CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

[JaimeS]

I've probably missed it because I've been swamped with NICE stuff, but do they do drafts that stakeholders can respond to in a similar way? Or is it more of a closed shop?

That's a good question. Spoiler alert: though I went to a conference to discuss the site in 2016, I haven't been involved in subsequent rounds. That means I'm not sure if they showed people drafts, or solicited and took down feedback and ideas in a more general way, without something that concrete.

To further complicate things, they're soliciting feedback kind of always, so there was a recent round of calls to stakeholders that actually had nothing to do with the current changes and will instead inform some future changes.

 

[adambeyoncelowe]

That's a good question. Spoiler alert: though I went to a conference to discuss the site in 2016, I haven't been involved in subsequent rounds. That means I'm not sure if they showed people drafts, or solicited and took down feedback and ideas in a more general way, without something that concrete.

To further complicate things, they're soliciting feedback kind of always, so there was a recent round of calls to stakeholders that actually had nothing to do with the current changes and will instead inform some future changes.

Very opaque.

 

[Kalliope]

JAMA Network writes about CDC's new website for CFS

Chronic Fatigue Care

The article is short and not very informative.

 

[Webdog]

JAMA Network writes about CDC's new website for CFS

Chronic Fatigue Care

The article is short and not very informative.

Hard to recommend this. Article is all about the fatigue.

1. Article is titled "Chronic Fatigue Care".

2. Article states fatigue is responsible for impairment of function. CDC does not say this.

Article: "People with ME/CFS may experience extreme fatigue that prevents them from doing everyday activities"
CDC: "ME/CFS is characterized by reduced ability to perform pre-illness activities that lasts for more than 6 months and is accompanied by profound fatigue."

3. Article says pacing reduces fatigue. CDC says pacing helps manage PEM.

Article: "They may also recommend pacing activities to help reduce fatigue."
CDC: "An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing)"