P2P workshop Dec. 9 & 10, 2014

[Nielk]

Dr. Natelson
Subgroups:

Sudden/gradual
Comirbifity
Psych depression
Cognitive issues
Severity

 

[Nielk]

In his group tested patient's with or no psych.

Without major depression - poorer neuropsychology test and higher brain abnormalities.

 

[dancer]

Natelson - subgroup of patients have an encephalopathic process causing their illness. Ongoing study to confirm this.

 

[Nielk]

Miami group show low NK function show more severe symptoms

 

[Nielk]

37% of CFS patients have comorbidity of fibromyalgia.

Differences:

CFS does not respond to antidepressants. Fibromyalgia does.

 

[dancer]

He's addressing the "over-sensitive-to-sensation theory" - (that both Fibro and ME/CFS are the same, just different expressions of the same somatic functional disorder) and saying that doesn't hold up in his research. He finds difference from Fibro and ME/CFS... sorry, can't keep up with all the evidence

 

[Nielk]

CFS has worse cognitive function compared to fibromyalgia.

CFS worse sleep disruptions.

 

[Nielk]

Different responses to 5Ht probe.
IV tryptophan infusions show CFS is high in prolactin. Upregulated.
Brain serotonin high in CFS compared to fm.

 

[Nielk]

incteased cardiac work on exercise of patient having both CFS and fm compared to CFS alone in his studies.

 

[Sasha]

Anyone else getting repeated buffering? Making it impossible to listen.

 

[Nielk]

With more comorbidities of CFS like fm and mcd it is more likely to also have ibs.

 

[Nielk]

Anyone else getting repeated buffering? Making it impossible to listen.

You can adjust the picture top left to change to no HD. It should help.

 

[Nielk]

they just showed Nancy Lee in the audience.

 

[Sasha]

You can adjust the picture top left to change to no HD. It should help.

thanks! who needs HD?

 

[dancer]

Anyone else getting repeated buffering? Making it impossible to listen.

Did you click "standard definition" instead of hi-def? There's a little box in the upper left corner. Taht helped me stop having the audio drop out or buffer.

 

[Nielk]

Beth Unger

Importance of measures:

Complexities like the fluctuation of severity. The variations of patients and medications the patients are taking.

 

[Nielk]

Patient reported outcome measures (prom)

We need to look at commonalities. Pain fatigue sleep function cognition.

PEM might be unique to CFS (you think?)

 

[dancer]

Beth Unger's key theme - studying this illness is HARD. (valid issue - but I keep thinking, "Try LIVING with it!!!")

 

[Nielk]

Self reportedeasures are not objective.

Mood and sleep can impact function and pain

 

[Nielk]

Beth Unger's key theme - studying this illness is HARD. (valid issue - but I keep thinking, "Try LIVING with it!!!")

In addition very few good studies have been done.

Do you think the lack of funding from MIH has anything to do with this?