UpToDate ME/CFS information

[Utsikt]

I am new to this forum and discussion, but I landed here after learning—in my quest to educate my son’s providers—that the American Academy of Pediatrics is woefully out of date regarding ME/CFS and treatment recommendations. It appears they are relying heavily—both in their online and written (ie, textbooks) materials—on research from Prof Crawley and other proponents of CBT and GET. I reached out to them to urge correction/update but got an auto-reply that they can’t provide medical advice to patients or parents (which of course I wasn’t requesting).

Really discouraging to learn that UpToDate is also shamefully OutOfDate.

Welcome, glad you found the forum. That wasn’t a very encouraging response. Hopefully someone reads the message and gets back to you with a proper answer.

The factsheets might be of use. And feel free to ask questions anywhere - if you’re wondering about something you can be certain others are as well.

 

[MEnotMe]

Welcome, glad you found the forum. That wasn’t a very encouraging response. Hopefully someone reads the message and gets back to you with a proper answer.

The factsheets might be of use. And feel free to ask questions anywhere - if you’re wondering about something you can be certain others are as well.

Thank you—I’m eager to check out the fact sheets.
I did reply immediately to the AAP’s initial response and further detailed my concerns with the information they are providing. That was yesterday, and I have not heard back.
I’ve thought about reaching out to authors of the 2017 Primer to see if they might pressure AAP to provide better guidance. I’m not sure what else to do. It’s discouraging that a few poor quality, biased studies are so “sticky” in these professional organizations, while the large volume of high quality research that challenges old assumptions can’t seem to get any traction there. Ultimately, it’s the patients who suffer.

 

[Nightsong]

Welcome to the forum. Yes, unfortunately many of these clinical-decision/support tools' articles on ME/CFS are in need of considerable revision. The BMJ Best Practice one, which we discussed briefly here (link), is in my view a little better than the UpToDate one, although it still really requires some improvement and I suspect BMJ Best Practice is far less widely used in the U.S. than it is in the NHS.

Given how frequently they're used these days, these clinical resources should really be the subject of an serious effort by charities & advocacy organisations to have them improved, although I'm not aware of any such efforts. In the past an individual associated with ME Action in the U.S. contributed a patient perspective article on ME/CFS to UpToDate (link), but that was years ago.

As for medical textbooks I made a couple of previous posts about what I had found skimming through half a dozen or so of them (link 1, link 2). Their coverage of ME/CFS was in general quite dire, with a notable exception being the chapter in Harrison's due to Unger et al. which, while indulging some speculative stuff about the HPA axis etc, was very patient-friendly by comparison.