Will the CFS Advisory Committee be back this fall? Not many people seem to be paying attention to the fact that it could potentially disappear.
The CFSAC is a chartered federal advisory committee, and by law it must be renewed every two years. The current charter will expire on September 5, 2014. There has not been a single peep about whether renewal is pending.
In the past, renewal has sometimes been pro forma and sometimes has required a little push from advocates. Public input has been sought on revisions to the charter as well. In 2012, you may recall, the addition of the non-voting liaison members was proposed and the public was able to provide comment on that change to the charter. This year? Nothing.
That does not automatically mean that the charter will not be renewed. After all, four new members were just appointed this summer, along with the renewal of two current members. The formation of new working groups after the June 2014 meeting also suggests that a new charter is forthcoming.
Would it be a bad thing for CFSAC to disappear? Many advocates would say no. They believe that CFSAC is an exercise in futility that drains our focus and resources away from more productive advocacy efforts. I certainly understand and share this frustration, and I’ve been a vocal critic of some aspects of the committee’s operation and recommendations.
But I think it would be a great loss for CFSAC to be dissolved. Right now, the agency representatives must give reports and answer questions. Think of all the things we have learned about only because of those reports. For example, we learned that the second phase of CDC’s multisite study will not include two-day maximal exercise testing, and CDC is relying on the advice of some ME/CFS experts in doing so. We learned about the P2P meeting more than a year before the final approval was given and the meeting officially announced.
And don’t forget that information flows the other way, as well. Through our public comment, advocates have not only conveyed the seriousness of the disease and need for urgency in the federal response. We have managed to put many issues on the public record, including sharp criticism of the CDC multisite study, the P2P meeting, and more. Do not underestimate the importance of that public record. HHS may continue to ignore what we say, but they can’t say they didn’t know and we can use that public record in other political venues.
I’ve heard it said that HHS would love to have an excuse to make CFSAC go away. For that reason alone, I hope it is renewed. I do not see a down side to requiring the agencies to report on their actions (or lack thereof), information that it would be very very difficult for us to get any other way. So let’s hope the renewal is pro forma, and that I can update this post in two weeks with a new charter.
Update August 22, 2014: The Solve ME/CFS Initiative announced via their website yesterday that they had written to Secretary Burwell in support of CFSAC renewal on August 1st. To date, they have not received a response. Read the full letter here.
Update August 24, 2014: Billie Moore, non-voting liaison for the NJCFSA, says in the comments below that there will be a fall meeting of CFSAC, and it will be via webinar. This was confirmed to me by another source, as well.
It would be mistake for it to be dissolved. Meanwhile, the Lyme community is trying to get an advisory committee as ME/CFS has. This forum provides accountability and forces them to hear our concerns. Yes, they can ignore it. But they can ignore us even more if they don’t have to face us. At least, we have some access this way. And I think it would be a huge mistake to think nothing good has resulted. Eileen Holderman worked many hours and was largely effective in getting some changes to the CDC website. Did it go as far as we liked? No. But it was progress. I remember when it came up. The committee was about to vote on the CDC website when Dr. Miller, the CDC ex-officio, spoke up and said, basically, “You don’t have to vote, we’re willing to work with some of you on accepting suggestions for changes.” There would have been no framework for such a thing to happen without the CFSAC. And it shows the importance of CFSAC statements, how the agencies feel about things negative about their agency, which in this case, was a motivation to collaborate.
We have to remember that most progress is by evolution, not revolution. But we can’t throw away any access, or else they can keep the door closed to us all the time.
All I can say is if HHS would like it to go away, that’s a good reason for us to make
sure it doesn’t!
Thanks, Jennie, for all your brain work; better you than me!
@Tina
Thirty years of the progress of evolution . . . the ‘progress’ of evolution equals MILLIONS of ME/CFS patients worldwide and the ME/CFS global epidemic spreading.
That is–millions of very sick people, many housebound and/or bedbound — with all of life stripped away from us.
THAT is NOT progress! It IS time for revolution! Well past time!!
Thanks, Jennie, for making/keeping us aware of the workings of CFSAC.
Also and in relation to Lyme –
The following is an aside, but perhaps peripherally relevant: Someone posted on PR that a bill has been passed to establish an advisory committee for Lyme. Additionally (and from the PR thread – emphasis added):
“…The bill sets up a ‘working group’… for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to ***chronic or persistent symptoms*** and chronic or persistent infection and co-infections.’
…At one point, Gibson’s bill was amended ***to exclude patient representatives or Lyme-treating physicians***. The Lyme community viewed the change as dangerous for Lyme patients.
