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

[Bob]

Bump. 5 minutes till start. Jazz music now playing!

 

[SOC]

Today is one of my long tutoring days, so I won't be able to listen to much (if any) of the meeting. If anyone is up to posting highlights as the meeting goes on, I would greatly appreciate it.

I have lost faith in the CFSAC, especially with Nancy Lee as DFO, but my eternal optimism apparently wants to believe that this year, what with the IOM and P2P reports and recent research developments, things may be different....

 

[Sasha]

Steve Krafchick is back! I love that guy!

 

[Sasha]

Glad to see Carole Head - she impressed me at the Solve IOM presentation. She's a largely-recovered patient so she knows the score.

 

[Bob]

Yay, Steve Krafchick has returned as a non-voting member, I think he said he's representing IACFS/ME. I'm pleased that he's back.

 

[Bob]

Steve Krafchick is back! I love that guy!

Ah, i see i'm not the only one! (It took me five minutes to work out how to spell his name!)

 

[Bob]

CDC:

"Primary goal is revision of CDC webpage."
"Needs assessment will identify additional education materials and target audience for each."

They will consult with stakeholders (but I missed the details about this.)
They anticipate initiation later this year. (October 2015?)

 

[Bob]

NIH:
No mention of ME/CFS moving to a new office.
No mention of increased funding budget.

Lots of waffle, talking about budget restrictions etc.

 

[Bob]

NIH:
In response to questions re funding: You are being heard. Discussions are happening at NIH and changes are coming.

 

[Bob]

NIH:
To change the amount of funding we need specific RFA's and other approaches.
"I want to assure you that there are discussions going on at NIH at this time which i hope will discuss some of these issues."

 

[SOC]

NIH:
No mention of ME/CFS moving to a new office.
No mention of increased funding budget.

Lots of waffle, talking about budget restrictions etc.

BS! Don't talk to me about budget restrictions as long as you're funding research for male pattern baldness. You've got money somewhere, it's about how you distribute it. Priorities, people, priorities!

Off to work now.... Thanks for reporting highlights here.

 

[Bob]

NIH:
Timeline re budget: "I think it will happen within the next few months." (But this isn't certain.)
Re government in general: "Things don't happen quickly."

To Carol Head, re influencing events, the suggestion is to write to Dr Francis Collins.

 

[Bob]

BS! Don't talk to me about budget restrictions as long as you're funding research for male pattern baldness. You've got money somewhere, it's about how you distribute it. Priorities, people, priorities!

Off to work now.... Thanks for reporting highlights here.

Also, read my next few posts - things seem to be happening at the NIH.

 

[Sasha]

Was hoping someone would mention the scientists' letter (launched today) to the NIH rep.

The NIH rep said that RFAs are expected to be issued when the NIH has its meeting to review the IOM and P2P in the autumn, if I got that right.

I like the look of the NIH rep (Vicky Whittemore) - her sister has FM and she seems keen and sympathetic. I think she would be persuadable on issues such as 'fair share of the existing pie' rather than 'the pie has to get bigger before we get our fare share'.

 

[Bob]

In case my previous posts are unclear, the suggestion from the NIH official is that there are high level discussions happening at the NIH in relation to the budget for ME/CFS. She says "You are being heard." Also it seems that RFAs are being discussed, but there was nothing definite in relation to RFAs. The discussions should come to fruition possibly in a few months, but there's not a definite time scale.

 

[Bob]

Of the IOM diagnostic criteria, Nancy Klimas says: This was supposed to be a broad/heterogeneous clinical-only set of criteria. She emphasises that it is not a research criteria; This was not supposed to be a narrow research criteria. She says it is broad so that very ill people on social security are not excluded.

To researchers, she suggests: If it doesn't suit your purposes, then do not use the IOM criteria. "Do not use it." But use criteria that suit you. For example, she uses CCC. But any other criteria can be used to create cohorts or sub-cohorts that suit the research. She's clear that this is not to be adopted for general research purposes.

The IOM report is within the top ten downloads, and she says that patients have told her that they have presented it to their doctors, and the doctors have then apologised to them for not taking their illness more seriously.

She says she's happy with the name that they've come up with (SEID), but that she'll get behind any name the community comes up with as long as it's not 'chronic fatigue syndrome'.

 

[jimells]

What I heard from the NIH rep is a lot "we hope" and "hopefully". I didn't hear any "we plan to issue an RFA by Dec 31" or "we're looking at ways to double research money by this time next year" or anything definite about anything. Is this really how a thirty-thousand-million-dollars-per-year organization is run, on "hope" and "hopefully we might do something some day"?

This is just more BS intended to placate critics.

 

[Bob]

Public comment taking place now.

 

[geraldt52]

CDC:
"Primary goal is revision of CDC webpage."
"Needs assessment will identify additional education materials and target audience for each."

Lofty goals those. 30 f'ing years.

How can anyone believe that the CDC, or anyone who has carried water for the CDC over the years, gives the slightest shit about anyone with CFS? How many years has Unger been in charge now, promising something different? I just can't reach any other conclusion than that they don't want the answer to be found...it has to be more than utter incompetence.

 

[jimells]

What happened to the rest of the comment period? The agenda calls for it to last until 12:15 pm, but it seems to be over much earlier. Did I miss a schedule change? Will the meeting resume at 1:00pm?

Thanks.