Discussion in 'PsychoSocial ME/CFS Research' started by Kalliope, Apr 28, 2020.
David Tuller's letter to Dagbladet has finally been published in the paper version today
Does "senior fellow" have another name? I cannot find a norwegian translation for it (and it doesn't seem Dagbladet did either which made me curious).
"Fellow" is just a vague term that means someone has been appointed and designated a "fellow" in whatever--someone with some expertise, I guess.
The response from @dave30th to Dagbladet is now online as well
English version: Trial By Error: Two Letters to Dagbladet About Its ME Coverage
That's great if IMO totally unexpected for Dagaladet to have capitulated.
I'm just glad Dagbladet posted the letter, even if they didn't find a translation of your title, it's in the text after all.
As Tuller was mentioned in the other articles he has a right to reply, I wouldn't say this means Dagbladet have capitulated.
Apologies that was a vague statement. I meant they changed their mind regarding printing the letter.
What goes on in the mind of editors at Dagbladet is of course obscure to me.
And you are right, they have likely not capitulated in terms of their own beliefs regarding LP. But now they have shown that they cannot be ignorant of the view to the contrary as regards LP.
There's a nice picture of David Tuller on the front page of the online version of Dagbladet right now. What a pleasure to see!
His signature is linked, but it's an email address to Dagbladet. Weird..
And today there's a psychologist taking about how stressfull it is to only want to help people but instead be threatened with complaints to the ethics board. Also something about people being against CBT and something weird about the BPS model being valid when there is no biomarker for the disease. Not sure if it's online.
Thank you. The link should be fixed now.
The gay conversion therapists probably said similar things. "We just want to help and there are these horrible militant activists staging protests in front of our work places."
Not exactly high on the self-awareness scale, uh? It's almost as if it's not helpful at all. And almost as if this only happens in that weird space where psychologists intrude on medicine. So odd. It's literally one dot with spaghetti lines connecting to itself. What a mystery this all is.
It took some fights to get it in, but worth it.
A whopping .8% success rate! What do you have to lose? Better odds than the lottery!
This thing is really revealing the clowns for what they are. And there are actual "professional skeptics" who will support this. Amazing.
Let's be honest there is zero chance the assessment will be reliable. Not without independent validation by actual experienced clinicians, none of which would ever give credibility to this nonsense. It will be a mix of "chronically fatigued" people who may or may not have ME with most probably not.
I reread the protocol, they do not mention NAFKAM anywhere, as NAFKAM has raised concerns about the safety of LP you'd think this would be "relevant information".
Psychologist Grete Lilledalen has written an excellent comment in Dagbladet about the recent articles on the so-called "ME war".
The consequences that further stigmatization has for ME-sick children and adults won't leave me. Nor how unreasonable it is that health professionals portray themselves as victims of a disease in which the patient group scores lowest on quality of life and physical function, where one in four is home- and bed-bound, several are tube fed and suicide risk is high .
Harassment is never ok, whether it comes from depressed people who have to wait too long for help, cancer patients who have been diagnosed too late, MS sufferers who think they are ill-treated or ME sufferers who object to treatment that does not work.
But we as health professionals must tolerate that patients can be angry, scared or disappointed. We must bear in mind that they do not feel heard, do not experience their illness experience validated or that they experience not receiving adequate symptom treatment.
Our job is to listen to patient feedback. And when many patients communicate that measures make them permanently worse, we must listen extra carefully.
Den vonde følelsen sitter i
google translation: The bad feeling won't go away
Edited to add an extra quote.
A very different way to think about the topic of aggressive patients is to consider that an indicator of how badly they've been treated. Then we're also examining facts and events instead of nebulous concepts such as personality traits.
Would Lilledalen condemn AIDS activists for being overly aggressive? They were much worse than ME/CFS patients. Nowadays the AIDS activists are praised for their achievements.
I'm not quite sure I understand? This was written in support of ME patients.
As I read it @strategist is questioning the statement that harassment is never OK. If the Act Up movement was harassment that is.
I would also tend to question the idea that this is about harassment being OK since I see no harassment. Pointing out that studies are sufficiently flawed to be unethical is not harassment. She seems to be buying in to the idea that somehow health professionals are suffering at the hands of patients and just pointing out that we need to understand the motives behind that. But health professionals are not suffering, other than being denied the chance to practice quackery.
Ah, I see!
Yes, that's a valid point. She is balancing in the debate trying to find common ground (if that's possible) and taking both side's arguments into account. I hope that increases the chances for those on the other side or those sitting on the fence to at least be willing to read her text..
Separate names with a comma.