There will be an open hearing on ME/CFS and infection triggered fatigue syndrome in the Swedish Riksdag on 27 May, hosted by the Social Affairs Committee. It will be available to watch online. The Riksdag is the highest decision-making assembly in Sweden, it's "the parliament". https://www.riksdagen.se/sv/webb-tv...agning-om-sjukdomen-mecfs-och_H8C220210527ou1 I'd be interested in knowing how they chose the speakers... Björn Eklund is the (former?) ME patient who wrote a book about his recovery from ME, apparently thanks to Rituximab (Kolibri, Norway) and other off-label treatments such as antivirals (Red Clinic/Ameliekliniken, Jonas Axelsson). Kerstin Heiling from RME is an obvious choice, of course. I hope she will be honest about the problems pwME in Sweden are facing, and not try to gloss things over to make things sound "hopeful, optimistic and positive". I hope she will keep a very firm biomedical focus during this talk, not focus on how important she believes psychosocial support etc is (she's a retired psychologist, does not have ME herself). I hope she will include the severely ill and the very severely ill in all aspects of her talk. Jonas Axelsson. Hmm... Head of a private ME + long covid clinic. As you already know, he recently had to pause/cancel? one of his research studies because he hadn't gotten ethical approval before starting to collect samples etc. He's known for generously offering lots of different off-label treatments and medications to pwME and pwLC, as well as recommending brain retraining programs (which has made Gupta, DNRS rewire etc popular in some subgroups of the patient communities, which in my opinion is hugely problematic on so many levels). Axelsson claims that the treatments he offers are completely individual, based on each person's illness history, symptoms, tests etc. However, judging by what people share on social media, it seems to me like they are all getting pretty much the same stuff... For what it's worth, I believe he genuinely means well. Björn Bragée. Hmm... What will his talk be about? Per Julin and Anders Rosén. No worries there, I'm looking forward to listening to their talks Anna-Lena Hogerud from Region Skåne. I don't know anyhing about her, but as you perhaps remember from our discussions about Region Skåne's new clinical guidelines for ME/CFS, the BPS view has been very strong in Skåne historically. What will her talk be about? This hearing could go either way,... I'll be keeping my fingers crossed hoping for the best. (Edited to add the link, sorry!) This is discussed further here: Sweden: Open hearing on ME/CFS in the Riksdag 27 May 2021
A recent judgment by the Swedish Court of Appeal (Kammarrätten) shows how incredibly difficult it can be for people with ME to get disability pension. https://www.processratt.se/kammarratten-kvinna-med-me-beviljas-sjukersattning/ Google Translate, English
Sweden. Did you know that you can contact the 112 emergency number through text messages/sms? You have to register first, though. In Swedish here: https://www.sosalarm.se/trygghet/viktiga-telefonnummer/112/112-for-tal--och-horselskadade/
There's a number of news articles today about Mia Skäringer and her autobiography that was published a few days ago. She's a famous Swedish comedian, podcaster, actor, radio presenter, script writer etc. Skäringer: "Jag vill låta sorgen värka ut" https://www.gp.se/kultur/kultur-nöje/skäringer-jag-vill-låta-sorgen-värka-ut-1.47822217 Google Translate, English I find it a bit confusing that she says she's been diagnosed with ME, but keeps talking about burnout? Burnout, or exhaustion disorder ("utmattningssyndrom", previously "utmattningsdepression"), ie work-related stress/exhaustion, is a different diagnosis in Sweden. Same article published here as well: Skäringer: "Jag vill låta sorgen värka ut" https://www.aftonbladet.se/nojesbladet/a/dly4nz/skaringer-jag-vill-lata-sorgen-varka-ut Skäringer: ”Jag vill låta sorgen värka ut” https://www.hd.se/2021-05-21/mia-skaringer-talar-ut-i-nya-sjalvbiografin
Radio interview (5.27 min), in Swedish: 28-årige Elias drabbades av ME: "De flesta lider i tysthet" https://sverigesradio.se/artikel/28-arige-elias-drabbades-av-me-de-flesta-lider-i-tysthet
In the Swedish newspaper Aftonbladet today: Elias, 27, fick ME-diagnos efter covid-19 https://www.aftonbladet.se/nyheter/a/PRMkd5/elias-27-fick-me-diagnos-efter-covid-19 Google Translate, English
Wasn't sure where to put this, but we have had a number of posts on the forum about what "recovery" means. Some Norwegian academic wrote about it today: Hva betyr det å bli bra etter helseproblemer? What does it mean to recover after being ill?
That Norwegian academic should try talking to patients because of course it means back to pre-illness health, especially when medicine keeps insisting there is nothing wrong with us so how can that argument be made seriously? They don't even believe the things they say because all they do is argue in promotion of their conclusions, the words they use don't even matter. This is the exact opposite of how science works. They are not following the evidence, they manufacture whatever they fancy, putting words into other people's mouths. Ridiculous. No one gets to arbitrarily decide for others like this, medicine is showing being especially inept at it and the implications of this are a serious problem.
The Norwegian ME Association has today officially asked the Norwegian Directorate of Health to update their national guidelines for CFS/ME. Google translated quote: We justify the need for a revision on the basis of three factors: 1) A significant change in the research environment which has laid the foundation for the health authorities in particular the USA and the UK to radically re-evaluate their diagnostic criteria and treatment advice; 2) the current supervisor is inconsistent in the use of diagnostic criteria and thus in the definition of relevant research; 3) the current supervisor is perceived as unclear in several areas. https://www.me-foreningen.no/2021/05/26/norges-me-foreningen-ber-om-revidert-veileder/
Specialist in psychology, couple's counsellor and chronically ill Frøydis Lilledalen has an opinion piece in the Norwegian newspaper for medical news Dagens Medisin where she challenges some medical dogmas. Våger vi å utfordre etablerte sannheter? google translation: Do we dare to challenge established truths? quote: People with myalgic encephalopathy (ME) experience exacerbation of disease with activity outside the tolerable limit. For patients who do not reflect the general consensus on the undisputed health effect of the activity, there are two options. One can stop believing in the theses as the only conclusion, or one can stop believing in the patient. As a society and therapist, it is easy to choose the latter, and demanding to choose the former.
