P2P workshop Dec. 9 & 10, 2014

[Nielk]

What is needed?

Well designed studies!
Identify minimal changes in outcomes
Refine measures to reduce burden in patients.

 

[Nielk]

In other words, the state of affairs right now is abysmal.

 

[Sasha]

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

Thanks so much - completely solved the problem!

 

[Nielk]

We need more multi site studies like the current CDC study. ( they did not think though of waiting for these results before tackling this p2p?)

 

[Nielk]

In closing we need good measures for mecfs. Case definition alone will be insufficient. ( what does that mean?)

 

[Nielk]

Dr. Saligan

A moment of silence?

 

[Nielk]

10 minute break.

 

[Hope123]

If you look on the bottom of the NIH main ME/CFS videocast page, you can see that a little over 120 people are watching live online:

http://videocast.nih.gov/

Later, when the video is archived, anyone who missed yesterday's meeting may find it in the link below. You can also see how many people have viewed the article. NIH videocasts are usually put up pretty quickly -- you can see Monday videocasts (not dealing with ME/CFS) area already up:

http://videocast.nih.gov/PastEvents.asp?c=0&s=1

They were having problems receiving live comments submitted online yesterday. Stated they only received FOUR online comment. (Technical glitch or nefarious scheme? It seems like every time the gov't tries to hold a meeting, it is difficult for patients to participate remotely.) Re-submit comments from yesterday or give live feedback here:

http://videocast.nih.gov/ContactUs/?LiveID=14727

 

[Nielk]

Back on.

He is a nurse practitioner. Specializing in ... Guess - fatigue!

 

[Nielk]

Investigates potential interventional targets for fatigue.

How does fatigue develop in prostrate cancer? they followed them through their treatments for a year.

 

[Nielk]

Noticed that at baseline there was a significant decline at midterm of treatment. Over time not all patients developed fatigue.

60% high fatiguers. Remaining low fatiguers.

 

[Nielk]

Can anyone explain how the fatigue from cancer treatment compares to ME disease?

 

[Nielk]

Inflammatory genes were involved in cancer. Also in psychological disorders?

What is in the serum of these patients of high fatigue? 200 spots were different. 160 peptides were involved.

 

[Nielk]

High fatiguers increase in complex emzymes and decrease in low fatiguers.

 

[Nielk]

High fatiguers had an alteration of T cells and evidence of mitochondrial dysfunction.

 

[Nielk]

You can submit comments anytime this morning Here http://1.usa.gov/1Gab55Q

 

[Nielk]

This published data looked at identifier genes and differences in pathways iof gene expressions of high fatiguers.

 

[Nielk]

From demonstration now in front

 

[Nielk]

Dr. Hornig

Interested in micro biome in development of CFS.

Neuropsychiatric disease like autism and mecfs are affected by brain-gut connection.

( the slides are not working!)

 

[Nielk]

tryptophan regulates biochemical changes in mecfs.

Gut bacteria influences pro inflammatory diseases like autoimmune diseases.