• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CFSAC Meeting Dec. 3rd & 4th, 2014

Undisclosed

Senior Member
Messages
10,157
Sue Levine just called out a list of venues to promote the results of the IOM and P2P and Phoenix Rising was part of the list.
By the way, in case PR is used in that way, it will be my sign to hang my hat and leave.

Who else was part of this list @Nielk.

We, as an organization, made it patently clear that we do not support them.

Sue Levine has never contacted us to even ask us any thing, so that was a bit presumptious of her to say anything about Phoenix Rising. I would hang my hat and leave too if PR was ever used this way. She can be confident that if the IOM and P2P go the way they seem to be going to us, it will likely change PR to be actively fighting against the crappola. Boycott and fight.
 

Nielk

Senior Member
Messages
6,970
@Kina - there was a list and I'm drawing a blank. I know that some were medical media that reach doctors and nurses. Maybe others will know.
 

leela

Senior Member
Messages
3,290
I agree with @Sing on being relieved Nancy Lee is gone and the hope she and Marshall will have to answer to their illegal shenanigans. I agree with @Nielk that there is a worsening of the circus-like environment that CFSAC has become. I listened to just the last hour or so so I cannot speak with much authority; however what I did hear was a general lack of seriousness, an inappropriate levity, a lack of knowledge about procedure with a paradoxical surrender to it (referring to the "oh well, we already let P2P and IOM happen so now we're not allowed to do anything, our widdle hands are tied)
....and at the very end, members agreeing to approve the minutes of the last meeting when some admitted to having not yet read them--which is disconcerting given that Nancy Lee misrepresented their recommendations, so it would seem prudent to check what the minutes reflect.
(Unless that was a diferent meeting in which case disregard :thumbdown:.)

Not to mention the way the whole meeting format, public participation, and streaming have degenerated so appallingly over the last year or two--in this the age of technology and communication.

Which is not to say there weren't some good moments. It's important to acknowledge that or those that at least give it a try will not even bother.

However, personally I long ago gave up hope that CFSAC, or any government agency, is ever ever going to do anything to advance progress with this disease. Ever. In fact, it is crystal clear that the agenda is to *impede* progress. It's more than blatant, thirty years of blatant. And with the discovery of Nancy Lee's misdoings, and the whole FOIA fiasco, there is just no doubt any more, nor can any one accuse those of us with clear eyes of being tinfoilhatty.

These people are not our allies. We need to seek help elsewhere.
 

catly

Senior Member
Messages
284
Location
outside of NYC
According to this org chart, Nancy Lee is still in charge of the HHS Office of Women's Health, which means that Barbara James reports up through her, so I'm not sure how much that helps us--probably not at all since now Dr. Lee can just continue to perform her shenanigans behind the scenes.
 

leela

Senior Member
Messages
3,290
According to this org chart, Nancy Lee is still in charge of the HHS Office of Women's Health, which means that Barbara James reports up through her, so I'm not sure how much that helps us--probably not at all since now Dr. Lee can just continue to perform her shenanigans behind the scenes.
Ugh!! She oughtn't to be in charge of anything.

Otoh, as Susan was trying to tie up the meeting early, someone *did* bring up getting some things on the agenda for next time, including getting
moved out of the Women's Health Category.
 

Nielk

Senior Member
Messages
6,970
@Kina -
Mary Dimmock reminded me of some of the other venues for disimination:
SOLVE ME/CFS, NJCFSA, IACFS/ME, PANDORA and "many others"
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
As they didn't contact PR, it's probably a safe guess that they contact anyone else regarding distributing something [presumably in a positive way] without knowing the contents, either.

My guess is no one would, at least not without reading it carefully and making a commentary that DHHS may not like too much.
 

Sing

Senior Member
Messages
1,782
Location
New England
Ugh!! She oughtn't to be in charge of anything.

Otoh, as Susan was trying to tie up the meeting early, someone *did* bring up getting some things on the agenda for next time, including getting
moved out of the Women's Health Category.

This may have been the same woman--not sure--who wanted them to pursue "a very deep understanding" of how decisions are actually made--implying, from this committee all the way up, as well as across the various agencies involved.