Pat Smith of the Lyme Disease Association led a nationwide effort to restore patient-friendly language to the bill…
http://lymedisease.org/news/lyme_di…s&utm_campaign=Aug Lyme news&utm_medium=email
Questions: Will the Lyme advisory committee be within NIAID? Are there any pros (as in pros/cons) for ME/CFS being excluded from NIAID? CDC lists Lyme as possibly related to ME/CFS, so what relation will a Lyme committee and CFSAC have to one another? If the Lyme committee is housed within NIAID, how does NIH justify ME/CFS’ absence from there?
The PR thread: http://forums.phoenixrising.me/index.php?threads/us-house-bill-requires-research-on-lyme-disease-and-tick-borne-illness.31736/#post-490759
Link to bill, as shared on PR: http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf
Additional info (concerns/overlap with ME/CFS) –
Lyme disease diagnosis (including post-Lyme / chronic Lyme) disputed; relabeled as chronic multisymptom illness (CMI):
http://www.ncbi.nlm.nih.gov/pubmed/19699380 (This reference has been used in at least one EU-state healthcare system)
FDA moves to control in-lab tests (ongoing – but w/ public comment soon available?), including those for Lyme disease:
http://www.nytimes.com/2014/08/01/business/fda-to-regulate-lab-developed-test-kits.html?_r=0
And finally from Columbia U – abbreviated and with emphasis:
Bc patients with chronic Lyme…often experience dramatic fatigue (***much akin to patients with CFS***), they spend much time in bed and so their muscles lose tone over time. This can lead to an ever worsening *syndrome* in which ***patients get tired after exercise and so avoid it.*** Further deconditioning… leads to considerable post-exertional fatigue.*** To counter this cycle, a very ***gradual but progressive exercise*** regimen needs to become a daily part of the patient’s routine for a maximal return to health.
http://www.columbia-lyme.org/patients/ld_treatment.html
Newbie to MECFS here, and from my early observations we absolutely need CFSAC.
It would be nice if senior level staff in HHS, CDC etc. were held accountable somehow for the implementation of committee recommendations and for checking in with committee stakeholders to ensure the group is meeting it’s legislative responsiblities. (Well, one can dream). But, if we didn’t have CFSAC, I believe we’d be totally screwed. We have no widespread organized and cohesive advocay group to represent us. It would be nice if we did, but we don’t and without that, well I don’t know what would happen but I can’t believe it would get any better.
BTW Ren, I’m the one that posted about the Lyme bill on PR. I only stumbled upon it because I’ve been following the 21st century cures initiative in the house of representatives http://energycommerce.house.gov/cures. It was good to find out that changes were made to the final bill based on advocay efforts. Unfortnately I don’t know the answers to your questions, but the points you make and your questions are very good.
BTW, I sent a letter to the 21st century cures committee on Aug. 8th. It was my contribution in honor of severe ME day. I’m sure no one has read it, but it made me feel better. If anyone else cares to email them, you can at cures@mail.house.gov.
Finally Ess, I’m all for a revolution. If you can think of a way to create a rally to include all of us stuck on our couches and in our beds, I’m with you!
Ess, I live in Birmingham, Alabama. So this makes me think of the Civil Rights Movement. As I’m sure you know, through peaceful protests, black people and their supporters were able to get Jim Crowe laws obliterated. Some might say that they were able to cause a revolution, a sudden change to powers and social order. Of course, they were in a position to force the issue. What leverage do we have to force the issue? We have very little. But to this topic, the CFSAC gives us a platform for us to at least be heard and exert political pressure to change.
Also, despite the change in the Jim Crowe law by evolution, I can tell you blacks were still subjected to discrimination. I worked at a pizza place in 1984, 20 years after the end of Jim Crowe laws and the protection of equal rights for hiring. But I saw that manager skip over all the black applicants and hire just whites. Later, the owner wanted to hire a young black man at the pizza place. The manager didn’t want to. It was a dispute. The owner won.
However, now 30 years later, I don’t think this would happen. The change from 1984 to now was not from a revolution change, it was the evolution of change of attitudes. Older people and their thinking retire and die. Younger people with their experience and knowledge take their place in positions of power. Education and experience has much more power because it leads to day-to-day decisions.
I would submit that some changes (FDA, CDC) are already occurring. We need more. Given our limited power politically and physically, we need the CFSAC to give us a platform to be heard.
@cathy l Every voice and every action that speaks up, acts up, forums and blogs, courageous acts by demonstrators in Washington, D.C. and San Francisco, California, for example, reporters like Llewellyn King and David Tuller, movies being made–Canary in a Coal Mine–The Forgotten Plague, recognition of ME Day on May 12, recognition of SEVERE ME Day on August 8th, patients speaking up at IOM meetings, THUNDER CLAPS, interviews, legal documents filed, e-mails and letters to Congressmen–signing petitions to STOP the IOM contract–the weekly TWEET Storm Protest–all of this and more spreads the word about ME/CFS to patients and the public–and the ONgoing INjustices to a very seriously ill LARGE group of MIStreated and NEGlected patients.
