CNN POTS article: “A doctor said it was all in her head“

https://edition.cnn.com/2018/06/26/health/pots-tori-nick-foles-dysautonomia/index.html

 

Good article and coverage. It's a pity that Lauren Stiles promoted exercise without caution seeing that a huge percentage of POTS patients have a dual diagnosis of ME/CFS (she did mention that many POTS patients are bedridden and I suspect that most of them are Team ME). As the head of Dysautonomia International, she should be more informed. Since MEAction was present at the last conference, I hope there is more involvement and awareness going forward.

 

Definitely Beth and I challenged the idea of exercise for all. One clinician who sat in on one of the exercise lectures challenged the speaker about ME at my request (I was in another conference room). But that presenter was clearly outlining pacing: "don't push the patient past their energy limits, slow and steady / gentle, active when you can be active, rest when you need to rest" type stuff. They also seemed to accommodate a range of ability levels. "Pillow squeezes" as an exercise is something I'd never heard of, but understood immediately. The clinician in question said agreed that all of this was great but that when she specifically brought up ME, the speaker claimed that exercise was "good for everybody".

Others were pushing exercise harder. At a conference session Beth attended, though, intense exercise was recommended (which, to be frank, would probably destroy anyone with OI, much less ME!) It was (probably) this one:



In both cases, they'll see a lot of ME patients and they need to be aware how damaging exercise can be for us. Hopefully an ME speaker next year!