Norway: ME Forening (ME Association)

On the plus side, sunlight will turn them to stone.

 

It is really bad. On a somewhat more philosophical level, it is devastating that the government with things like this and the tiny efforts is very close to kill patients hope to. Hope may not be precise, but it's a strong ongoing factor for people, in many ways the only thing to hold on to. The way the institute and other responsible entities clearly demonstrate incompetence and unwillingness to do anything substantial while people literally are dying, can never be forgiven.

When we can't have money and resources for making progress, could we please at least have our hope? Seems not. Hope alone should not be overrated for patients fighting hell on their own, but my god how much better it would be if we knew that people did their jobs in the best possible way or close to that. If we only knew that things moved forward, not backwards? Edmund Burke said what we all know so immensely well, "that the only thing necessary for evil to triumph is that good men do nothing». I do think that most people are good, but so many are obviously not doing their job properly. Inviting and feeding LP-trolls, we are drowning in them on all levels here in Norway, is killing hope. Why isn’t there medical competent people taking action against this nonsense in regard of ME (CCC) and/or proper curious journalists digging deeper?

 

Merged thread

This post has been moved from the "UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion" thread.

Webinar Oct 13: Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?, Luis Nacul

https://us02web.zoom.us/webinar/register/WN_5_aAJx7XRJiUxctLTroDGw
Norges Myalgisk Encefalopati Forening

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Topic
Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?

Description

Webinar med Luis Nacul.

Nacul har lang klinisk erfaring med ME, og har lang fartstid som forsker. Han har mange publikasjoner bak seg. Han var medlem av komiteen bak de nye NICE guidelines, og har vært tilknyttet den britiske biobanken for ME, og er professor ved London School of Hygiene and Tropical medicine, og er medical director and research director of the Complex Chronic Diseases Program (CCDP) ved University of British Columbia i Canada.
Nacul har også vært medlem av Euromene, og er med forfatter for de retninglinjene for ME som denne gruppen har publisert.
Time


Oct 13, 2022 02:00 PM in Oslo

 

I was hoping there might be a recording of this available at some stage but can't see any such recording here: https://www.youtube.com/@norgesmyalgiskencefalopati5764/videos
even though some more recent talks are available there.