ME: It's a lot about shame and (un)dignity
ME is being discussed again. This time because Harald Eia and Tore Sagen had a podcast on the topic and Harald Eia was on Dagsnytt 18 debating against the most productive and prominent representative of ME activism in Norway right now.
I haven't heard the podcast, but I heard Dagsnytt 18. I missed the voice of those who have improved and healthy there, even though Sigrid Sollund mentioned them. Then it would not have been as easy to
https://www.dagsavisen.no/.../bekjennelser-fra-en.../
.. and by all means watch this short lecture by Anette Lie. She herself was diagnosed with ME and had a child diagnosed. That's one of the strongest and bravest things I've ever seen..
https://vimeo.com/364445066
Or read this by Hilde and Anne Mari... “We are the invisible in the ME debate”... They write: "We are not so popular in the ME debate as we have recovered from ME using cognitive techniques. Our voice is certainly not that important to listen to. "It is about as important to listen to ME patients who have been recovered by cognitive techniques as it is to listen to cancer patients who have recovered from kale smoothie and yoga" or "You didn't have real ME", "You were just a little tired." These are the comments we get, those of us who stand up and say that we have recovered. "
Or read Dagbladet's investigative journalism on the subject. They were signed up for pfu From the woman who was on Dagsnytt 18 yesterday with Eia and spoke as if it is incomprehensible that someone is asking questions here. Journalists who ask questions will be reported to PFU. NRK was also there when they asked questions. Researchers and doctors are reported to various councils for medicine, supervision, committees. Research is trying to stop it. The...
https://www.dagbladet.no/.../full-me-krig.../72513531
If you want to read in English, read here.
https://www.reuters.com/.../uk-science-social-media...
Read about a death threat.
https://www.theguardian.com/.../chronic-fatigue-syndrome...
Or "Dangers of doing research into chronic fatigue syndrome". This is ten years old now. The journalists are on the spot rest. It just goes on and on.. the integrity of scientists is under threat.
https://www.bmj.com/content/342/bmj.d3780
Or watch a video that was posted by people involved in Danish ME-activism when they persecuted the Danish doctor and researcher Per Fink.
A leader at Akershus University Hospital is protesting against pressure against scientists (his hospital has some of them)...
https://www.aftenposten.no/.../pasientgrupper-sjikanerer...
Things have been happening for some time now. Read for example Power Shift, a leader in the Journal of the Norwegian Medical Association in 2012.
https://tidsskriftet.no/2012/02/maktskiftet
"What causes some studies to gain huge media attention, shape opinion and lead to political action, while others are ignored in silence?... The bloggers have ensured the viral dissemination of Fluge and its employees' article, as they do with other information that supports their views. "
Does anyone remember this action against the Labor Party's Facebook page a few years ago?
https://marthashave.wordpress.com/.../me-og-fm-pasienter.../
The list of chains could have been much longer. A year-long battle to prove the disease is "physical". And that there is no shame. I wish the shame would go to bed. It’s nothing to be ashamed of. The suffering is legitimate even though some can do something about it.
· ·