A member did speak of their committee and its work as "not having a home yet" and questioned its position within the Women's Health category. Since this had come after earlier testimony that pediatric cases at least are evenly divided between males and females, this question was even more pertinent.
 

Wally

Senior Member
Messages
1,167
Since we have a new "acting" Assistant Secretary for the HHS, I would suggest that complaints about the technology problems associated with the CFSAC meetings be brought directly to her attention. See, http://forums.phoenixrising.me/inde...ointed-as-acting-secretary-for-the-hhs.34188/

Dr. Salvo's interest in technology might make the problems experienced at the CFSAC meetings more of interest to her, especially since she is charged with oversight of this committee.
See, http://www.healthdatamanagement.com/news/Health-IT-Needs-to-Catch-Up-with-Other-Sectors-49383-1.html
“It’s the information and technology age and it’s time for health and healthcare to come along,” said DeSalvo, speaking at a Dec. 3 Bipartisan Policy Center forum in Washington, D.C. . . .

https://twitter.com/kbdesalvo
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
These people are not our allies.
The problem is that many of them are also not our enemies. They are being caught up and used by the system, wasting their time making recommendations that are not acted on. CFSAC is a toothless advisory committee. Change will require real commitment from higher up in government. Until we have that it might be time to boycott CFSAC.

We require a sign of good faith. The IOM and P2P and the recent revelations about changes to CFSAC recommendations are the opposite of good faith.
 

Wally

Senior Member
Messages
1,167
Since we have a new "acting" Assistant Secretary for the HHS, I would suggest that complaints about the technology problems associated with the CFSAC meetings be brought directly to her attention. See, http://forums.phoenixrising.me/inde...ointed-as-acting-secretary-for-the-hhs.34188/

Dr. Salvo's interest in technology might make the problems experienced at the CFSAC meetings more of interest to her, especially since she is charged with oversight of this committee.
See, http://www.healthdatamanagement.com/news/Health-IT-Needs-to-Catch-Up-with-Other-Sectors-49383-1.html


Here is information from the CFSAC Charter identifying the Asst. Secretary's role in oversight of the CFSAC. http://www.hhs.gov/advcomcfs/charter/index.html
The purpose of the CFSAC is to provide advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health (ASH), on issues related to myalgic enclphalomyelitis/chronic fatigue syndrome (ME/CFS). . . . The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary of Health . . .Management and support services for Committee activities shall be provided by staff from within the Office of the Assistant Secretary for Health . . . .The ASH shall provide direction and guidance for services performed to support CFSAC activities and operation
 

Valentijn

Senior Member
Messages
15,786
The problem is that many of them are also not our enemies. They are being caught up and used by the system, wasting their time making recommendations that are not acted on. CFSAC is a toothless advisory committee. Change will require real commitment from higher up in government. Until we have that it might be time to boycott CFSAC.
That's pretty much what my fiance said when he got home after work and listened to some of it. He would never go to this sort of meeting at work, because it lacks a clear purpose and has no authority to actually do anything. It's a purely political committee, but we need to go higher up the chain to effect political change.

I've been on the fence about boycotting CFSAC in the past, but I think it's getting clear that CFSAC is a farce which is at best useless and at worst is actively being used against us. Many (most?) members of the committee have good intentions, but that doesn't count for anything when HHS is deliberatly blocking them from doing anything constructive.

We need our own CFSAC, without HHS or some other bureaucratic and obstructive agency running it. Patients, advocates, and experts need to take over - HHS has failed us.
 
Last edited:

Tuha

Senior Member
Messages
638
Except patients testimonies, was there at least 1 positive thing in this CFSAC meeting?
 

Valentijn

Senior Member
Messages
15,786
Except patients testimonies, was there at least 1 positive thing in this CFSAC meeting?
Some of the committee members had very good questions and comments. But I don't think anything tangible is resulting from it.

