Next CFSAC meeting date has been announced for November 8, 2011

[mezombie]

Write Dr. Lee and demand the resumption of live videocasting of the meeting!

There is a Facebook Event asking people to email Dr. Nancy Lee and others. The CFSAC meeting has been videocast live for the past three years. It is an accommodation for disabled people who cannot attend the meeting.


Now they will only do audio. This will not accommodate those who are sound sensitive or need visual cues to follow the meeting.


Please go to the Facebook event here for more details:


https://www.facebook.com/events/233487310041319/

 

[Hope123]

In past years, there was a push to get people to attend. I don't see that now. Is it because it's useless?

It's hard for people to attend for both physical reasons as well as financial ones. Even for people who are financially more stable, having only a few weeks to find an airline ticket means going can be quite pricy. Since 2009, there have also been alternate ways for people to participate: sending in a letter, calling in testimony, watching the meeting live (now under threat) or seeing it archived later on. However, it's never useless to attend; attendance allows you to put names to faces, shows officials we are present and won't back down, and allows officials to see in person who is affected by this illness.

FYI for everyone, there are less than 15 disease-specific federal advisory committees in the US so it is quite an advantage for us to have one and committees are not easily granted. CFSAC gathers practically all the relevant government agencies (Medicare, Social Security, FDA, CDC, NIH, etc.) in one place at one time to hear our concerns. If there was no CFSAC, we would be left contacting each agency separately and having no one to call on or coordinate other agencies.

There is also a difference between the official members of CFSAC, who are NOT governmental employees and instead are often researchers, clinicians, patient advocates, and disability lawyers, and "ex-officio" members who are governmental employees from CDC, NIH, etc. CFSAC official members have included Nancy Klimas, Lenny Jason, Lucinda Bateman, etc.; they can make recommendations but the difficulty is that the federal charter which created CFSAC doesn't give them any teeth to enforce those recommendations. The recommendations, in my opinion, are usually right on but because there is no teeth, it is difficult for actions to be carried out. In addition, CFSAC members are bound by certain federal laws applicable to all federal committees when they sign on so if things appear to be slow, it's not simply due to the inaction of CFSAC members.

For CFSAC to have teeth would require a new / amended charter and that would likely require some sort of bill or amendment that needs to be sponsored by a Senator or Representative.

 

[Nielk]

If I do go and give testimony, I was thinking of doing it in Limerick form, (just kidding) What can I say that they don't already know or have heard. The only thing I think I can do is put a face to the illness and personal story. They know that we need funding. They know we need more studies to find bio-markers. They know the name is a joke. I'm sure they all know about the new ICC. They know that doctors need more education about the illness. What can I tell them that they don't already know?

























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[Dolphin]

If I do go and give testimony, I was thinking of doing it in Limerick form, (just kidding) What can I say that they don't already know or have heard. The only thing I think I can do is put a face to the illness and personal story. They know that we need funding. They know we need more studies to find bio-markers. They know the name is a joke. I'm sure they all know about the new ICC. They know that doctors need more education about the illness. What can I tell them that they don't already know?/

One place you could look for ideas is the lists of other submissions from the past and see if there are any points there you want to echo/highlight or expand on. The submissions to the last meeting are at: http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html . These submissions on average would hopefully be more focused on things connected with the CFSAC in some way than an average read of the forum (which would cover lots of countries for example). Don't feel you have to follow this suggestion of course. And don't feel you have to make a submission if you don't want to.

 

[Hope123]

Go ahead and give the testimony in limerick form! It might actually make people notice your testimony more.

Reasons to testify:

1. Add your name (or not, if you want to stay anonymous) and be counted among the people affected. I have a friend who works in government in a non-CFS field but in a public relations area. They do count and pay attention to what people testify or contact them about. They also read blogs, forums, etc.

