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I think many of us are fed up with well-intentioned but misguided behavioral interventions that have little relevance to ME/CFS reality.

The CDC recommends for ME/CFS, "Limit daytime naps to 30 minutes in total during the day." They really have no clue about the variability of this disease, do they? It's not always appropriate to throw rigid sleep hygiene guidelines intended for healthy people at us.

Note that the CDC "Information for Healthcare Providers" has been "Coming Soon" on the CDC website for almost a year. Apparently, the CDC and I have fundamentally different understandings about the meaning of "Coming Soon". I think of "soon" as defined in the dictionary as "shortly" or...

Bump. Less than 20 hours away. May 10, 2018 3:00 pm - 4:00 pm Eastern Time

In the 1990s, it was fashionable to use lithium as an "add on" drug combined with an antidepressant(s) for treatment resistant depression. The theory was that lithium could enhance the antidepressant effect for those that didn't respond to just antidepressants. I don't know if this is still done...

Over 10,000 views. :eek:

Still waiting for the CDC to update their "Resources for Healthcare Providers". It's been nearly a year of "Coming Soon". I understand these things take time, but where is the CDC's sense of urgency? Doctors in the US still widely don't know how to diagnose ME/CFS. After diagnosis, graded...

Good to see mainstream media no longer pushing graded exercise, and even pointing out harms. Nice jab at the CDC's decades of negligence. Now if they would just stop calling it "chronic fatigue syndrome". :emoji_bicyclist::emoji_cartwheel::emoji_lifter::emoji_skier::dead: 50 Fitness Myths That...

Of the 10% diagnosed, most are not able to work. Need to find a way to get more donations from healthy working people.

My concern is for ME/CFS patients misdiagnosed as refractory depression patients, after antidepressants, therapy and exercise don't improve their condition. Patients might even agree to ECT, particularly if it is the only treatment option offered to them.

Definitely an outlier, but here's an article and commentary about a 55-year-old woman given ECT who lost 30 years of memories. https://www.mdedge.com/psychiatry/article/62301/ect-wipes-out-30-years-memories https://www.mdedge.com/psychiatry/article/62376/ect-and-memory-loss

ME/CFS patients are still routinely prescribed treatments that worsen symptoms. The disease itself, combined with inappropriate treatments, can trigger depression. It would be unfortunate for such patients to be routinely prescribed ECT.

"Talk with me if you want to live."

Thanks, I'll add it to my post above.

Conference updates are appearing on Twitter. https://twitter.com/MECFSconf_mtl https://twitter.com/hashtag/MontrealMECFS18 https://twitter.com/hashtag/MECFSConf18

Perhaps robots would be better than humans at determining which diagnosed psych patients are actually misdiagnosed ME/CFS patients.

On the plus side, all the suddenly unemployed therapists will have "someone" to talk to.

Good catch. Rep. Schweyer's district includes Allentown, Pennsylvania. I feel a Billy Joel song coming on... http://www.legis.state.pa.us/cfdocs/billinfo/billinfo.cfm?syear=2017&sind=0&body=H&type=R&bn=854...

From the IOM report, a breakdown of PEM symptoms. http://nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf