I posted an opinion piece in the long covid thread today, by a politician demanding better healthcare for people with long covid and ME. It also mentions the sad fact that Stora Sköndal's ME/CFS clinic is closing down. However, I felt this piece of information fit better in this thread: Dagens Medicin: ”Vården av långtidssjuka i covid måste säkerställas” https://www.dagensmedicin.se/opinion/debatt/varden-av-langtidssjuka-i-covid-maste-sakerstallas/ (Edited to add link to the thread about Stora Sköndal ME/CFS clinic closing down.)
Very good. Glad to see a politician speaking about this! Unfortunately I read the comment which I assume is written by a health care worker. Here's how it begins: Are these clinics really needed? I am open to new science and the fact that we do not know everything at the moment.However, I think many, mainly in primary care, share my view that me / cfs and long-term covid are in many cases seen as another loosely defined criteria diagnosis for a group of reaction patterns that have always circulated, mainly in primary care. Personally, I think that psychological and learning-based explanatory models often feel more applicable than biomedical models. Poor Swedish Long Covid patients
(I'm posting this as info, not a recommendation.) Bragée is arranging a series of educational webinars for physicians. It's free of charge and open to anyone. The first webinar in the series happened last week. A recording is available to watch on their website: Covid-19 och ME/CFS Tankar kring infektionernas roll i syndromets uppkomst ("Covid-19 and ME/CFS Thoughts about the role of infections in the onset of the syndrome") Sven Britton, infectious disease doctor According to the current schedule there will be webinars on sleep, brainfog, hypermobility, fatigue & ME & ACT, craniocervical obstructions, neurology & ME, nociplastic pain, and whether to refer chronic stress/fatigue patients to a physiotherapist or psychologist or both. The ACT for ME webinar scheduled for 14 April has the sub-heading "About psychology, energy and mitochondria - a new overall picture" and will be hosted by Dr Gunnar Olsson. Threads about some of his ACT for ME studies (gradually increased activity and talk therapy in order to overcome fear avoidance behaviours) here and here.
Yesterday the regional board of Västerbotten decided on a supplementary budget, which according to the politicians means that a specialist clinic for ME/CFS in Umeå will finally become a reality. Politician LiseLotte Olsson comments on the decision, saying "It is very gratifying that we can now finally start a specialist clinic for ME/CFS. At present, there are no clinics north of Stockholm and it is really positive to have a clinic in Västerbotten, for increased accessibility and help for patients in Norrland." Her using the word "Norrland", which refers to the northernmost half of Sweden, is kind of misleading at this point in time, since we still don't know whether the new clinic will be accepting patients from other counties than Västerbotten. Someone asked in the comments on Facebook when the clinic will open. I'd say that's a very important question, since there has been empty promises and many years of delays already... The politicians reply "We are investigating that at the moment and will get back to you as soon as we have an answer. But we are working towards it happening sooner rather than later." Personally, I'm not getting my hopes up yet. Let's wait and see what happens...
A good opinion piece today from civil engineer and ME patient Benedikte Monrad-Krohn published at forskningno, a news site about research. "ME-krigen" trenger ikke å være en krig google translation: The "ME war" doesn't have to be a war
According to replies from the politicians in the comments under the linked Facebook post: * The clinic will have a biomedical approach to ME * They hope to open the clinic "after the summer 2021", but the details are not finalised yet * They will be offering home visits to the severely ill patients * They will only be accepting patients from Västerbotten county -- not the whole of Norrland/the northern half of Sweden, as Olsson vaguely suggested earlier. The "aim and idea" is that they will be opening up to patients from other counties later on. For reference, Västerbotten has approx 270 000 inhabitants vs Norrland 1 185 000 inhabitants.
The Southern Healthcare Region (Södra sjukvårdsregionen, the four southernmost counties in Sweden) is currently working on assessing the needs and resources of ME/CFS patients. The decision was made in November 2020, and the report is expected to be published in August 2021 at the latest. Depending on their conclusions, next step could be to look into the feasibility of opening a ME/CFS specialist clinic in the area. https://sodrasjukvardsregionen.se/download/delprojekt-26-me-cfs/ There are some influential BPS proponents in the area, so let's keep our fingers crossed and hope for the best possible outcome...
