Tjenesten og MEg's contribution to an open day for educational purposes have been uploaded to youtube (in Norwegian)
They talk about the experience of patients with the healthcare system, such as being denied care or being forced to undergo potentially harmful treatments, and how the debate...
Another reply to LL's opinion piece on forskning.no, this time from Sigmund Olafsen:
Hva må vi gjøre med forskningen på ME?
What do we need to do with research on ME?
Quote:
"Publication of the guidelines has been postponed several times to ensure that there were no compelling arguments...
My sister sent it to me as it was also posted in a Norwegian newspaper. I'd be happy if GP's had more knowledge about diet (it *is* possible to consume the required 400mg of folate through diet alone, though just saying "healthy diet" is not specific enough. In a recent European survey the...
Aftenposten continue their ME-debate on the new NICE guidelines, this time with an opinion piece from Recovery Norway with the usual babble about activism, recovered patients not being listened to, misinterpretations of the evidence, it is dangerous to take away hope etc...
Ikke ta fra ME syke...
I wonder how this will play out in the long run, I have seen a researcher say that subjects fail lifestyle interventions, they feel guilty and this can fuel ill health (this was a lifestyle intervention for depression, where the goal was to lose weight). So maybe we shouldn't provide these...
I'm glad they mentioned the problems with previous research linking TMAO to cardiovascular disease. This link often comes up in studies of diet and TMAO, as TMAO increases after meat intake, and it makes a neat story that supports the "red meat is bad" argument. However, as mentioned here, fish...
Well... Therapy is the first line treatment in Norway on paper, in practice this is not the case (and then you have the waiting lists which can be over a year, in some areas patients have to write motivational letters to potential psychologists and the list goes on and on about how hard it can...
Live Landmark has an opinion piece at forskning.no, again arguing that the new guidelines are not fit for purpose and should be ignored, and throwing in some patient bashing for good measure... she even cites the PACE trial to prove her point that pacing has no evidence base.
Den britiske...
Posts on the new petition to "Set up a national harms reporting scheme for non-pharmacological treatments" has been moved to the new thread United Kingdom: Petition: Set up a national harms reporting scheme for non-pharmacological treatments.
Tronstad has also written on the new guideline (or, a bit more about what might be going on in pwME cells with the guideline as a backdrop):
Hva er årsaken til at trening gjør ME-pasienter sykere?
What is the reason why exercise makes ME patients sicker?
On GET:
"The goal of the GET method is...
Three threads on the topic of long covid after breakthrough infection have been merged, and two additional post from the thread Possibility of ME or PVFS after COVID-19, Long Covid have been moved here.
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