Next CFSAC Meeting - August 18th & 19th, 2015

[Denise]

Public comment today was provided by
Nancy McGrory (consultant for Hemispherix),
Bob Miller,
Matina Nicholson,
Charmian Proskauer (MassCFIDS),
Deborah Waroff,
Sharon Shaw (I don't know if I caught the name accurately),
Colleen Steckel,
___ Steinberg (Boston area patient and parent of a patient) -again I may not have caught the name properly.

 

[Cheshire]

Next slide

 

[Sasha]

Who is speaking?

 

[Cheshire]

 

[Cheshire]

They advocate for ME (not yet adopted)

 

[Cheshire]

 

[Cheshire]

 

[Cheshire]

 

[Cheshire]

Who is speaking?

Shermian?

 

[Cheshire]

They don't all agree but "Cfs is off the table"

 

[Sasha]

Last thing I heard before the jazz music started for the lunch break was somebody moaning, "Oh, hell..."

Think that was Mary-Anne.

 

[Scarecrow]

Why don't they just take the sensible approach and go for encephalopathy? It's neutral and correct.

 

[Sasha]

Thing with the name is surely that if they defer the decision, the CDC (or whoever's in charge of this now, I forget) will have rolled out with SEID in the meantime. Surely they need to decide now or not bother?

 

[Scarecrow]

the CDC (or whoever's in charge of this now, I forget)

HHS?

 

[jimells]

They're now talking about the name. Here's their proposal (not yet discussed)
View attachment 12221

Where did you find that? I sure could use some printed aids to follow while listening on the telephone...

 

[Denise]

Where did you find that? I sure could use some printed aids to follow while listening on the telephone...

I have been taking screen shots throughout the discussion - they help me follow a bit better.

 

[Cheshire]

I'm watching the video recording http://www.hhs.gov/live-1/#.

 

[waiting]

They don't all agree but "Cfs is off the table"

Another valiant effort.

 

[waiting]

Does the public gallery seem emptier than usual for a CFSAC?

 

[akrasia]

Fluge and Mella are using Myalgic Encephalopathy/CFS

B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment

I see the IOM report as transitional, a useful stick that increases legitimacy and holds a place of seriousness in the debate, until we have more science.

There is a case for M.E., as Dr. Levine indicates, based on some new research from Montoya and Hornig/Peterson, and on a morale level, as Maryann Fletcher articulated. She understands the struggle people are having keeping up their spirits. I was moved by her concern.

The use of Encephalopathy strikes me as a bit ersatz, gesturing towards Ramsay's definition without having to make a commitment, even if at the moment it seems more accurate.

Initially, I thought SEID might serve short term as a way to transition from CFS. But there's no point, in creating more unhappiness in this community. And M.E. has been the way for many of us, historically speaking, to put down our marker and express defiance toward the insane and immiserating social construction that CFS came to embody.