Live webcast IoM meeting Jan. 27th 1:pm starting

[Valentijn]

Uh oh - technical difficulties already - anyone else?

Still working for me. But if you click on the screen, it pauses

 

[Valentijn]

In response to a question by Lily Chu, Lee is clarifying that committee members can adopt an existing definition, or alter one, or mix and match, or come up with something completely original.

 

[Firestormm]

CFSAC defers to the IOM Panel of expertise.

 

[Valentijn]

Lee is now clarifying that this is primarily a clinical definition, not a research one (though researchers might end up using it too).

Also: "subgroups are good".

 

[Valentijn]

In response to Betsy Keller (committee member), Lee says the government doesn't endorse medical care providers, so presumably won't make a list of ME/CFS providers for patients who have trouble finding care.

 

[Nielk]

It sounds to me that the Statement of Task is........whatever the panel decides it should be.

lee want them to have a list that a nurse practitioner can look at and know this is the disease.

 

[Nielk]

Remember, we can send in comment at any point at: Email: mecfs@nas.edu

 

[Valentijn]

In response to some female committee member without a visible name, Lee affirms that public input will be allowed. This can be done via an email address, according an IOM person.

 

[Firestormm]

I think Gabby, they were asking how when a definition is determined (and maybe a name), how it would be dissiminated out across medicine and healthcare. That would be something beyond the scope of IOM but HHS would come into play...

 

[Valentijn]

Elizabeth Unger from the CDC is speaking now. Called it "chronic fatigue syndrome/ME". She is emphasizing that it's complex and heterogeneous. Slide say "What about those who don't meet all criteria?"

Unger also mentioned that medication use hasn't been studies, and should be. Also demographics.

 

[Nielk]

I think Gabby, they were asking how when a definition is determined (and maybe a name), how it would be dissiminated out across medicine and healthcare. That would be something beyond the scope of IOM but HHS would come into play...

I think that it is part of the task of the IoM - dissemination to clinicians and others.

 

[Nielk]

Unger - heterogeinity is big problem with research ....it wouldn't be if the definition were not as broad as Fukuda.

 

[Valentijn]

Unger is quoting CFS specialists who say there is no homogenous group which can be defined by existing definitions.

 

[Valentijn]

Unger keeps calling it "CFS" but says "ME" and post-viral fatigue should be included.

 

[Valentijn]

Only exclusions for the clinic studies are HIV+ or age 62+.

 

[Valentijn]

Unger is showing some preliminary data from questionnaires in the studies. Plenty of "fatigue", but no problems with motivation or mental health. PEM listed as one of the worst symptoms. More pain, fatigue, and sleep problems than MS or post-polio patients.

 

[Nielk]

I'm confused. This presentation was supposed to be from 2:00 to 2:30.

Did they nor have more questions for Dr. Lee?

 

[shannah]

Unger is showing some preliminary data from questionnaires in the studies. Plenty of "fatigue", but no problems with motivation or mental health. PEM listed as one of the worst symptoms. More pain, fatigue, and sleep problems than MS or post-polio patients.

That last slide of Unger's was interesting!

 

[Valentijn]

Lily Chu is asking about the timeline, and if multiple physicians could agree regarding diagnosis of patients, and if any questionnaires inquire about daily activity.

Unger says they are referred patients, so to that extent they have been diagnosed by multiple doctors, but participating physicians aren't conferring regarding diagnosis of their patients.

There were no questionnaires regarding daily activities.

 

[Valentijn]

Rowe is asking about the problem regarding questionnaires asking about symptoms which might already have been successfully treated at the clinics, hence won't be reported. I think Unger is saying that symptoms at entering the clinic are also recorded, but basically it's a limitation of their data.