I've started to think my PEM, which often happens after errand days is caused by being continually upright for a few hours.
What a Kafkaesque nightmare. If a pwLC is somehow forced to do a GET and CBT program. Especially if they have PEM and POTS.
:thumbup:
My pacing with POTS and ME is not completely controlled by me. I can't expect to make up a schedule of when to rest. I am forced by ME/POTS...
Physiatrist website:...
The IOM/NAM includes sleep problems as an inclusion in its ME/CFS definition criteria. As does the CCC, and the ME-ICC. Given these 24 studies,...
I wish that this level of understanding had been applied to my sleep study done quite some time ago. My sleep study documented disordered sleep...
I agree with the sooner we start the sooner we get somewhere. However, researchers have been doing brain imaging of pwME since the early 1990s,...
I hope your surgery went well @Jessie 107 I have POTS. I make sure to tell the surgeon and anesthesiologist that I may have tachycardia during...
Interesting, and perhaps promising. Although waiting another 10 years for a brain model of neuroinflammation is too long. I hope these...
Yes, the BPS crowd claims it's important to treat bio, psycho, social aspects of a patient. But, in this instance only psychological aspects were...
Unfortunately, this situation, and those like it seem relatively common. One would think that seizures would trigger a MRI brain scan...
Excellent point @Trish Normally, care is taken when prescribing drugs for patients. However, some mainstream practitioners seem to ignore common...
Totally agree. Ascertain the real situation first. Don't assume. It's probably the best option in many, if not most situations, even emergencies,...
Assistance with problems can often do more than chanting Pollyanna phrases. I recently saw a Canadian Broadcasting Corporation TV program about...
I second that @RedFox It's taking an awfully long time to see the published results of the NIH intramural study.
L Good points @Trish @RedFox Your experience sounds familiar for sure. Sounds like you've seen other practitioners of similar ilk. I have....
@Trish What trying experiences to go through. Amazing, and yet maybe not, how people with what I hope are science based degrees, can fall for...
First off they should at the very least change the disease name to ME/CFS. Although, "CFS" is a misleading, stigmatising, loathsome term that...
@Hutan I guess if Dr. Shan's work is pretty good, does he use the CCC or ME-ICC? Should be interesting. We need more ME brain studies.
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