DHHS - soliciting for study on diagnostic criteria for ME/CFS

[Bob]

Here's an extract from the latest CFSAC email alert, dated 12 Sep 2013:

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria. When the contract is finalized, we will provide additional information via the CFSAC listserv and website. This topic will be included as an agenda item for the November webinar.

Full text of email:

Save The Date: Fall 2013 CFSAC Meeting


The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its fall meeting as a webinar on November 12 and 13, 2013, from 12:00 noon – 5:00 pm ET each day. This will not be an in-person meeting. Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats.

We will use webinar technology to accept questions to the committee submitted in real time, similar to the questions received on note cards from the last meeting. For the first time, we will accept prerecorded videos as public comment for the fall 2013 meeting. As in the past, we will have “live” public comment via phone and will accept written public comments. Detailed instructions for joining the webinar and providing public comment will be posted on the CFSAC website www.hhs.gov/advcomcfs/ at a later date. Agenda items will be posted on the CFSAC website by October 28.

The 2014 CFSAC spring meeting will be in-person in Washington, DC; exact dates will be announced in 2014.

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria. When the contract is finalized, we will provide additional information via the CFSAC listserv and website. This topic will be included as an agenda item for the November webinar.

If you have any questions, please email cfsac@hhs.gov.

Thank you,

________________________________________________________
The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:

http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Nielk]

This is way too confusing. There is money for a contract with IOM (I thought that was cancelled), but no money for a live meeting. In what world does this make sense?

 

[Bob]

This is way too confusing. There is money for a contract with IOM (I thought that was cancelled), but no money for a live meeting. In what world does this make sense?

Also, I wasn't aware that the IOM contract was a CFSAC initiative. Did I miss something there?

 

[Nielk]

Also, I wasn't aware that the IOM contract was a CFSAC initiative. Did I miss something there?

It's not a CFSAC initiative. It's a HHS initiative. This e-mail is he stated by HHS. They have said that they had cancelled their action with working on a contract with IOM - so I have NO clue as to what this e-mail means.

 

[Bob]

It's not a CFSAC initiative. It's a HHS initiative. This e-mail is he stated by HHS. They have said that they had cancelled their action with working on a contract with IOM - so I have NO clue as to what this e-mail means.

It's very confusing.

 

[Nielk]

It's very confusing.

Bob - What I mean is that the e-mail was sent by HHS Secretary's office. They are the one's who charter CFSAC and set the agenda. The CFSAC members have no input in this. It's important to know the difference because since they sign it "CFSAC support team", the CFSAC members have probably now previous knowledge of this.

It seems to me from this current e-mail action, that HHS is trying to bypass us - the patients. They don't want us there at the meeting when this upcoming fall meeting is probably the most important of it's history due to their probable contract with IOM. They are forging ahead with this whether we like it or not.
'

 

[Bob]

Bob - What I mean is that the e-mail was sent by HHS Secretary's office. They are the one's who charter CFSAC and set the agenda. The CFSAC members have no input in this. It's important to know the difference because since they sign it "CFSAC support team", the CFSAC members have probably now previous knowledge of this.

So, HHS sends out the emails on behalf of CFSAC.
And HHS can easily misleadingly add its own information to the CFSAC list emails?
Do you think that perhaps the chair of the CFSAC could have approved the message?

It seems to me from this current e-mail action, that HHS is trying to bypass us - the patients. They don't want us there at the meeting when this upcoming fall meeting is probably the most important of it's history due to their probable contract with IOM. They are forging ahead with this whether we like it or not.

Yes, it does seem like a bit too much of a coincidence, doesn't it.
Perhaps they think it will be easier to silence disent in a conference call.
This was the issue that caused the heated dispute at the previous meeting, wasn't it?
I got the impression that the chair of CFSAC was in favour of HHS's actions at the last CFSAC meeting.

 

[Nielk]

The mailing goes out to the CFSAC listserv -
Anyone who signed up at their website http://www.hhs.gov/advcomcfs/index.html will receive a generated e-mail.

