Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

[Sasha]

who is speaking now? (Lady with long curly hair).

 

[Nielk]

who is speaking now? (Lady with long curly hair).

I think that's Eileen Holderman

 

[Nielk]

Here is the Medscape CME course on CFS in the CDC website: http://www.cdc.gov/cfs/news/features/cme.html

 

[Sasha]

I think that's Eileen Holderman

Thanks - she said some really good stuff (got my internet back!).

 

[Nielk]

Thanks - she said some really good stuff (got my internet back!).

Yes, She did. I liked what she says about the pictures on the CDC website showing people wearing suits and fit. she said they should show people with varied severity of the illness; like in bed, to the couch to the car..etc

 

[Sasha]

Yes, She did. I liked what she says about the pictures on the CDC website showing people wearing suits and fit. she said they should show people with varied severity of the illness; like in bed, to the couch to the car..etc

Yes, and I thought the rationale for having such pix - the intention to be upbeat - was interesting. They obviously hadn't thought through that if you have a disease that's dismissed as trivial, the last thing you want to communicate about it is a more upbeat message than is justified.

 

[Sasha]

Who is that very good guy with the longish grey hair pushing the primer? I like his persistence!

 

[Nielk]

Unger: The CCC is complex and hard to understand.

Holderman: If the patients understand the CCC, certainly physicians should be able to understand it.

 

[Nielk]

Who is that very good guy with the longish grey hair pushing the primer? I like his persistence!

Krafchick

 

[Sasha]

Krafchick

Thanks!

 

[Nielk]

Aileen Perry (of CMM and patient) quotes Dr. Snell saying that on repeated CPET tests the recovery time is so long. He has not seen this in any other illness. (marker?)

 

[Nielk]

Holderman: Maybe we should wait with further research until we iron out a true case definition?

 

[Nielk]

This is what I am hearing: If we recommend it, they will accept it - NOT!

 

[Sasha]

This is what I am hearing: If we recommend it, they will accept it - NOT!

Not actually sure what I'm hearing. Did Nancy Lee say that the Sec of Health had actually responded to the prior recommendations and that those responses were now on the CFSAC website? Couldn't really believe my ears - sure I must have got that wrong.

 

[Sasha]

Thought that was kind of appalling that even Gaillen Marshall didn't consider himself to have got a straight answer on whether they've been submitting the recommendations wrongly for 10 years without ever being told that - pretty jaw-dropping...

 

[Nielk]

It sounded to me like their recommendations were mostly left on deaf ears.

 

[Mark]

Not actually sure what I'm hearing. Did Nancy Lee say that the Sec of Health had actually responded to the prior recommendations and that those responses were now on the CFSAC website? Couldn't really believe my ears - sure I must have got that wrong.

Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
http://www.hhs.gov/advcomcfs/recommendations/index.html

 

[Sasha]

Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
http://www.hhs.gov/advcomcfs/recommendations/index.html

Had a quick look at the one asking for more NIH funding and it seemed to be one of those govt-speak deflection answers - defining what the NIH does, talking about what money is, talking about the colour of the ink it's printed with, etc. - the kind of stuff I get from my MP, basically.

Perhaps I do it a disservice - just gave it a quick skim!

 

[Sasha]

Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
http://www.hhs.gov/advcomcfs/recommendations/index.html

Oh! I was looking at this one:

http://www.hhs.gov/advcomcfs/recommendations/response-from-ash-10-2012.pdf

 

[snowathlete]

Yes, and I thought the rationale for having such pix - the intention to be upbeat - was interesting. They obviously hadn't thought through that if you have a disease that's dismissed as trivial, the last thing you want to communicate about it is a more upbeat message than is justified.

My question would be: who gets an upbeat feeling when they look at that? It's not the patients, they get downbeat because it trivializes the illness and portrays it as not being that bad. The only people who look at it and feel upbeat are these committee members because they can pretend that this is us, and not feel bad about it - not be faced with the reality of the illness.

If it is an innocent mistake then these people are shockingly insensitive and unthinking. That’s the best case scenario.
I think it is more likely that it is just spin to keep the reality suppressed.