CFSAC will comment on P2P in the 30 day comment period, but it's not like that's going to get completely rewritten while taking additional research or the weaknesses of CBT/GET research into account. They can't do anything at all about IOM, except say "you suck" after it gets published, and HHS will still happily promote it regardless of our objections - and CFSAC can't even get the early release access to the report which HHS gets.

CFSAC also can't do much with the biobank and/or patient database project, since NIH has already denied the funding requested for it.

Any idea what the other working groups or subcommittees or whatever they're calling them will be trying to do? I didn't watch the end.
 

Wally

Senior Member
Messages
1,167
I believe there are a number of problems with the CFSAC meetings, which have been made even more apparent by the use of a webinar format. While cost savings is a noble idea, it has become excruciating clear that the current use of webinar technology by the HHS for CFSAC meetings is failing miserably.

It is difficult to put into words how frustrating it has become to try to watch, listen or participate in these CFSAC meetings. Perhaps someone else's words will paint a better picture of the frustration and disillusionment felt by many in the ME/CFS community due to the substandard attention and resources given to this illness by our government.



 

Sing

Senior Member
Messages
1,782
Location
New England
Some of the committee members had very good questions and comments. But I don't think anything tangible is resulting from it.

CFSAC will comment on P2P in the 30 day comment period, but it's not like that's going to get completely rewritten while taking additional research or the weaknesses of CBT/GET research into account. They can't do anything at all about IOM, except say "you suck" after it gets published, and HHS will still happily promote it regardless of our objections - and CFSAC can't even get the early release access to the report which HHS gets.

CFSAC also can't do much with the biobank and/or patient database project, since NIH has already denied the funding requested for it.

Any idea what the other working groups or subcommittees or whatever they're calling them will be trying to do? I didn't watch the end.

My impression--with a foggy memory--is that the members were trying to work out, organize and commit to using whatever levers of power that are officially available to them to address the P2P. While they aren't allowed to weigh in as CFSAC in that meeting, they can comment individually as members of the public, so my impression is that some will do so. Additionally they will respond officially in the comment period as quickly as possible. Valentijin, they organized two subcommittees, one to take aim at the P2P and the other to take aim at the IOM.

Other comments: We understand and appreciate our patient advocates and their focussed statements.
The doctors and researchers have a more complicated purpose, however. It is not only to advocate for what we need in terms of research, name, policies, etc., it is also to participate more with those in government who control, or have access to the control, for doling out research dollars, making the official definition and shaping the plans ahead. Rules for doctors, institutions and insurance all hang in the balance, in addition to funding.

The doctors and researchers who step up to the plate and participate seem to be the ones who have already been awarded research grants or possibly who may get them next. I don't believe for a moment that our doctors and researchers are in it just for the money--that would be a strange idea in our field! But it is the money which will shape the movement forward--what can be found out, what can be done. Our doctors and researchers have a tough, complex role. I thought that the ones at the meeting did well, all things considered, and am glad I listened to the meeting yesterday.

The sound and technical issues, as others have commented on, absolutely must be improved upon. The level of technical delivery was unacceptable. I was able to hear everything by straining, but I know that not everyone could.

Still, this meeting in my view was well worth listening to.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Many if not most of the researcher and doctor participants in CFSAC probably have good intentions. Doctors and researchers do have to navigate difficult political waters ... its not just about the science. I am starting to think that if a large cohort of researchers and doctors acted as a block, outside of CFSAC, it might have more effect. I am not sure of this however.

Perhaps an independent body would work better, one not bound by CFSACs rules. It could then make its findings very public. This however leads to issues of funding .. .first, who will fund the body? Second, would this kind of action negatively impede funding and grant applications for biomedical research into ME and CFS?
 

Sing

Senior Member
Messages
1,782
Location
New England
Alex, I think this is already happening. The letter of objection that so many of our doctors signed for instance, showed a unanimity and indication of working together, with an implication beyond that letter. The collaboration that the Open Medicine Institute encourages and relies upon, the internet's influence, the biobank, etc. A lot is growing up beside what is strictly under the control of govt agencies and committees. Patients are communicating, as in here and elsewhere--it is all becoming a different landscape and political environment for them to continue to succeed in the same old top down, authoritarian model.