I just wanted to add that it's not just the media that is ignoring ME and PEM. I've been seeing some worrying comments on social media as well, by patients at the Swedish long covid clinics. For example, one of the main clinics that accepts pwPOTS (the cardio vascular centre at Karolinska Sjukhuset) has recently gotten a new physician, and this person "doesn't believe in" PEM. Many POTS patients (many of them have ME or long covid as well) have reportedly had their medications/prescriptions discontinued without comment or follow-up. I don't have any public/official sources to link, but I feel it's important to mention it anyway. I feel it's part of a bigger pattern/trend, and I don't like it.
A well known influencer in Norway who has ME and who was previously on 100% disability pay, is going to take part in the reality show "16 weeks of hell". Which is 16 weeks of low energy intake and heavy workouts. I don't follow her, but as far as I know she has not said she is recovered just that she is able to work as an influencer since she can plan around her illness. I'm wondering how this will go... for her and not least am I worried about the potential backlash for other patients if she is able to complete the 16 weeks (being an influencer we would hopefully be able to see if she actually managed or not). I'm glad the influencer is feeling better and strong enough to try this type of thing, and she is donating some % of her income to the team at Haukeland (Fluge, Mella, Tronstad) but... I'm very conflicted on how this will play out both for her health and for the general view of pwME.
Swedish news segment today (audio, 2 minutes): Fler drabbas av autoimmuna sjukdomar efter covid-19 https://sverigesradio.se/artikel/fler-drabbas-av-autoimmuna-sjukdomar-efter-covid-19
Vetenskapsradion Hälsa: Det här vet forskarna om långtidscovid just nu https://sverigesradio.se/avsnitt/vetenskapsradion-halsa Sympathetic and informative news segment/podcast episode. They are talking about long covid research, an ongoing Swedish Paxlovid study among other things. 124 participants have been recruited so far, they need 100 more. Results are expected this autumn. It's half-blinded, they have controls for Paxlovid, but everybody is getting Ritonavir. Primary outcome is a quality of life questionnaire, they need to improve "10 units" in order for it to be considered effective. Dr Lisa Norén from the Swedish Covid Association, who is also a participant in the study, describes getting PEM symptoms (without mentioning PEM) after doing the 6-minutes walking test. Judith Bruchfeld and Artur Fedorowski are interviewed too. Fedorowski talks a little bit about POTS and they mention a few hypoteses of what might be causing POTS in pwLC: inflammation in the autonomic nervous system or the peripheral nervous system, which causes the blood vessels to lose their tightness anti-bodies are blocking receptors in the heart and the blood vessels from reading signalling substances correctly the vagus nerve might be affected, there might be a brain inflammation/in the central nervous system, which sends incorrect signals to the heart and the blood vessels Fedorowski briefly mentions potentially treating this by trying to calm the immune system down. There's also a short comment from the National Board of Health and Welfare, who are currently working on a guideline for post covid "and other post-infectious conditions" which they believe will increase the knowledge about these diagnoses among healthcare professionals in primary care. Expected publication is middle of August 2024. They also stated, in their written comment to the journalist, that it's "difficult to say whether the current knowledge about long covid is sufficient or not"... Norén disagrees, says it's clearly insufficient. They also mention a guesstimate based on international data, 1 in 30 people or 3-5% of the population might be suffering from long covid presently. Which would add up to 300 000-500 000 persons in Sweden. The official number of people who have gotten specialist care for long covid in Sweden is 11 500, while 30 000 have received the diagnosis long covid in primary care. This would mean that 90% of pwLC in Sweden are undiagnosed and have not gotten any medical care.. Bruchfeld also emphasises that in order to be able to do proper research on this group of patients, there has to be somewhere to gather them (specialist centers), which is not possible when the politicians are closing down specialist clinics and sending people to primary care centers instead. I believe the study they are talking about is imPROving Quality of LIFe In the Long COVID Patient (PROLIFIC)? https://clinicaltrials.gov/study/NCT05823896 Forum thread for PROLIFIC here: https://www.s4me.info/threads/swede...vid-patient-prolific-2023-brodin-et-al.33604/ ME is not mentioned, as usual. (Sorry about my low-quality notes, PEM...)
Juristen: Försäkringskassan fortsätter neka sjukpenning för utmattning https://arbetet.se/2024/03/14/trots...n-fortsatter-neka-sjukpenning-for-utmattning/ Google Translate, English ME/CFS is mentioned.
News segment on a Swedish breakfast TV news show, 26 March. Glädjande beskedet: Studie ger hopp om botemedel mot postcovid , 9 min 10 sek https://www.tv4play.se/klipp/cbee04...et-studie-ger-hopp-om-botemedel-mot-postcovid They showed a few photos from the Swedish Covid Awareness Month social media posts (the Millions Missing rip-off campaign), very moving. Sundberg talked about the fact that people are still falling ill and some are still getting worse, the pandemic is still ongoing. She also said that it's not true that only a few people are affected. She also mentioned that it's still difficult to be believed and respected by the healthcare system, and it might even be more difficult nowadays than it was earlier Currently only 4 out of 21 regions have long covid clinics, because the others have been closed down. The study they are talking about is the Paxlovid one, led by Bruchfelt and Petter Brodin at Karolinska Institutet. Bruchfeld says they are giving them the antiviral Paxlovid for 15 days. It's a controlled study. 130 participants have been included so far, people who are severely affected but they haven't been able to include anyone who is too sick to attend appointments at the clinic (so no bedbound people). They hope they can end the study this autumn. There's a 90 day follow-up. They are hoping that Paxlovid will help the patients get rid of the virus, if there is still covid-19 virus left in the body. Bruchfeld says she believes it can maybe help a sub group, but she doesn't believe this is a "one size fits all" cure. She says it's likely that other mechanisms will need other medications. They are still working on finding out what other mechanisms might be involved, besides virus. How the autonomic nervous system is affected, and how the innermost layers of the blood vessels are affected. And the cognition is majorly affected too, for example the memory function, the working memory and the executive function. They need to learn much more about what is going on, on the molecular level. ME is not mentioned, as usual. Bruchfeld said that four years ago we didn't know this would happen, but there was reason to believe it because of how the disease was manifesting itself during the acute phase.