That's most of the problem, isn't it? It really is that easy to not only criminally neglect millions of sick people into amplified suffering, but to never even have to face it, to be able to dismiss all evidence of failure, millions of reports of harm and massive economic and moral consequences. That's the part that's clearly broken. Not only shouldn't it be easy, it should be completely impossible. But it's basically considered completely normal that it's easy to do that, nothing anyone can do about it. It's just the way of life, handed down from the heavens and imposed on us, on a medical profession that wants to help but is forbidden to do anything about it. The way kings and emperors used to rule us all, their power divine and the simple natural order of society. Except, no, this is entirely a choice, imposed by nothing and no one, an easy one, the past of least resistance is to ruin the lives of people whose health has been ruined by illness. And frankly that's one of the most broken things ever. Not just the fact that it continues to happen, but that it really is easy to do it, there is no real opposition, barely anyone in the ranks of the profession is bothered by it, it's just so much easier to keep at it because only the victims object and the victims have been so fully dehumanized that it's a bland statement of fact that it is genuinely easy for the medical profession to simply not care at all, to the point of actively obstructing any help, which is especially easy when those doing the obstruction are the same who are technically legally obligated to help.
Hästar var landslagsryttarens liv – nu orkar hon bara minuter i stallet https://www.mitti.se/nyheter/hastar...nuter-i-stallet/repudw!iefYibT0BbVhNQ@bc4Dww/ Google Translate, English
Paywalled article in a local Swedish newspaper: ”Jag satt och grät i duschen varje kväll” https://kuriren.nu/bli-prenumerant/artikel/rx11e8vl
An open letter by a pwME to the director general of the Swedish Social Insurance Agency. It's very, very angry and very true Ett brev till en generaldirektör https://mitteremitage.wordpress.com/2021/05/19/ett-brev-till-en-generaldirektor/ Google Translate, English
A really important blog post on the SF-36 and the dangers of confusing functional ability with quality of life, written by a severely ill pwME. En syn på livskvalitet som bäddar för barmhärtighetsmord https://mitteremitage.wordpress.com...vskvalitet-som-baddar-for-barmhartighetsmord/ Google Translate, English
This article was published in NSD too, and they have now opened it up (no longer behind paywall) ”Jag satt och grät i duschen varje kväll” https://nsd.se/nyheter/artikel/rx11e8vl
The Kavli Trust has an English version of their annual report from 2020. On page 45 they write about the research projects into ME they've supported with statements from professors Fluge and Mella. Kavli Trust has supported their research with 28.5 million NOK since 2011. That's 2 807 854 EUR, 3 421 943 USD, 2 413 495 GBP Quote: “We are very grateful that Kavli Trust wants to support research on ME/CFS. This research is in an exciting phase, and we believe that the next few years will bring increasing insight into the causes and development of the disease,” says Olav Mella. https://cdn.innocode.digital/kavlifondet/uploads/2021/06/Kavli-Trust-Annual-Report-2020-2-1.pdf
A month ago I started seeing reports on social media by pwME, saying that Bragée ME-center are no longer offering video calls or home visits, aren't booking any new appointments, aren't answering the phone, aren't accepting new patients (referrals are rejected or put on indefinite hold?), and so on. What is going on? I haven't been able to find any info about this on bragee.se, nor on Bragée's Facebook pages. I checked the official Stockholm Region post room ("diarium"), and there's an entry from 3 weeks ago about a followup regarding the contract between the region and Bragée Rehab. I don't know if this is related or not. @Bjorn Bragee, would you like to comment on this?
A much anticipated op-ed by some of the leading ME clinicians and researchers in Denmark has been published in the Politiken daily newspaper: https://politiken.dk/debat/kroniken...senfølger-af-covid-19?shareToken=44seCYAAfMHg It's paywalled but the above 'gift link' (kindly shared by a fellow patient) allows access to anyone with a profile at Politiken, which is free to create. Obviously most relevant to Danish readers although I imagine Google Translate would do a decent job. The authors are well known and highly regarded in the patient community -- Jesper Mehlsen, the go-to private practitioner for ME patients in Denmark, Rikke Olsen, a researcher on mitochondrial dysfunction, and Peter La Cour, a psychologist currently also at Mehlsen's clinic. In brief summary, the piece lays out the links between Long Covid and ME, explaining the basic pathologies, and makes the case for increased research and funding in these and related conditions. It's very to the point and, I think cleverly, steers clear of a directly confrontational stance to the functional disorder paradigm and its proponents, while still lamenting the negligence of ME research and treatment in Denmark -- and making the case for increased interest in the field. The authors touch on the highly problematic diagnostic practice, which encourages the use of non-specific 'functional' labels. They also refer directly to a couple of statements by the Minister of Health at the recent open consultation in parliament on ME, including the ill-informed claim that Long Covid and ME differ in that the former entails a viral trigger, but also the (rather non-committal but still positive) intention by the Minister to increase funding for ME research. It's great to see a piece like this in mainstream media. It complements very well the last few years' opinion pieces by patients and lays out the situation in much more solid, well-written terms than any journalists at national outlets have bothered with so far. I imagine it will be hard for people at the Health Authority as well the Ministry of Health to ignore. Hooray for allies like this!