You don't want to miss this brilliant opinion piece that was posted in the long covid thread today Please click through to the article to increase its traffic/stats!
Some new details in this paywalled article published yesterday: Klubbat: Klart för start av ME-mottagningen https://www.folkbladet.nu/2021-03-02/klubbat-klart-for-start-av-me-mottagningen
A wellness magazine article, a former athlete shares her personal story. Worth a read Helena har ME: "Jag var elitidrottare – nu kan jag knappt öppna en flaska" https://www.mabra.com/reportage/helena-me-symtom/7331482 Google Translate, English ("Helena has ME: 'I was an elite athlete - now I can barely open a bottle'")
A reply to this was posted today "Hvilke pasienter skal man lytte til i den polariserte ME debatten?" Google translate: "Which patients should be listened to in the polarized ME-debate?" Again it starts with the the straw-man argument that it's about those who believe the disease is purely physical in origin, and those that also believe there is a psychological component.
I wouldn't consider it a strawman argument. We're being asked to believe in a psychological cause of illness for political reasons and there's simply no good reason to believe in this idea. Since there is no magical mind-stuff that is not physical that makes diseases happen, and nobody seriously proposes this anyway, what is actually meant with psychological component is that the patients are behaving and thinking badly, in excess of what can currently be explained with biology. It's common for healthy people to misunderstand chronic illness as a sort of personality disorder because they can only see the behaviour, but not feel the symptoms. So far psychological interventions targeting the thoughts and behaviour haven't been shown to have any meaningful effect on the illness. The whole idea therefore seems to be nothing more than the ordinary misunderstanding of chronic illness that healthy people are so susceptible to. That people still cling to this idea is motivated by political reasons. I'm worried about conceding any ground to people who want us to believe in a psychological cause when there is really no good reason to. For me my illness behaves like a purely physical one, just like the flu or a tendon injury. When looking at patients as group, contrary to popular belief, the scientific evidence from prospective cohort studies has shown that things like stress and neuroticism do not predispose a person to develop ME/CFS.
No, I think these people are lying to themselves or having some transient placebo responses, which by the way are entirely consistent with a purely physical illness. A person can also experience genuine improvement of the illness for reasons that are not clear, but attribute it to their favorite intervention, which for some is psychotherapy.
ME on Swedish TV tomorrow Monday, 8 March. Björn Bragée writes in a Facebook post: I've written about Eklund and his book in this thread before, here. Here is a thread about the new study. Link to stream Malou Efter Tio online: https://www.tv4play.se/program/malou-efter-tio (I can't help noticing that dr Bragée doesn't mention the negative result of the Rituximab study...)
They have started a debate between to alternatives the premise of which is wrong. The issue isn't is it physical or psychological. The issue is for those who get lingering post-viral symptoms how many will recover without ANY intervention and how many will remain ill. For those who remain ill how well does a psychological intervention work? What matters is what is factual. No argument will ever be concluded one way or the other. And it is the province of true believers to continue on in the vein. We need facts. We need science. The psychological proponents have neither. And so they deflect, obfuscate and use ad hominem attacks when pressed.
They know it's in their interests to try to frame the debate in those terms. It makes the problems with SMILE, PACE, etc irrelevant and suddenly it just becomes a simple matter of whether or not you're open minded enough to recognise that psychological factors can affect how people feel.
I get really frustrated about the accusation towards the Norwegian ME Association, that they (and us members) are close minded, and that patients who are more open to other explanations have nowhere to go and are persecuted and not listened to.
Opinion piece by reps for three Swedish patient organisations. "Ge upprättelse åt de som missbedömts och försummats i sjukvården" https://www.altinget.se/artikel/ge-upprattelse-aat-de-som-missbedomts-och-forsummats-i-sjukvaarden ETA: https://twitter.com/user/status/1368840356775813120
