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UpToDate® site CFS pages re-edited with "SEID" as though "SEID" were a done deal

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I would welcome any further examples of medical information sites (not media) that are already using the SEID term or the conflations, "CFS/SEID" or "SEID/CFS."
 

joshualevy

Senior Member
Messages
156
As you all know, I am not opposed to the SEID name. But I am certainly opposed to it being treated as a done deal like this. Shouldn't be used in any official capacity until and unless it is formally accepted (and only after wide ranging consultation with all legitimate parties, including patients).


So we should not use CCC or ICC because those were never officially accepted?
Is that really what you want to say?

Personally, I don't understand this thread. Why would anyone care? I think it's clear that UpToDate is "jumping the gun" on this; at least in my opinion. But why should I care? If SEID catches on, they will be an early adopter. If SEID fails, they will have made a mistake (a very public mistake). Sounds like a dumb risk to me, but it's their decision.

Joshua
 
Messages
15,786
Personally, I don't understand this thread. Why would anyone care? I think it's clear that UpToDate is "jumping the gun" on this; at least in my opinion. But why should I care?
I care because they're calling it SEID and referring to the IOM report, but are still describing the criteria and treatments purely according to Oxford and Fukuda standards. I'd love to see them switch to SEID, since the CFS entry is currently a quack-fest at UpToDate. But equating CF/CFS with SEID while continuing the quack-fest is misleading and unacceptable.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Personally, I don't understand this thread. Why would anyone care? I think it's clear that UpToDate is "jumping the gun" on this; at least in my opinion. But why should I care? If SEID catches on, they will be an early adopter. If SEID fails, they will have made a mistake (a very public mistake). Sounds like a dumb risk to me, but it's their decision.

Uh, because many medical doctors around the world are heavily reliant on "UpToDate" as the go-to place for information on diseases that they are unfamiliar with. It is literally the first place that many doctors will read (along with Wikipedia). That does not bode well for us, given the biases in the article.
 

medfeb

Senior Member
Messages
491
Agree with Snow Leopard and Valentinj. In the U.S. media, there have been many reports that have interpreted SEID as a simple rebranding of CFS and also some reports, including those by doctors, who have called for CBT and GET. One of those even cited Wessely. This conflation in the media has been a concerning trend

But this is the first medical education site that I'm aware of to conflate in this way. Given that the IOM criteria are just diagnostic criteria and not treatment and given the general confusion on the nature of the disease in the medical community, this does not bode well. This kind of confusion needs to be addressed in order to effectively move forward.