no justification and probably runs afoul of journalistic regulations, but it's usually the case that when it comes to us, these things simply don't matter. There is probably some authority where a complain could be lodged and would be accepted, make them backtrack, but it would be too late at this point. The lie will have made several turns around the world by the time truth put a single foot on the ground. Truly sickening.
Oh the amounts of lives we could save if more people were willing to stand on a circle and yell NO! to their disease.
Swedish Radio: Studio Ett 19 februari https://sverigesradio.se/avsnitt/studio-ett-19-februari On today's episode they are talking about, among many other things, ME patients being moved from specialist care to primary care. The episode is available to listen to on their website.
More on Swedish radio yesterday (2 minutes, in Swedish) Specialistklinik stängde – patienter blir utan medicin https://sverigesradio.se/artikel/specialistklinik-stangde-patienter-blir-utan-medicin ETA: She has been diagnosed with ME after covid-19.
@MittEremltage comments on this in her latest blog post. Well worth a read, as always Sveriges Radio missar den avgörande frågan https://mitteremitage.wordpress.com/2024/02/20/sveriges-radio-missar-den-avgorande-fragan/ Google Translate, English
LP coach Live Landmark had an opinion piece last week about a so-called ME epidemic in Norway and how Denmark and Sweden are much better at handling ME. Denmark with not using the diagnose, and Sweden by shutting down ME clinics. (google translated link here). Just a few years ago, this opinion piece would have been celebrated, liked and shared by many. This time it received little attention and mostly factual, critical comments on social media, so I didn't think it worth sharing here as it fell flat to the grown. However, three doctors are today coming to Landmark's rescue by confirming her argumentation; the paediatrician and researcher Maria Pedersen, leader of the national competence center for ME/CFS Ingrid Helland (colleagues of Wyller) and research director of the Norwegian Institute for Public Health, Signe Flottorp: Tar et oppgjør med ME-holdninger: - Noen blir provoserte når de hører de kan bli friske google translation: Dealing with ME attitudes: - Some people are provoked when they hear they can get well quotes: - Of the several hundred children and young people I have visited, there are only a few who have not improved in the time I have followed them. The vast majority have become significantly healthier and many have become completely healthy, says Helland. ... The two see a clear improvement in children and young people who receive organized activity. Preferably very low activity at the start, with a gradual increase over time. ... - We have regularly admitted children and young people with inflammation of the brain and spinal cord at Rikshospitalet. These patients need a completely different treatment than the CFS/ME patients. It can also be seen as frightening to receive a diagnosis that suggests that this is what you have, explains Pedersen- In Denmark, the new ICD-11 diagnosis "bodily distress syndrome" is frequently used, instead of CFS / ME. - The name itself can point to an illness that is caused by too much stress over a long period of time. This perhaps makes it easier for patients to understand treatment and measures that can help one recover. Then it's a very different message to get, says Pedersen. ... In 2023, 50 researchers and doctors from six different countries signed what is called the "Oslo Declaration". They were critical of the use of diagnoses such as ME, chronic covid, fatigue and burnout. The symptoms overlap, and you can recover from it , they thought.
Finding it ironic that the journalist behind an article in Khrono on people who go after research fraud today is the same guy that keep writing sympathetic articles about BPS researchers and anti-scientific pwME.
Richard Horton, most famous for being the guy who published one of the worst cases of research fraud, has said that in his opinion half of all scientific papers are wrong. Not in his journal. Nope, not him, as editor-in-chief famous for one of the most harmful examples of that in history. Not despite being one of the guy most known for it, because for some reason his role in the entire affair is brushed over and all the blame is on the discredited researcher. Some people walk around with poop on their shoes and rant about how everything everywhere smells like shit.
What do you all think about the Swedish Covid Association's content for Long Covid Awareness Day, 15 March 2024? https://covidforeningen.se/uppmarksamma-long-covid-awareness-day-2024/ Does it remind you of something? ('Vem saknas?' = 'Who is missing?') ME is not mentioned.
News segment on Swedish radio (1 min 40 secs): FHM-rapport tar inte upp hur barn påverkats av covid https://sverigesradio.se/artikel/fhm-rapport-tar-inte-upp-hur-barn-paverkats-av-covid?s=03
