Search results

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 symptoms to lay down, or at least sit down. It's interesting that in general, exercise increases blood circulation, but with POTS, the more time I spend...

Physiatrist website: https://capmr.ca/about-us/what-is-a-physiatrist/#:~:text=Physiatrists%20are%20physicians%20who%20specialize,functional%20abilities%20have%20been%20impaired.

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, and 668 participants with ME, it seems to me that with these numbers, perhaps there is some promise here to follow these authors' hypothesis to prove...

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 in at least 2 areas, but was basically shrugged off as not important. No mention of sympathetic or parasympathetic nervous system alterations, which...

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, and perhaps earlier. Abnormalities have been found, such as hypoperfusion, reduced grey matter, edema, and demyelination, but no one seems to have the...

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 surgery, even though I am anesthetized. I sometimes have tachycardia when supine.

Interesting, and perhaps promising. Although waiting another 10 years for a brain model of neuroinflammation is too long. I hope these researchers are aware of Jarrad Younger's research on neuroimflammation in ME.

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 ineffectually treated, leading to the neglect of a very serious physical health issue. In my experience, this is the go-to plan of action for many...

Unfortunately, this situation, and those like it seem relatively common. One would think that seizures would trigger a MRI brain scan investigation, and other neurological testing, not sectioning for mental illness. The default action in many situations is to blame the patient, and their...

Excellent point @Trish Normally, care is taken when prescribing drugs for patients. However, some mainstream practitioners seem to ignore common sense, scientific care and logic when handing out advice on unproven so called mental health treatments. There are two sets of standards here.

Totally agree. Ascertain the real situation first. Don't assume. It's probably the best option in many, if not most situations, even emergencies, where checking out the situation is safe first, should be done before getting in there.

Assistance with problems can often do more than chanting Pollyanna phrases. I recently saw a Canadian Broadcasting Corporation TV program about the high cost of rental housing. And, not only the extraordinarily high costs, but the appalling situations people are living in. One such person...

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. They were all so confident they could cure me. When it became clear they couldn't, my disease and lack of improvement became my fault. A number of them...

@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 the clap-trap of the LP. Show me the proof!

First off they should at the very least change the disease name to ME/CFS. Although, "CFS" is a misleading, stigmatising, loathsome term that should be eliminated forever!

@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.