2. We shouldn't assume that members, especially ex-officio members, know everything about the illness. Ex-officio members rotate in and out so some might not have heard directly about an issue. For example, Dr. Nancy Lee, the person in charge of this meeting, just started in May; the AHRQ, Social Security, and FDA rep are new, just starting in May. Remember these folks are physicians and researchers and non-health officials, who likely have not gotten educated about CFS during their training and work experiences. Furthermore, it takes repetition sometime for an idea to take hold and people learn in different ways -- sometimes, the way one patient presents something might be easier for one official to understand than another patient.

3. Hold government accountable and make them aware we know what is going on. If the government or any entity for that matter feels no one is watching them, they might pay even less attention. But if you mention in your testimony that you know only $6 million is given in a "good year" to CFS research (not to pick on a specific area but infertility research gets $40 million a year) and that only $3.64 per affected person per year is spent on CFS research, that might make them think twice.

4. Some things you can ask for:
- Renew CFS "Request for Application" (RFA) within NIH. This expires next January. Without an RFA, no money will
be set aside for new CFS research starting in January.
- Ask that Centers of Excellence be built and/ or funded for CFS. Centers educate people, take care of patients, an
d do research for a specific illness. There are centers for all types of illness that are better understood, have
treatments available but none for CFS. There were 3 in the US in the early 2000s generating a fair amount of rese
arch (Klimas, Buchwald, Natelson) but they were cut for no clear reason.

Bottom line for me: It's easy to be cynical/ bogged down/ hopeless, etc. and decide nothing I do will make a difference but I would rather die fighting than look back in hindsight 20 years from now, when I could still be sick, and wonder What if I had done more? try harder? Would things have been different? If we look at history and any movement (civil rights, womens rights, labor unions, environmental movement, etc.), it's only in hindsight that we know which were the pivotal moments that made a difference.

If I do go and give testimony, I was thinking of doing it in Limerick form, (just kidding) What can I say that they don't already know or have heard. The only thing I think I can do is put a face to the illness and personal story. They know that we need funding. They know we need more studies to find bio-markers. They know the name is a joke. I'm sure they all know about the new ICC. They know that doctors need more education about the illness. What can I tell them that they don't already know?

























/

 

[Dolphin]

Good points, Hope123.

Bottom line for me: It's easy to be cynical/ bogged down/ hopeless, etc. and decide nothing I do will make a difference but I would rather die fighting than look back in hindsight 20 years from now, when I could still be sick, and wonder What if I had done more? try harder? Would things have been different? If we look at history and any movement (civil rights, womens rights, labor unions, environmental movement, etc.), it's only in hindsight that we know which were the pivotal moments that made a difference.

This reminds me of something Annette Whittemore said, "if not me, who?" (or something to that effect) i.e. one might prefer not to do it, but can you be sure that somebody else will? And is it any more their responsibility that yours? Individuals can easily make a difference in the ME/CFS world (as relatively few people do things).
(This is a general point rather than specific to CFSAC testimony)

 

[Nielk]

Thank you Hope123 and Dolphin. You gave me very good points to think about. I really appreciate it!

 

[ixchelkali]

I e-mailed Dr Lee on Friday to say why I find the live streaming video valuable and that I think for a disease like ME/CFS it's an accessibility issue. I politely requested that the live streaming video be continued. I haven't received an acknowledgement yet. I hope that if they hear from enough people they will make the necessary arrangements.

 

[Nielk]

I looked up the last meeting in May's testimonies and I had totally forgotten that I had written a testimony in advance and it's right there in their record. So, you are right Hope123, this does become part of their permanent records.

 

[justinreilly]

excellent points, Hope!

 

[Nielk]

Anyone who is going and staying in the hotel? I looked up the prices and they are pretty steep. Do they have a special group price?

 

[Dolphin]

I looked up the last meeting in May's testimonies and I had totally forgotten that I had written a testimony in advance and it's right there in their record. So, you are right Hope123, this does become part of their permanent records.

