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

Nielk

Senior Member
Messages
6,970
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a public meeting on Tuesday, August 18, 2015, from 9:00 a.m. until 5:00 p.m., ET and Wednesday, August 19, 2015, from 9:00 a.m. until 5:00 p.m., ET. This will be an in-person meeting at the Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Room 800, Washington, D.C. 20201. For a map and directions to the Hubert H. Humphrey building, please refer to http://www.hhs.gov/about/hhh.html.



The agenda for this meeting is being developed and will be posted on the CFSAC website, http://www.hhs.gov/advcomcfs/ when finalized. The meeting will be live-video streamed at http://www.hhs.gov/live. Listening-only via telephone will be available on both days; call-in information will be posted on the CFSAC website prior to the meeting. Public comment may be provided in person, by telephone, or in written form.
 

shannah

Senior Member
Messages
1,429
The spring meeting is a little late isn't it?

Let's hope the agenda reflects all the latest developments. Not that it's really going to make much difference. As we've seen in the past, this committee can advise with all the best recommendations in the world. It doesn't mean anything is actually going to be done.
 

Seven7

Seven
Messages
3,444
Location
USA
As a community what is the ONE recommendation you would do?

I think we need a specialty. That way the money and reaserch gets followed and recieved by DRs. With the existing doctors/ specialties we are dead.
 

halcyon

Senior Member
Messages
2,482
I think we need more information about etiology before a specialty can be selected.

I think a consensus still needs to be reached on research criteria. Obviously the IOM criteria weren't intended for research (at least I hope they weren't) so we're still left with the unanswered question of what is the best criteria for use in research.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Jennie Spotila has posted about this meeting on her blog and says:

OccupyCFS said:
The big news is that CFSAC will hold a two day in-person meeting on August 18th and 19th. There is no agenda yet, and instructions for submitting testimony will presumably be included in the August 3rd Federal Register notice.

My suggestion is that you don’t wait for the Federal Register notice. The deadline for submitting public testimony will be probably be about three weeks from now. Start working on your comments, because that deadline will be upon us very quickly.

She also says:

OccupyCFS said:
Fourth, the new NIH ex officio is Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke. This is huge news. For the first time that I can remember, the NIH ex officio is from an Institute, rather than the Office of Research on Women’s Health. Furthermore, Dr. Whittemore has acted as the Program Official on ME/CFS grants to Dr. James Baraniuk, Dr. Mary Ann Fletcher and others. Whether this signals changes at NIH remains to be seen.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I wonder if this meeting should be the target of a coordinated patients’ campaign on a specific issue, such as NIH funding or a better NIH home than Women’s Health, as per Brian Vastag’s letter in the Washington Post?

@jspotila - wondering what you think about this.
 

caledonia

Senior Member
I can't believe that nobody has remarked on the return of Nancy Lee as DFO, either here on on Jspot's blog. This would be the same Nancy Lee that intimidated three members of the CFSAC and threatened them with expulsion for expressing their views regarding unauthorized changes made to their recommendations sent to Sebelius. This is absolutely outrageous.

http://phoenixrising.me/archives/17475

http://paradigmchange.me/wp/respons...hing-right-so-you-have-no-reason-to-complain/

Note that twelve patient organizations as well as many advocates asked for this incident to be investigated, yet HHS swept it under the rug, saying she had done nothing wrong.
http://phoenixrising.me/archives/17475
This is just another example of the corrupt and ineffectual nature of this committee. I don't think it matters how many "good" people are on the committee or what the agenda is. The committee will end up doing whatever "they" want it to do, which I'm sure will not be good for us.

I'm open to any suggestions, but I'm thinking a protest demanding Lee's resignation would be a good starting point.
 

jspotila

Senior Member
Messages
1,099
I wonder if this meeting should be the target of a coordinated patients’ campaign on a specific issue, such as NIH funding or a better NIH home than Women’s Health, as per Brian Vastag’s letter in the Washington Post?

@jspotila - wondering what you think about this.

I think a coordinated patients' campaign on a specific issue is a great idea, and it has been attempted in the past. Some obstacles we've faced in the past were: achieving consensus on what the specific issue should be; coordinating among all likely commenters; getting the word out to new commenters (who are extremely difficult to reach).

