I don't twitter either, but know people who do and will ask.I completely understand
I think what we need are teams that can do this, when a new issue is discovered then contact and educate them
Very nice reference material
Is this thread something @dave30th might be interested in writing an article about?
I don't twitter but many forum members do
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Petition: Per Fink Should Not Spread Lies about ME at Columbia University!
Yeah the Kaiser Permanente changes and some family stuff are keeping me busy right now.
The New York State Department of Health website addresses this:
https://www.health.ny.gov/diseases/conditions/me-cfs/
Also, the Workwell Foundation letter opposing GET:
http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf
I will note that the Accreditation Council for Continuing Medical Education has an active Twitter account. You guys know what to do.
https://twitter.com/AccreditedCME
This is the link to the ACCME page on how to submit a complaint:
https://www.accme.org/submit-complaint
Inara
Senior Member (Voting Rights)
Indeed. The usual suspect: Henningsen.
And names I didn't hear before: Hermann-Lingen, Gündel (these are not about ME I think).
Maybe we need a petition for Henningsen, too? He'll say the same things about ME as Per Fink, those two pals.
Inara
Senior Member (Voting Rights)
@Webdog, you have some experience with this. Any tips what to write? I could consider writing something regarding Henningsen if it doesn't have to be a scientific paper.
But how do we know the content of the talks? Could it be Henningsen doesn't talk about CFS at all (he won't mention ME for sure)..?
Ok, looking at "Faculty Bios" Fink and Henningsen will most probably talk about CFS. But we would need to know more to make a complaint, no?
I do see that not knowing the content is an issue for MECFS since it may not specifically be mentioned but there will definitely be a session on bodily distress syndrome and that notoriously has included ME. ( Btw, the program does explicitly mention fibro and puts it in scare quotes -- you'd think medical researchers in that area might question how unbiased and clinically validated that claim is.) There are also sessions on diagnosis where given the symptom set likely to be discussed, and the inherent assumptions of the event, it's doubtful that the full range of possible organic diagnoses will be presented on. The views of the presenters on such questions aren't secrets.
Inara
Senior Member (Voting Rights)
I think Henningsen must be addressed too somehow. He'll say ME (CFS) is psychosomatic, too, and that it is best treated with CBT+GET. That's what stands in a German guideline about "functional symptoms" of which he is the main author. This is actually said on the conference homepage, too, so I think it's highly possible he'll mention ME (CFS), FM, IBS, too. This will make two "experts" that say the same about ME - and two "independent" experts can't be wrong.
But maybe it's enough to counter Fink. If a crowd says one "expert" is wrong, and another one says the same, purely logically it follows the crowd thinks the second expert is wrong, too.
But maybe it's enough to counter Fink. If a crowd says one "expert" is wrong, and another one says the same, purely logically it follows the crowd thinks the second expert is wrong, too.
Sadly when has logic had anything to do with psychobabble?
I think we need to at least contact the actual ME experts at that university.
Especially since Columbia just got federal funding for ME research.
And I think presenting on bds is sufficient basis for complaint. We know the presenters think it includes ME and that just doesn't fly in the U.S any more.
Btw, Karina Hansen has just been freed of her state imposed guardian in Denmark.
Andy
Retired committee member
I have it on good authority that members of staff for the Centre for Infection and Immunity are aware of Fink's visit. My opinion is that they will probably not make any public comment about it, quite possibly feeling that all of their work, so far and planned, adequately indicates their opinion of Fink's beliefs. I can understand that may disappoint people but, generally, that seems to be how they operate i.e. reasonably low profile.
Sasha
Senior Member (Voting Rights)
Unfortunately, it's knowledgeable scientists keeping a low profile that allow this stuff to go unchallenged in academia, with resulting harm to patients.
Andy
Retired committee member
Don't disagree, but, in a large part, I think it's a culture thing. As in, Columbia's culture would be closer to what you might find in the UK (don't rock the boat, work behind the scenes), which would be very different to, say, Stanford's (which is much more open and visible to the public).
Anyway, all of this is just my opinion, I certainly don't speak for CII at all.
Sasha
Senior Member (Voting Rights)
It seems to be a very widespread part of the culture in that part of academia/research that deals with medicine, which is a huge shame because that silence impacts on the wellbeing of patients. It's the very opposite of what universities are supposed to be for, and so disappointing.
boolybooly
Senior Member (Voting Rights)
The chair of the Danish hearing featured on the Unrest video had no compunctions about silencing Dr Stig Gerdes when he brought up the elephant in the room of Karina Hansens unreasonable detention.
I take the view what is sauce for the goose is sauce for the gander and this particular goose deserves to be well and truely cooked.
As a piece of campaigning I think its a legitimate move to protest misinformation and delegitimise the delegitimisation of ME and ME patients.
In my view the attitudes expressed by Fink are blatant careerist opportunism predicated on self serving obfuscation and unscientific confounding of badly drawn stereotypes of fatigue. It doesnt qualify as medical thought and is frankly embarrasing for the Danish government that it allowed this kind of shamanic nonsense to guide its law enforcement agencies.
Per Fink does not deserve a platform, but were he ever to get one I would hope keener minds than mine would be present and permitted to put the counter arguments which expose his despicable fraud for what it is.
I take the view what is sauce for the goose is sauce for the gander and this particular goose deserves to be well and truely cooked.
As a piece of campaigning I think its a legitimate move to protest misinformation and delegitimise the delegitimisation of ME and ME patients.
In my view the attitudes expressed by Fink are blatant careerist opportunism predicated on self serving obfuscation and unscientific confounding of badly drawn stereotypes of fatigue. It doesnt qualify as medical thought and is frankly embarrasing for the Danish government that it allowed this kind of shamanic nonsense to guide its law enforcement agencies.
Per Fink does not deserve a platform, but were he ever to get one I would hope keener minds than mine would be present and permitted to put the counter arguments which expose his despicable fraud for what it is.
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Sasha
Senior Member (Voting Rights)
She doesn't say he was wrong, though. I assume she thinks so because of what she's said elsewhere but it's not explicit in this tweet.
mango
Senior Member (Voting Rights)
If you continue reading that Twitter thread, she also writes this:
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