Two in one thread! I think people with ME, CFS, ME/CFS, whatever might be forgetful!

 

[Hope123]

Anyone who is going and staying in the hotel? I looked up the prices and they are pretty steep. Do they have a special group price?

Before CFS, I used to travel quite a bit. For business meetings, I rarely stayed at the recommended hotel unless someone was paying my whole way; the idea of paying a lot for a hotel room didn't suit me. Apart from using Expedia.com and Orbitz.com, here are some alternate arrangements that might cost less:

http://www.airbnb.com/ (some people are renting out a room; others a whole apt.; goes from very cheap to luxury apts.)
http://www.hiwashingtondc.org/ [has private rooms]

Also, chains like Motel 6 are often basic but reasonably cheap. Sometimes bidding on Priceline helps but with their system you might not know the name of the hotel beforehand (you decide location/ stars).

Tell them everything you are a member of -- there are often discounts (10%-25%; not always advertised) for being a senior, a current or former member of the military, government workers, AAA member, AARP member, student, being a relative of someone who travels a lot and has an airline/ hotel frequent user card, etc. Click on the "specials" button on the hotel website but also talk to hotel front staff.

If you find a good price via a broker like hotels.com, call the hotel directly and ask for their best price. [Say exactly that, What is your best price for XX dates/ XX bed size?] When hotels get a room booked through a broker, they sometimes lose money and instead will give you a better price if you book through their phone or own website directly. If hotels.com is lower, tell them that price and bargain politely.

 

[Hope123]

I might as well complete this by saying a bit more about DC, having visited when family lived there.

Dulles/ IAD is the further airport and it will take you longer (like more than an hour) to get to DC metro area. However, do-able with the DC Flyer bus and Metro [subway] system. National/ DCA has less airlines and is sometimes more expensive but is right on the Metro line and within 15 minutes of less of DC main metro area.

Important thing when looking for a place is that it be near a Metro stop unless you plan to drive. Don't drive as parkingcan be difficult. Metro is very convenient and Holiday Inn is within 1-3 blocks of two Metro stops, L'Enfant and FederalCenter Metro. "A" marks Holiday Inn.

http://g.co/maps/bj5km
Metro website: http://www.wmata.com/

For areas Metro doesn't reach or to save money for some areas, take the DC Circulator ($1):
http://www.dccirculator.com/

DC generally safe but be careful of some areas in SE DC and Anacostia.

 

[Dx Revision Watch]

Couple of points.

There is a generic email address for CFSAC but enquiries that I made in September around a date for the fall meeting I sent direct to Dr Nancy Lee, and CCd in CFSAC Chair, Dr Chris Snell. This was responded to by Dr Lee.

Enquiries made recently in relation to meeting arrangements and venue were also sent to both Dr Lee and Dr Snell but were responded to by Mr Emmett Nixon (CSFAC Support Team).

The letter I sent yesterday requesting that the decision to provide only audio for the meeting with video later be reviewed has been sent to Mr Nixon and CCd to Drs Lee and Snell and a colleague of Mr Nixon.

Mr Nixon's email address is:

Emmett Nixon (HHS/OASH) CFSAC Support Team

Emmett.Nixon@hhs.gov




Dr Lenny Jason tells me this will be his final meeting before his term ends (he has served since 2007) but I don't know who else will be stepping down or who has come to the end of their term. I have read that it was possible to nominate UK professionals as potential Committee members.

Current Roster is here: http://www.hhs.gov/advcomcfs/roster/index.html


The make-up of the Committee and the backgrounds and areas of expertise from which Committee members are drawn, is set out in the Charter:

http://www.hhs.gov/advcomcfs/charter/index.html

[...]

MEMBERSHIP AND DESIGNATION

The Committee shall consist of eleven members, including the Chair, who are appointed by the Secretary or the Secretary's designee. Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS. All members of this Committee are classified as special Government employees (SGEs) and are subject to government ethics rules.