When you look at the top of the page at the CFSAC site, you will see that it is part of HHS.gov. It is HHS who chartered CFSAC and they, through the DFO who set the meetings and the agenda - not the chair.

Think of it as if the CFSAC voting members are invited guests to the hosts - HHS party (oops - I mean meeting)

 

[Bob]

Thanks for the info, Nielk.
As a UK person, it's difficult to get to grips with some of the US government processes.
I had thought that CFSAC members control and set the agenda for their own meetings.
The dividing lines between HHS and CFSAC (which I thought was supposed to have a certain level of independence) seem rather blurred and unhelpful.

 

[Nielk]

From the article "Talking with CFSAC" - http://phoenixrising.me/archives/17766

Background information

CFSAC – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose includes advising and providing recommendations to the Secretary of Health and Human Services, through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ME/CFS.
The committee membership is comprised in part by eleven voting members, including the Chair. Seven of these appointees are biomedical researchers with demonstrated expertise in biomedical research applicable to CFS and four are disability or clinical care experts and/or patient advocates
Each public appointee to the Committee serves for a limited term of up to four years. The eleven members of the public are appointed by the Secretary for Health according to the Federal Advisory Committee Act (FACA). All members are classified as Special Government Employees (SGE).
The Committee also includes seven non-voting ex officio members. They include representatives of the following government agencies: Agency for Healthcare Research and Quality (AHRQ); Centers for Disease Control and Prevention (CDC); Center for Medicare and Medicaid Services (CMS); Food and Drug Administration (FDA); Health Resources and Services Administration (HRSA); National Institutes of Health (NIH); Social Security Administration (SSA).

CFSAC was established by HHS (government), who also sets the charter (government). The meetings and agenda are set by the Designated Federal Official. (DFO) (government)
The 11 voting members are from the public. (non-government) The 7 ex-officio members are non-voting. (representing different government agencies)

 

[Bob]

The meetings and agenda are set by the Designated Federal Official. (DFO) (government)

Thanku. This is the bit I wasn't aware of. Do we know who the DFO is? Is it someone who attends the CFSAC meetings?

 

[Nielk]

Thanku. This is the bit I wasn't aware of. Do we know who the DFO is? Is it someone who attends the CFSAC meetings?

Designated Federal Official

Nancy C. Lee, M.D.
I'm sure you recognize her name. She attends every meeting.

 

[Bob]

Designated Federal Official

Nancy C. Lee, M.D.
I'm sure you recognize her name. She attends every meeting.

Yes, thanks for the info, Nielk. That's very helpful. I didn't realise that Nancy Lee had so much influence over the committee. The committee is not as independent as I thought it was.

 

[Sasha]

Yes, thanks for the info, Nielk. That's very helpful. I didn't realise that Nancy Lee had so much influence over the committee. The committee is not as independent as I thought it was.

Frustrating that members presumably can't propose items, such as the IOM issue or what happened with that patient rep (sorry, her name is lost in my memory!) at the last meeting.

 

[Nielk]

Frustrating that members presumably can't propose items, such as the IOM issue or what happened with that patient rep (sorry, her name is lost in my memory!) at the last meeting.

Her name is Eillen Holderman and she is our patient advocate - a voting member on the committee. She has been allegedly intimidated and threatened!!! See article on PRhttp://forums.phoenixrising.me/inde...ith-eviction-cfsac-spring-2013-day-two.23746/
It has been over four months now.
What has been done about this? Have we gotten a reply back from HHS about this?

 

[Sasha]

Her name is Eillen Holderman and she is our patient advocate - a voting member on the committee. She has been allegedly intimidated and threatened!!! See article on PRhttp://forums.phoenixrising.me/inde...ith-eviction-cfsac-spring-2013-day-two.23746/
It has been over four months now.
What has been done about this? Have we gotten a reply back from HHS about this?

Thanks!

I think it said on Jennie's blog that there'd been no reply. Disgraceful. And amazing.

 

[Nielk]

Please see new action here at this thread:

http://forums.phoenixrising.me/inde...o-send-hhs-re-iom-action-as-of-17-sept.25331/