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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

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Valentijn

Senior Member
Messages
15,786
Cynthia Mulrow (committee member) asked about using data from selected groups without knowing if they are properly representantive. Sounds like she thinks the patient group should be broader?

Unger responds that this is a starting point for making comparisons.
 
V

Valentijn

Senior Member
Messages
15,786
Susan Maier from HHS is up next.

Oh dear. She's the one I hate from the CFSAC meetings :p

She says she's new to CFS and has been learning a lot. Maybe sorta apologizing for past poor attitude?
 
V

Valentijn

Senior Member
Messages
15,786
Something about "Pathways to Prevention (P2P) Program": looking for evidence-based definitions. And explaining that they support research and researchers.
 
V

Valentijn

Senior Member
Messages
15,786
Maier says the P2P meeting is in February. Involves federal members with an interest in ME/CFS research.

Apparently it was an easy sell, due to a need (people have something wrong with them), no FDA approved treatment, no cure, and it's a public health issue.

Next phase is a working group meeting: composed of ME/CFS experts, feds, advocates, caregivers.

3 questions for the meeting: Agency for Health Research Quality (AHRQ) - contract.

Task I
How do ME and CFS differ?
What tools and measurements?
Characteristics of responders to treatments?
Research regarding diagnosis?
...

Task II
Topics (above)
Speakers: clinicians, researchers, pro or con, balanced contrary opinions, opinion leaders
Format: 2 days, 20 minute time limits

Task III
Nominate panel members: USA citizen, highly recognized experts in their area (not ME/CFS) such as ethicists, attorneys, economists, cannot be "conflicted" with ME/CFS.
Content experts: Working group members, speakers, reviewers, can be conflicted/opinioned/biased.
 
V

Valentijn

Senior Member
Messages
15,786
The workshop needs to be approved, and that hasn't happened yet. It's seen as a "conference" for funding/financial purposes.
 
V

Valentijn

Senior Member
Messages
15,786
The panel will receive submitted documentation 6 weeks before the workshop. Then the expert speakers will provide "perspective" at the meeting for the non-expert panelists. Then the non-expert panelists write their recommendations within 24 hours.

Maier says the P2P processes and IOM processes can interact somehow?
 
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leela

Senior Member
Messages
3,290
the panel has 24 hours to write up what? review of all the "evidence? what evidence will be inculded/disincluded?
 
Nielk

Nielk

Senior Member
Messages
6,970
Mayer says the panel of non-experts of the P2P is like a jury of your peers at a court proceeding....deciding on the health of nearly a million patients.
 
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leela

Senior Member
Messages
3,290
maier to klimas just now:
"the P2P is not charged with creating a case definition.[...]
it is to review the evidence in supporting all case definitions that have been used"
 
Nielk

Nielk

Senior Member
Messages
6,970
I find it a little weird that Klinmas is both on the IoM and P2P workshop.
 
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