Committee members shall be appointed to serve overlapping terms of up to four years. Terms of more than two years are contingent upon renewal of the Committee charter by appropriate action prior to termination of the Committee charter. A member may serve up to 180 days after the expiration of the member's term if a successor has not taken office.

Non voting ex-officio members may inform discussions of the Committee as CFSAC develops recommendations to be given to the Secretary. The Committee shall include seven non-voting ex officio members. The ex-officio membership will be comprised of representation from the Agency for Healthcare Research and Quality (AHRQ), Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), National Institutes of Health (NIH), and Social Security Administration (SSA). The Committee structure may be expanded to include representation from other Federal agencies, as it is deemed necessary by the Secretary or designee for the Committee to effectively carry out its function.

Members shall be paid at a rate not to exceed $200 per day, plus per diem and travel expenses, as authorized by Section 5703, Title 5 U.S.C., as amended, for persons employed intermittently in the Government service. Members who are officers or employees of the United States Government shall not receive compensation for service on the Committee.

-----------

 

[Nielk]

Thank you Hope123 and ME Agenda for all the information provided.

 

[Dx Revision Watch]

Notice: CFSAC November 2011 Meeting Changes October 18, 2011

A slightly expanded version (diffs indicated in blue bolding) of the email I received from Mr Emmett Nixon on October 14 has now been posted on the CFSAC site:


http://www.hhs.gov/advcomcfs/notices/n101811.html

Notice: CFSAC November 2011 Meeting Changes October 18, 2011

We have heard concerns about changes we have made in the venue and the format of the November 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. Below we provide additional details about the upcoming meeting and our reasons for the changes.

We are working diligently to address major shifts in budgetary and staffing restrictions and remain committed to protecting the personal safety and well-being of the public attending the meeting. To this end, the November CFSAC meeting will be held in the Columbia Room at the Holiday Inn, located at 550 C. St. SW, Washington, D.C. 20024. This change was made because Room 800 of the HHS Humphrey Building, where previous CFSAC meetings have been held, cannot accommodate more than 50 persons, and HHS staff are required to escort all persons attending the meeting due to the Humphrey Buildings security measures. The Columbia Room at the Holiday Inn holds a maximum of 300 people and provides an opportunity for the public attendees to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel lobby and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia Room to accommodate attendees who need a place to rest. As at past CFSAC meetings, HHS will not provide any medical services.

There will be a live audio link to the two day meeting, which will allow listeners to hear the entire meeting in real time. Due to budgetary constraints, we are unable to provide a live video cast of the meeting. We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.

[Ed: The following text omitted from online version "This recording will provide a higher quality video at substantially lower cost."]

Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.

Thank you for your continued commitment to, and participation in, the important work of the CFSAC.

CFSAC Support Team

 

[frenchtulip]

When are submissions for patient testimony due (for those not attending the CFSAC meeting)? Thanks.

 

[Andrew]

When are submissions for patient testimony due (for those not attending the CFSAC meeting)? Thanks.

You didn't say you are attending. But either way, the answer is here: http://www.federalregister.gov/arti...e-chronic-fatigue-syndrome-advisory-committee

 

[Jill McLaughlin]

Niekl, I am going to try to go also. The ICC is for ME. This is a CFS committee. For those with ME, protest their name change to ME/CFS and proposed code recommendations. I didn't go to these meetings and withdrew my nomination as a CFS committee but they cannot drag ME into it also. If we separate them it makes sense, not this constant ME/CFS shell game.

If I do go and give testimony, I was thinking of doing it in Limerick form, (just kidding) What can I say that they don't already know or have heard. The only thing I think I can do is put a face to the illness and personal story. They know that we need funding. They know we need more studies to find bio-markers. They know the name is a joke. I'm sure they all know about the new ICC. They know that doctors need more education about the illness. What can I tell them that they don't already know?

























/