I have a notion that I keep seeing this statement from a variety of outside sources (people with no previous association to ME). Where are they getting this idea from I wonder? I'm glad this author made a point of correcting that misinformation. It would seem to need rather more wide circulation. A talking point for anyone in advocacy facing the media.
I would, but afraid it would violate copyright and forum rules to post the full text, sorry... The link above does grant free access, although with the hassle of having to create an account. It's a troubling idea indeed. In this particular case, I think it can be put down to the Minister simply not having a clue -- he came across as helplessly unprepared at the open consultation. The matter of relations between ME and Long Covid was also not in his talking points (since released publicly) so he would have been speaking from his own, very limited understanding.
Has anybody even seen anything lately from Greenhalgh? Hard to say being blocked but she seemed to have completely lost interest with Long Covid now that it's hard to argue the huge overlap with ME. Haven't seen her name mentioned on anything in months. I can't imagine what Henrik will be talking about there. Total mystery. https://twitter.com/user/status/1403331044737261573
Mic Drop – support gala for ME (stream) in Sweden June 18, 7-9pm local time. https://www.presensimpro.se/produkt/mic-drop-stodgala-for-me-stream/
Paywalled editorial: Isobel Hadley-Kamptz: Vården som i dag ges till ME-sjuka är ovärdig ett modernt land https://www.dt.se/logga-in/isobel-h...ges-till-me-sjuka-ar-ovardig-ett-modernt-land
Someone requested the follow-up document from the post room, and shared it with me. There's nothing about contract negotiations or anything like that. There's just the 2020 numbers, for example: how much money the clinic has received from Region Stockholm, number of patients (1647), patients from other regions (34%) visits per patient (11), adverse events (16), employees/professional roles (7 specialist doctors, 5 nurses, 2 physios etc), referrals received (1252), referrals accepted (901), waiting time from referral to first visit (70), discharged patients (316).
(Not specifically about ME but still 100% relevant, for obvious reasons.) Very important opinon piece by journalist Agnes Arpi, about how shifting accountability from the individual healthcare professional to the organisation has eroded patients' legal rights when it comes to reporting harms, abuse, discrimination etc. I have a lot of experience with this myself, and it's just as bad as it sounds I vården ansvarsutkrävs bara ”systemet”, aldrig individer https://www.altinget.se/vard/artikel/i-vaarden-ansvarsutkravs-bara-systemet-aldrig-individer
This is about mental health care in Norway, but their story about the undocumented treatment "Basal exposure therapy" and how it's been hyped based on one (!) badly designed study sounde familiar. Takes up some points we are familiar with: Bad study design, hype and patient harm. Could have been written about LP and ME/CFS. Patients with mental disorders are offered undocumented treatment. That is unacceptable.
Yes, this could have been written about LP and ME as well! Thanks for sharing! I like their conclusion and think it could be good to keep in mind when discussing LP. I see some people claim that LP might be useful for people with psychological illnesses in comparison to people with ME. This makes me a bit frustrated because of course psychological illnesses should be offered documented treatments just like everyone else.
Agreed 100%. I feel people sometimes become forced to say it so they don't seem too "set against" LP, saying it's pure BS and not good for anything and we get the false accusations about not understanding psychology.
A month ago some Norwegian scientists claimed they had found the biological explanation for chronic fatigue, and that this proves fatigue is not about being lazy. I'm quite sure we discussed it on the forum, but I can't find the thread.. Anyway, it was not in connection with any recently published papers, but it still received a lot of attention in the media here. ME was not included among the fatigue illnesses they had studied. Today Henrik Vogt is criticising the researchers in the media, saying they are adding to the stigma surrounding fatigue by claiming it's physiological. The article refers to SUS, which is the name of the hospital where the fatigue researchers work. Quotes: That one can measure this says nothing in itself about the cause, and does not mean that mental processes are unimportant, he says. The attitude he means to trace at SUS, he says, is widespread. In his archive he has several newspaper clippings from home and abroad with headlines such as " Fibromyalgia a 'Real Disease,' Study Shows " and " First biological proof that ME is real found by scientists ". ... - In the worst case, this way of arguing can contribute to more stigma. What about everyone who has a condition where one does not find anything in the body? Are they lazy, or are they just imagining things, Vogt asks rhetorically. NRK: SUS får kritikk for måten dei presenterte forsking google translation: SUS is criticised for the way they presented research
I think this thread is related to the claim - Stavenger University - heat shock proteins and hypocretin Interleukin-1beta, heat shock protein 90alpha, and hypocretin-1 in chronic fatigue (not CFS) (PhD thesis), 2020, Bardsen
Bragée ME-center hosted a webinar (in Swedish) on the neurology of ME/CFS on 26 May, with neurologists Helena Huhmar and Soinne Lauri. (I haven't watched it. Sharing only as info, not a recommendation.) Code: https://player.vimeo.com/video/555258749
No new info, no. But I've seen a few comments lately on social media, people saying they have been invited to "planning appointments" (in person, no videocalls), so maybe something has changed, or is about to? I don't know.
Hur kan samhället stänga alla dörrar för min sjuka dotter? https://hejaolika.se/artikel/hur-kan-samhallet-stanga-alla-dorrar/amp/ Google Translate, English ("How can society close all the doors for my sick daughter?")
This is a great line, it really captures how everything is whitewashed since they either got approval to cheat or were arbitrarily cleared of even "zero tolerance" faults. Legal abuse of statutory authority or misconduct is first and foremost legal, everything after that becomes irrelevant if those in charge are OK with arbitrary exemptions for things they like. Everything is allowed because it's "not medical", but it's considered not medical exactly because everything is allowed, circular failure. But it is not society that has closed this wall, it's medicine, sovereign in its domain and ignoring everyone and everything in the process. It needs to be blamed, it's the only way for the lesson to stick and stop the cycle.