There are so many shenanigans happening right now, it's hard to pick a single issue. I think CFSAC is likely to discuss recommendations in reaction to the IOM/P2P reports, but we won't know what those are in advance so it's hard to create messaging on it. NIH funding and obstacles like the lack of an Institute home are my highest priority, but that's just my personal opinion.
 

SOC

Senior Member
Messages
7,849
I can't believe that nobody has remarked on the return of Nancy Lee as DFO
This is very disappointing. IMO, Nancy Lee has gone far beyond "not much help" and well into harm. Every time I listen to the CFSAC meeting, I am appalled by how little she appears to understand about ME/CFS. Given that she's been the DFO for CFSAC for a number of years, she could have chosen to become educated and hasn't bothered. I find that utter disinterest very disturbing.

The optimist in me wants to hope that recent developments in research and awareness (IOM, P2P) will change the relative ineffectiveness (despite the best efforts of some of the dedicated members) of the CFSAC. My pessimist doubts anything will change as long as we're in Women's Health and Nancy Lee is DFO.
 
Messages
15,786
My pessimist doubts anything will change as long as we're in Women's Health and Nancy Lee is DFO.
Yes, I think her biggest problem stems from coming from the Office of Women's Health. It is not a department which handles any medical disorders or medical research, outside of CFS. Generally speaking, they are involved in managing social research to see how women and/or minorities, etc, are impacted differently in the health system. As such, it seems to be entirely staffed by people who aren't very clear on what science, medicine, or biomedical research actually are.

We need to get our disease out of their department. And hopefully Nancy Lee and the rest of them will stay in Women's Health and not try to follow us wherever we end up. They cannot be allowed to continue to house and treat CFS as a social issue.
 

A.B.

Senior Member
Messages
3,780
Yes, I think her biggest problem stems from coming from the Office of Women's Health. It is not a department which handles any medical disorders or medical research, outside of CFS. Generally speaking, they are involved in managing social research to see how women and/or minorities, etc, are impacted differently in the health system.

What a bad situation. How did it even end up in that department? This was never considered a woman's disease.
 

caledonia

Senior Member
What a bad situation. How did it even end up in that department? This was never considered a woman's disease.

From Mary Dimmock's book Thirty Years of Disdain - How HHS Buried ME (linked at http://www.meadvocacy.org/resources about halfway down the page)

CFS was originally in NIAID due to its association with Epstein Barr Virus.

CFS was originally located in the National Institute of Allergy and Infectious Diseases (NIAID), but then was moved to NIH’s Office of the Director in 1999, and then to the Office of Research on Women’s Health (ORWH) in 2001. The stated reason for these moves was to help foster collaboration across institutes and also across agencies.

A Trans-NIH Working group lead by the Office of Women's Health was supposed to assist with that.

More details on page 37 and 107. Everything is referenced if you want to explore further.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
It is not a department which handles any medical disorders or medical research, outside of CFS.
Also, they seem to not every have any money, so if you suggest sum that is bigger than before even though it is a very small fraction of a realistic amount of per-year funding for the disease, they panic, like they have never heard of that amount being spent on anything before, and say it's not possible.

Of course it's possible. Other diseases do it all the time. There is no rational reason why we shouldn't have the same access other diseases have.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Yes, I think her biggest problem stems from coming from the Office of Women's Health. It is not a department which handles any medical disorders or medical research, outside of CFS. Generally speaking, they are involved in managing social research to see how women and/or minorities, etc, are impacted differently in the health system. As such, it seems to be entirely staffed by people who aren't very clear on what science, medicine, or biomedical research actually are.
Also, they seem to not every have any money, so if you suggest sum that is bigger than before even though it is a very small fraction of a realistic amount of per-year funding for the disease, they panic, like they have never heard of that amount being spent on anything before, and say it's not possible.
A question from an ignorant UKer:

Did the misappropriation of funds meant for ME/CFS research happen after the move to Women's Health? If so, and this can only be speculated about, do you think it would have happened if ME/CFS had a proper home?