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

[Valentijn]

Nancy Klimas is involved with both groups, and mentioned that it sounds like there's some redundancy in what the groups are doing.

Maier says the goal of the P2P is not to develop a definition, but to review definitions.

Klimas asked if info from one group could be available earlier than the announced date, so that the other group can use it.

Maier responds they're reviewing different info. So that sounds like a "no".

 

[Valentijn]

I find it a little weird that Klinmas is both on the IoM and P2P workshop.

I'm not complaining!

 

[Valentijn]

Cynthial Mulrow: can the committee have access to the search strategies used in the report? Can evidence tables of preliminary data be shared with the committee?

Maier: I don't know, but will find out.

 

[Valentijn]

For anyone wondering who the hell Cynthia Mulrow is: http://forums.phoenixrising.me/inde...mins-cynthia-mulrow-one-of-the-authors.27096/

 

[Valentijn]

Woohoo, 15 minute break!

 

[Nielk]

They are speeding ahead of schedule.

 

[alex3619]

And Nancy Lee from the HHS is pretending that this IOM BS is what the CFSAC asked for.

Yes, it was deception by omission.

 

[alex3619]

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.

When someone in the US, not the UK, calls it CFS/ME you have to wonder.

 

[alex3619]

lily chu is awesome.

 

[alex3619]

The P2P evidence review documents will be available at some point. It is very important that we later examine these carefully.

I have been quiet until the break, and about to go quiet again ... too busy watching.

 

[Firestormm]

How much longer to wait for advocate session? Thanks

 

[Valentijn]

Now the woman from the FDA, Sara Eggers. Enthusiastic and pleasant, but again doesn't seem particularly pertinent to the IOM.

 

[Valentijn]

How much longer to wait for advocate session? Thanks

About 20 minutes.

 

[JT1024]

Way to much time spent regurgitating what is well known to patients and ME researchers and physicians.

What is the point of Sara Eggers' presentation?

 

[Valentijn]

More from the FDA, relaying the results they got from patient response. Very thorough notes, and they really seem to have paid attention to symptoms, triggers, and severity.

 

[Valentijn]

Eggers is basically done, advocate organizations might be starting in a minute or two.

 

[Valentijn]

Gabby from PR is speaking first, starting immediately.

 

[alex3619]

Gabby is up next.

 

[Valentijn]

Audio is somewhat bad from the phone.

 

[Valentijn]

There are also slides, which are helping a lot.