Hanna har fått livet tillbaka https://www.junia.se/livsstil/upptacklivet/hanna-har-fatt-livet-tillbaka/ And a paywalled article about the same person: ”När jag var som sämst kunde jag inte ens kommunicera, bara viska något ord” https://www.dagen.se/livsstil/2024/...ag-inte-ens-kommunicera-bara-viska-nagot-ord/
Not fundamentally different than the brain retraining or phone call epiphany people. The most annoying part of this is that I occasionally see similar spontaneous recovery reports on the LC sub-reddit. This tells us something. However unlike the religious awakening story here, most of them report nothing special, it just happened, a sudden change. That we can't study those cases is maddening, because it's not done simply because there is nothing organized for things like that, no resources invested in it. But it does tell us that there is a shift that can occur that tips people from ill to recovery, not fundamentally different than how people recover from acute illness, from other prolonged illnesses like pneumonia, or concussions. There is a biological process underneath it, maybe more than one. Same thing with gradual recoveries. The vast majority report that it's simply rest and time. Some people will swear by this or that, especially the brain retraining people since evangelizing about it is part of the business model, but for at least 90% it's just time and an unseen biological change where recovery leads to more functioning, rather than the traditional psychosomatic explanations that take what happens after as its own cause.
It really is. There is so much we could be finding out, right now, if the official attitude didn't boil down to "go away, calm down and wait for it to blow over".
Paywalled article in a local Swedish newspaper: Småbarnspappa Henrik var utdömd av svensk sjukvård - men blev frisk av tysk behandling https://www.smp.se/familj/smabarnsp...k-sjukvard-men-blev-frisk-av-tysk-behandling/
The Amelie Clinic (Ameliekliniken, Jonas Axelsson) is closing down. The Amelie Clinic hasn't posted the news on their website yet, but an open letter has been posted in a private Facebook group for patients of the clinic. The news has also been made public by others. They are apparently closing because of financial reasons. Interestingly, there's no mention of the reviews by the Ethics Review Appeals Board (Överklagandenämnden för etikprövning, ÖNEP) or the Health and Social Care Inspectorate (IVO). The letter's main message is: (I'll post the whole letter later if I can find a public version.) Do check out @MittEremltage's blog and podcast Maran for more background information. Forum thread here: https://www.s4me.info/threads/5-mil...d-foundation-for-research-on-me-sweden.37595/
RME Stockholm has posted a comment on their Facebook page: Intrestingly they too choose to not mention any of the reviews and investigations, nor the research done without ethical approval etc. No mention of patient safety issues or the importance of informed consent from patients taking part in research projects etc.
The term used is "hjernetåke". Edit: I missed you asked for both a colloquial and formal term. "Hjernetåke" is used for both, and similar to in English there is discussion around how it may make the symptom sound more benign than it is, that it should be scrapped and that maybe something like "kognitiv svikt"/"cognitive impairment" (or other terms) should be used instead.
A news segment on a Swedish morning TV show: Nyhetsmorgon: Så drabbar postcovid barn och unga – ”Som att ha ett mobbat barn”, 10 min 1 sek https://www.tv4play.se/klipp/fc6691...ovid-barn-och-unga-som-att-ha-ett-mobbat-barn ETA: Sympathetic and informative. Estimated number of children and young people affected is 10 000, but only 600 have been diagnosed as of yet. Severity is mentioned, some are homebound for years, unable to take a shower more often than once a week, etc. Dysautonomia is also highlighted (different kinds of typical symptoms). Important to listen to the children, what they are saying. Check their pulse. What happens when they exert themselves? Some get worse after exercise/PE at school, sometimes a couple of days later. The mention of bullying in the title refers to the isolation that homebound children experience. As always, ME is not mentioned. PEM is not mentioned.
Swedish news article in a local online newspaper: ME-patienter i limbo när vårdvalet slopades https://www.mitti.se/nyheter/mepatienter-i-limbo-nar-vardvalet-slopades-6.26.216820.51b74b2116 The specialist clinic that chose to close prematurely was Bragée ME Center, as most of you already know. Instead, they opened a private primary care clinic in Östermalm (described by Wikipedia as "an extremely expensive area, having the highest housing prices in Sweden.", known for "luxury, glamour, and affluence".)
News segment (1 min 30 sec) on Swedish radio, about the new ME specialist clinic in Gothenburg. ME-patienter har väntat på vård – nu öppnar regionens nya mottagning https://sverigesradio.se/artikel/me-patienter-har-vantat-pa-vard-nu-oppnar-regionens-nya-mottagning
But now a new specialised clinic will open to receive patients who need a diagnosis and rehabilitation. Meet the new clinic. Same as the old clinic.
LO-TCO Rättskydd AB: Kammarrätten gav person med ME/CFS (kroniskt trötthetstillstånd) rätt till sjukpenning https://www.fackjuridik.se/kammarra...skt-trotthetstillstand-ratt-till-sjukpenning/
