#MEAction Sends Recommendations to CDC to Update its ME Website

[Andy]

This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, some sections of the site continue to misinform medical providers and potentially put patients at risk.

(The CDC had previously removed recommendations for graded exercise therapy and cognitive behavioral therapy a year prior in July of 2017.)

https://www.meaction.net/2018/10/11/meaction-sends-recommendations-to-cdc-for-me-website/

Direct link to PDF with recommendations - http://www.meaction.net/wp-content/...ended-Changes-to-the-CDC-Webpages-on-ME-2.pdf

 

[Milo]

At page 3 of the recommendations, it reads that BP should be taken at 10 minutes intervals, during a poor man tilt table test, was it a typo? Should it read 1 minute interval instead?

 

[Barry]

Very good. Just one little observation.

While presenting a more positive outlook may decrease physician discomfort in dealing with a chronic and debilitating disease like ME, it is disingenuous to imply that patients will return to good health when so few do. Moreover, this can delay patients from getting the social support they need to cope with a lifelong illness.

It can also lead to patients' families misunderstanding why their relative is not recovering, and potentially laying the blame at their door for not doing so. I suppose this is loosely embraced within 'social support'. Probably outside the scope of this though.