The list of advocates is long and has a strong base! AND growing! To everyone out there, please add your voice in any and every way that you can!!
MORE–Rituximab trials in Norway and beyond–APOLOGY by the Norwegian government to ME/CFS patients for the years of WRONGdoings and MIStreatment.
MORE–sincere dedicated medical professionals like Dr. Montoya speaking up on our behalf @ recent CFSAC meeting–dedicated researchers working tirelessly on our behalf–Dr. Judy Mikovits’ book PLAGUE coming into print early September.
Yes–and compilation of lists of patient deaths because of ME/CFS.
Young Brooke currently dying from ME–one more post from Brooke on her blog http://www.documentingme.net/
dated July 31, 2014.
WAKE UP, America, to these INjustices to human life–yesss, right here in the US of A caused and perpetuated by the same!!
This PLAGUE of ME/CFS is spreading as we speak and write–hitting men, women and children–DEStroying our lives!
The numbers grow in strength with every voice added to advocacy. Together we ARE making INroads and IMpact! Social media is a very powerful tool for us. Social media has a LARGE impact with a wide reach–we can add our voices there–commenting on forums and blogs, Facebook and/or Twitter. Easy on Twitter with the tweets–use only 140 characters. Easier than one might think to sign up and TWEET — speak up/spread the word!
Speak up/write up wherever/whenever you can–this also encourages others to join in our FIGHT–we need our many voices. Join in protests/actions in any way you can. It DOES make a difference–we grow in numbers and voices–and we are growing and speaking up in ever greater numbers–adding to the strong advocacy base.
Sick–many housebound/bedbound–yes–but NOT to be underestimated in the face of such BLATANT ATTACK and INjustice–IOM & P2P–the burial grounds for ME/CFS!!
US of A could well do with taking a lesson in HUMANITY, HUMILITY and HONESTY from the Norwegian government!
Best wishes. Please come join us @ Saturday’s TWEETSTORM Protest.
#StopP2P4ME
@Tina
By definition, revolution does not necessarily connote violence.
P.S.
For newbies everywhere, it behooves us to be well aware of the politics, and the various players that have made ME/CFS a NEGLECTED and political disease over the last 30 years. Here is another very active source in advocacy.
http://www.mecfsforums.com/index.php
I absolutely believe the charter should be renewed. I can say from living abroad in a country that does not have anything remotely close to a federally-chartered advisory committee for ME/CFS that its mere existence is enviable, even though I too am ridiculously jaded about CFSAC’s ineffectiveness (the written testimony I submit each year feels is done with the knowledge that it allows HHS to say “look, we listen!” when they totally don’t, but I still do it).
But, as Jennie has written, at a bare minimum and if nothing else, it serves the purpose of continuing to create a public evidentiary record concerning the government’s knowledge of — and failure to do anything about — a tragic public health crisis that can be useful going forward. That’s why I submit something each year, anyway.
We can’t read the future: there may come a point where CFSAC could be more useful in some novel way that no one has thought of so far. That (narrow) possibility is precluded if it ceases to exist. (Reading this back, it makes me realize just how low my expectations have become…I definitely need to get more fired up.)
The next CFSAC meeting will be in October or November – no date yet. It will be another insulting, outrageously inadequate WEBINAR like the other two in Dec. 2013 and March 2014. Nancy Lee, DFO, says the HHS departments must cut back on Advisory Committee in-person meetings. Handy excuse not to have to face the patients and advocates in person, not only for NL and staff but also for all ex-officios, only a few of whom seem genuinely interested in the subject of ME/CFS.
Billie
The CFSAC is the only publicly accessible government agency that makes recommendations to the HHS regarding ME/CFS. And as such, many of their recommendations and comments are useful to activists who are trying to make a case to congress reps. Without the CFSAC and its web presence, it’s just me making claims without any official support.
Everything that people with ME/CFS do to insist that we’re heard and our disease seriously helps advance our cause. Every doctor, researcher, journalist and public figure that advocates for us helps us.
There are researchers here and in other countries who are making breakthroughs in diagnosis, including in Japan, with the discovery of differences in some brain cells between those with ME?CFS and healthy controls. In Australia, there is an institute studying the disease.
I equate the movement for us to equal the HIV/AIDS movement. It took activists doing non-violent civil disobedience all over, including in New York at St. Patrick’s Cathedral, the “Silence = Death” campaign, which became a big thing, all types of protests to push the government to do adequate research to find the cause and a treatment.
The Civil Rights Movement was huge. It made a difference, but racist attitudes persist. It comes up on TV, and much of it online on social media. It shows up in unemployment, underemployment and income statistics. Many companies still discriminate.